Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tempest on May 12, 2017, 04:01:40 PM
-
This is a thread specifically for ladies for whom HRT has stopped working, or who have had extreme difficulties using HRT.
Anyone is very welcome to post of course as this is an open forum, but please respect that these ladies are having particular difficulties and therefore may not conform to what is considered 'the norm' when it comes to HRT. Thank you! xxxxx
-
Thank you so much Tempest.
How I wish I wasn't on this road, but since I am, I am glad it is with you :-*
And hello to all the other ladies who are experiencing such difficulties.
Just to repeat what I said on another thread, I had 2 calls today that might just help us gain some awareness at least.
I don't want to reveal their identities on here but experts in UK and US who have each offered to correspond and blog about this issue that's affecting us.
For me that would be a small step forward as it is just not being acknowledged. xxx
-
That is simply wonderful, Edelweiss!
Despite your every day struggle, you're being so proactive in seeking answers and sharing your findings to help others.
What a wonderfully generous and kind lady you are! Thank you so much. xxxxx
-
Hey lovely, we can but hope... and perhaps time will heal us too. xxx
-
Thanks ladies for this. Would it help outlining a timeline of us ?
-
I think I may be on to something here in my case (and Annie will be interested in this too), after my dialogue today with Hurdity regarding allergies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3537328/
I'm going to contact my Anaphylaxis Consultant to ask if it's possible that exogenous estrogen is causing my body to produce an abnormal amount of histamine again through mast cell degranulation - just as it did in perimenopause before my oopherectomy.
If so, this would account for my body's violent reaction to estrogen only hrt. It may just be that my immune system is trying to tell me something!
xxxxx
-
Hi Annie, what do you mean a timeline of us? Sorry if I'm being thick :) xxx
-
I think it would be good if I understand Annie correctly to share what went wrong with us, when and what our symptoms are.
I'm truly astounded how almost identical you and Alesia are, Edelweiss! xxxxx
-
What a good thread to start as there could be others later on down the line that might possibly find themselves in the same position.
My time line briefly goes
Age 48 symptoms anxiety,palpitations,panick attacks,genuinely felt that I had a terminal illness,didn't know where I felt comfortable being. Took about a year to find a gp to believe that it could be meno related as NO not flushes ever ! This was so,so unlike me,a confident,bubbly person reduced to a gibbering wreck. :'(
49 started elleste dust within the month felt back on track. :)
Fast forward 6/7 years all the above symptoms returned seemingly overnight for no apparent reason,so obviously this time I'm more convinced than ever it's terminal as I'm on hrt right ! ::)
Went to private specialist tried various other regimes,femoston,Conti ,sequi,oestrogen only ,long cycle plus utrogestone,livial. Nothing worked anymore ! Even specialist was baffled.
I have no idea why it doesn't cut the mustard anymore all I know is it doesn't.
And there you have it ! ::)
-
Wow, Dazned! I had no idea that your story was the same as the other ladies! :o
Thank you so much for sharing with us, and for being such a wonderful support to me personally.
Can I ask, generally speaking, how are you these days? Would you say for the most part that your symptoms are gone?
Hugs! xxxxxx
-
Hello again - Tempest there are loads of us on here I swear it. I won't name names of course - but I can think who we are. Dr. Currie told me it's not that uncommon, which is why I cannot understand why it isn't mentioned on ANY official documents. For example, none of the NHS literature says ANYTHING about HRT may not work for everyone, or HRT can stop being effective. Nothing. That's not right, surely? xxx
-
Also... HRT has been around a long time right? So this MUST have happened to other women before in the 80s, 90s, 00s right? All pre-internet forums obviously, but where are the women now and what happened to them? Did they eventually recover some normality (please God). Surely our consultants know of some of them? They don't mention it.
They act like it's the first time they've ever encountered it - yet HERE WE ALL ARE! And we are all seeing the same handful of consultants at some point or other.
What is going on?! xxx
-
I'm not sure I belong here as I wasn't settled on hrt very long at all before it turned on me.
Timeline:
Aside from early onset, my timeline followed the STRAW perfectly.
Ages 36-38 menstrual changes, night sweats during periods.
Age 38, periods mostly stopped. Anxiety, palpitations, trembly legs, severe flushes, fear, breasts size decreased a little.
Age 39, started hrt. First 6 months: Major emotional swings. Palpitations, flushing and trembles cured, breast size back to previous. Next 5 months: life is good. End of 39: Major depression and unwell feeling. Age 40: stopped hrt. Immediate relief, still improving and gets better every day. I am having return of some physical symptoms, either they are less severe now, or after all I've been through I'm better equipped to cope with them.
I find your histamine connection interesting, as I remember describing my feelings as almost like an allergic reaction, but I had no real allergy symptoms like sinus, itchy eyes, breathing problems or rash.
-
In the midst of the last time my symptoms returned I started mirtazapine which took all my symptoms away and I understand that taking an AD isn't protecting my heart and bones and that some find that not to be appropriate but all I care about is that I have my life back!
From being unable to leave my sofa ,unable to work,not wanting to socialise I returned to work,planned a 3 centre holiday to Canada and the States and went,bought/sold house,moved 200 miles away,drove on my own all that way ! I've managed to do things that I never thought I'd be capable of doing again. Don't get me wrong I still have up and down days but then so does everyone. So I'm grateful to the gp who persuaded me to try it and the lady on here who virtually held my hand through the start up as she too was on it,thank you. I also think that my decision to stop wasting my life on chasing the perfect hrt was the correct one for ME ! Very much against the grain for me I stopped asking "but why " ::) wasn't easy but when I accepted that this was how it is now I realised that I just had to get on with my life and that's what I was enabled to do.
Of course this is just my story.
-
It most certainly ISN'T right, Edelweiss and this makes me very, very angry! From a legal point of view, it should be required that this is stated as it's misleading women into believing its a guaranteed 'cure' for vasomotor symptoms at the least.
Time and again I've seen women very distressed on here when things are not working out after trialling various HRT's, or indeed they have stopped working (I can think of a few specific ladies too).
This is why it's wonderful that you've spoken out, and we now have this thread. Ladies are often led to believe from various sources that its THEM to blame, or they are being somehow neurotic.
My Husband (who says hello) is just home from work and has said to me over dinner 'thank God you stopped that gel again. You were looking awful and acting really bizarre again. Worse than last time'! My body just hates estradiol! I just don't understand it. xxxxx
-
Dear Dazned! Your story is an inspiration to us all that things can be better - thank you and WELL DONE YOU for doing all of those things and having the tenacity to get through. xxxxxx
Lizab, you're very welcome to be here! The histamine/mast cell connection with estrogen is interesting, isn't it? I'm contacting my Anaphylaxis Consultant first thing on Monday. They don't know I've been trialling ERT, but I was assured by two menopause consultants that it would 'be fine' despite disclosing my full history of life threatening allergies starting in perimenopause. Interestingly, this is characterised by a drop in progesterone and large surges in estrogen. I may have been missing something very obvious for me all this time! xxxxx
-
Yes Dazned you are amazing and I'm in awe of you too. There's certainly something I should take from your experience - acceptance of what's happened and then try and deal with the result. I guess I'm following you down that road, I'm just a bit further behind! But you are as Tempest says truly an inspiration and I am so so pleased that it worked for you - and whoever the woman who helped you is, well she deserves a standing ovation too. Thank you mystery lady!
Welcome Lizab, and I am so pleased to hear your story too. You seem to have found a way to feeling better and I am happy for you.
Love to all this thread tonight. xxx
-
I am far from amazing believe me !
The hardest lesson I had to learn was accepting,which seems to be a bit of a dirty word nowadays ::)
I found out that not analysing everything to the nth degree as usual was the most positive,uplifting experience ,much to my great surprise ! ;)
-
Dazned, you don't give yourself enough credit. Hugs! xxxxx
Please excuse me ladies, but messaging has been impossible for me since my DS purloined my I Pad a couple of days ago ( he does this all the time, despite having his own. Hubby steals it too. Is nothing sacred)? :o
I just wanted to quickly reach out to Lizab and say that the description of the flushes you've had - the intense ones you mention last in this thread - are what I am getting now several times a day:
https://www.menopausematters.co.uk/forum/index.php'topic=31081.0
Thank you for sharing this, as I've never come across anyone else describe the type I have so accurately. Have they decreased now? And at times, did they make you want to vomit?
Sorry to go a little off topic, ladies (just hoping these along with everything else decrease one day if I can't use Estrogen)!
Thank you in advance for indulging me. xxxxx
-
Back then, pre-hrt they didn't make me want to vomit, but I did want to lie down on the ground for the cool, like when you've had too much to drink and want to feel the cold floor, mostly right before you vomit ;D
Lately my flushes aren't as intense (fingers crossed) but I am getting nausea with them. Also, I've mentioned on another thread that if I have a headache, a flush eases my the pressure for a few minutes.
-
Yes, me too with the headache Liza! :o
Actually, I've been reading back through your posts and you and I seem to be having EXACTLY the same menopause - no kidding! And what's weird is that we felt so unwell on HRT too. That 'allergic' feeling......wow! xxxxx
-
While I hate that anyone is going through it like this, I'm going to take comfort in knowing you're having the same. The next time I feel like the doctors are missing something and I'm certainly dying, I'll remind myself that there is at least one other out there like me so it must be the menopause. I bet there are more like us out there too!
-
I was diagnosed with severe latex allergy when I was 21 and suffered my first ever allergy and anaphylaxis
1999 age 32. Hysterectomy for total prolapse (this occurred age 23 from a difficult/mishandled birth)
2000 (6 months later) severe night sweats, itchy crawly skin, vaginal dryness, lots of symptoms but NO depression/anxiety/hot flushes - dr tested oestrogen and it was low and she diagnosed premature ovarian failure. Given 1mg elleste solo, within 4 days symptoms gone. 2 weeks later symptoms creeping back in so without hesitation she prescribed 2mg elleste solo. This was my miracle tablet and I was totally, completely back to my old self
2010 - I met my partner and was having trouble catching my breath at night. Drs diagnosed allergy-induced asthma and referred me to allergy clinic (lol just previewed this and it sounds like partner took my breath away !)
2012 - extremely stressful events and 3 months later sudden onset of: light headedness, muscle weaknes, low mood, nausea, concentration problems, worsening of asthma, daily mild allergic reactions, lack of understanding simple things, crushing fatigue, there's more but I can't think right now But NONE of my original POF symptoms. Bloods revealed B12d and levels indicating peri menopause. Gave up full time work as I couldn't cope with hours, stress and being social
2015 - found this forum and saw all the different hrts to try so started elleste solo patch - within hours I had an horrendous 4 day migraine where I was in A&E twice. Started estradot 75mg, this is where I think I tell myself that things are working but I never felt right, depression wasn't as bad but still there but social anxiety was increasing
2016 - scan revealed no ovaries, apparently it's quite common if blood supply has been severed as was what happened to me in 1999. Started Testim but used very sparingly so probably didn't get the full benefits. Xmas I felt so desperate to be normal again I started Tibolone
2017 - new to Tibolone. It's given me some energy and can sometimes walk with a cocky little spring in my step, but other times I'm withdrawn and fear that I'll never be able to socialise again. I get tired but I can usually fight it unlike it flooring me previously . I still get allergies most days but one particular one has gone. Asthma attacks (I think they are mild) are daily and not caused by the trigger originally given to me. I still have no libido but I can usually respond well. I laugh again and I am so enjoying my grandchildren
I still , have never had hot flushes but my night sweats have returned but on a manageable level and as far as I know, not every night
-
I hate that you're having this too, Liza but in a way it is comforting - at least I won't feel like I have to dash off to A & E! I never imagined that the build up to those kind of flushes could last HOURS, did you? xxxxx
Gosh, Annie! You were so young to start this menopause journey! I so hope things are coming to an end for you now. The Tibolone dose is tiny (or so they tell us) but it may be that this is just the gentle amount of HRT your body needs at this stage. xxxxx
How are you going on your half dose of Tibolone at the moment, Edelweiss? You did start it last night? xxxxx
-
Hello again and already I care so much about everyone on this thread. I so want us all to feel better, like Dazned.
Thanks for remembering about tibolone, Tempest. Yes I took my 2nd dose of tibolone last night. Nothing much to report so far. I could imagine some differences but there aren't any really.
And your comment about women are made to feel it's their fault is absolutely right. I've definitely had 'that look' and tone of voice. But I am perfectly sane and entirely rational. I've just been extremely unlucky, like everyone else here.
Thinking of you Annie you've dealt with so much, bravely and optimistically. I really admire you.
And Lizab I am very sorry you feel so ill. It's just beyond comprehension isn't it?xxx
-
Aw bless you both but it's nothing more really than anyone else has suffered plus things didn't really start (nasty symptom-wise) until 2012
Incidentally today It was confirmed I have Raynauds, she told me to look it up, if the onset is after age 30 it's highly likely it's secondary and caused by autoimmune (I've said all along I think something is occurring alongside menopause) plus Raynauds started around the time the double vision did. Not sure what I have to do about this as so much has happened today at Drs and dentist but I think she said read up about it and if I'm doing all the precautions I'm to go back ? She was asking questions which I think was connected to rheumatoid arthritis but I don't think it's that x
-
Very, very early days for the Tibolone, dear Edelweiss! I'm WILLING this to work for you with every fibre of my being!
Oh gosh, yes.That look. THAT tone of voice - as if we're being ridiculous because WE don't fit the 'standard' treatment response. Demoralizing. Belittling.
They say that the internet is going to be an amazing treasure trove archive of how we live today for future generations. I can only imagine and hope that in the future, people may read back our experiences perhaps and think how primitive! How barbaric! These women were treated like this? They relied on hormone replacement made from wild yams and horse urine? Hopefully by then, there will be some wonderful scientific discovery that means that women don't have to endure many years of these horrendous symptoms. I hope. I hope.....xxxxx
-
Thank you so very much Tempest.
Belittling - yes. Demeaning - yes. If it was happening to their wives or daughters they'd sure take it more seriously.
Oh yes, if we could steal from the future and have everlasting ovaries, or other bionic bits to cure us - then all they need to do is sedate us until that day arrives - easy! :) xxx
-
Yup. I want to be cryogenically suspended until that glorious day arrives......xxxxx
Oh, Annie! So they've confirmed your Raynaud's? Are they doing a raft of bloods for you, sending you to a rheumatologist? They are the very guys for all things autoimmune. Insist your GP does! It's about time - you've been struggling with symptoms for so long and you've always said there was something else going on. Biggest, biggest hugs! xxxxx
-
I've got Raynauds too! I was warned by my GP that Utrogeston can make it worse, not sure if that's the same with Tibolone but maybe worth checking? Gloves are my best friend ;)
I had tests done and mine wasn't secondary but didn't think so as had it for years. But definitely worth a rheumatologist referral. There is medication but I refused as it can cause headaches. What doesn't?!
Xx
-
Oh edelweiss, don't be sorry for me. I'm doing so much better now! I'm not sure how I survived the road to here, but I believe my body is finally finding balance. I hope the Tibolone is the magic ticket for you!
-
I can't remember what she said Tempest. We ran way over 10 mins. I gave her list of my back problems and other symptoms that may be connected and ended up being diagnosed. She didn't say about auto immune but started asking about joints etc and wrote down a website for me to look at. I do carry gloves everywhere but it seems it happens no matter what. My granddaughter thinks it's awesome and watches for the colour to come back ! But she's referred me to a specialist to get a proper assessment of my back x
-
Good morning lovely ladies! How are you today?
I know some of us are feeling terrible, but I hope that today brings you some hope or comfort.
Via this thread we've heard of ladies who were at their absolute lowest, and got better with help and time. So hold that in your heart.
I wish each and every one of us health and happiness. xxx
-
Hi there
When talking about HRT/oestrogen stopping working - it is important to distinguish between -those of you who have experienced abrupt surgical menopause and who have been taking oestrogen for several years and then it not working (for example) and those who have gone through a normal menopause.
There are several women on here (ie the forum) who experience a resumption of symptoms several years after taking HRT and especially if they started taking it while in peri-menopause, or early in peri-menopause. This is because during peri-menopause oestrogen levels are fluctuating, but further towards menopause they begin to decline until the last ovulation. Following this time oestrogen levels continue to fluctuate a little but overall fall dramatically over the next two years at which point - or sometime after this - symptoms may recur despite being on HRT. In some women symptoms only appear for the first time 2-3 years after their last period.
So I just wanted to say that in some cases ( maybe dazned - depending when you started taking it?) it is not the oestrogen stopping working, rather the body reacting to a further fall in oestrogen. In these cases a small adjustment to the HRT dose should help. Sometimes (from what I've read on here) it is more difficult to adjust to the right dose if you have been on a high dose of HRT during peri - especially as there can be resistance to going higher eg if you are already on the maximum dose.
Just thought I should mention this before women generally start to despair - and of course this is different from the phenomenon you are describing - of symptoms re-appearing after a period of time, and not being alleviated by increases in oestrogen dose!
Hurdity x
-
We do have a surgical menopause thread already, Stellajane. xxxxx
-
Hi Hurdity, this is very interesting thank you so much for your knowledge and insight, particularly about the body reacting to a further fall in estrogen as the woman passes through peri to meno, while on HRT. In these cases blood tests would reveal the decline in E2 wouldn't they? And this can be addressed.
I'm guessing you have a medical background and you've witnessed this in practice. Could you share the incidence rates of women experiencing what you describe (falls in estrogen levels that require a 'top up' dose)? And what are the most frequently recorded levels of E2 as it happens?
Do you also have a sense of comparative numbers of women the 'not working at any level' phenomenon affects?
Thank you so much xxx
-
Very good points Edelweiss. I would be interested in reading any data Hurdity may have on these issues as they seem to affect a few women here. It would be invaluable if there was some definitive information out there.
Thank you, Hurdity. xxxxx
-
Yes please Hurdity. There are lots of women here who will want to know more, whichever category they fall into (levels falling - need top-up, or just unresponsive). This info is in short supply and would so appreciate your advice. Thank you so much xxx
-
Gosh ladies so much info I'm way behind and need to catch up! :)
Thank you all for sharing your stories and knowledge!
Will respond and post my story asap
Love to you all xxx
-
Thank you tempest for starting the thread :)
I can't think of a more wonderful group of ladies to be sharing this journey with! You are all so kind and just lovely! :-* xxx
-
You're so welcome, dear Alesia! How are you today? xxxxx
-
I think in my case, natural but slightly premature menopause, my brain just didn't like the estrogen patches. My physical symptoms were helped by the patches, in that the hrt certainly did help. In hindsight, the hrt kicked up my emotions and made me a little crazy from the beginning, then I adjusted somewhat before it really made me nuts. I did not try any other forms of estrogen.
Another piece of the puzzle may be in other autoimmune issues. I've had Hashimotos since around 2006. I know several ladies on the forum have this or other autoimmune disorders. Are we the ones that hrt turns against or stops working? Possibly no, but I can't keep straight who has what going on so I thought it was worth asking.
-
Yes I have Hashimoto's too Lizab - it's an autoimmune disorder as you know.
I searched this site for all the women whose HRT stopped working. I read their stories and I estimated at least 75% mentioned they had Hashimoto's/thyroid disease. I believe the incidence of Hashi's among menopausal women is 10-20% - certainly nowhere near as high as seems for us 'estrogen non-responders'.
I told several eminent specialists what I'd noticed. They weren't interested e.g. "there is often overlap of menopause and thyroid problems - this is the most likely reason for the association".
xxx
-
And here is what an Italian professor who has studied oestrogen and receptors for years told me:
as you seem to know, a hormone induces his effect via interaction with its receptor; therefore, the lack of the effect may be the result either of the lack of the hormone or of the lack of its receptor. Based on the fact that estrogen replacement therapy keeps the level of estrogen within normal/high values, so the lack of effect must depend on lack/resistance of receptors.
There is an extremely rare genetic condition, the "Estrogen Insensitivity Syndrome", in which the estrogen receptor is defective. In your case, the insensitivity is acquired. I would suggest that in your case the insensitivity to estrogen finds its origin in an increased resistance to the hormone, like in diabetes type 2. .
You may ask why this happens. In the case of increased insulin resistance, various causes have been suggested, among which I would primarily consider chronic or long lasting low level inflammation as in the case of the so called "Metabolic Syndrome" (which includes insuline resistance) or in auto-immune diseases (including Hashimoto's disease), and older age in general, etc. I do not think that thyroxine may interfer with binding of estrogen to its receptor, but I do not have directly searched for this effect. Finally, I am not aware of specific research on the subject of your interest, nor it iwas a subject of my research, which is more at the basic molecular level. Hoping to have been helpful, best regards
-
I am feeling a little better this morning thank you Tempest :)
My story so far.....
Age 21 ovarian cyst right ovary removed, several ops in between that then total hysterectomy 1996 aged 31 due to lots of cysts everywhere!
HRT for 21 years Oestrogel 2 pumps (prescribed 4 pumps found it too much)
Several episodes of anxiety and depression through my 30's 40's
Sept 2016 totally out of the blue ... nausea, loss of appetite, dizziness, rosacea, tingling extremities, fatigue, burning stomach, burning throat and tongue, anxiety diagnosed with gastritis, hiatus hernia given PPI,s no improvement. Continued to feel so ill and symptoms progressed to belching, vomiting, undigested food in stools, dry skin/nails, hair thinning, palpitations, burning face and neck, adrenaline surges, visual disturbances, twitching eyelids and muscles, insomnia, drenching night sweats, fear, dread, suicidal thoughts, tension, extreme weight loss, internal trembling, cold hands and feet, shivering feeling cold all the time, worsening of numbness and tingling arms, legs, memory loss, unable to concentrate, tearfulness, feeling like I'm dying or going to collapse, weakness, feeling off balance, loss of muscle strength, strange minty menthol taste in mouth, intolerance to any medication ...
I could go on, the list of symptoms is ridiculous and I felt like a hypocondriac trying to explain just how ill I felt to my doctors, of course I thought I had something dreadfully wrong with me, it wasn't until the drenching night sweats that the penny finally dropped!
I've seen 2 gastros, endo, neuro had every blood test you can think of, given 3 types of AD's which made me feel worse, at no point did any of them suggest it could be meno!
I've gone from being a happy confident creative person to a jibbering wreck, I barely recognise myself, I'm afraid to be left on my own for any length of time, I can't drive my car or go anywhere on my own, I haven't been able to work for the last 7 months and I've become claustrophobic too .... how can this happen to us and no one be able to help or give us answers??
It's a struggle to get through every day but I will not give up hope!
My heart goes out to all of you brave and lovely ladies who are suffering this horrific ride!
Love and hugs to you all xxx
-
Exactly the same reaction here, Lizab! I literally go crazy on it over time, as well as other bizarre reactions which seem to mimic allergy - increased inflammatory markers at least for sure, which have been proven by blood tests - this happens for me when my histamine levels are raised for some reason usually. I also had chronically elevated eosinophils during perimenopause without contact to an allergy trigger. I was even tested for Lyme's disease at this time as the rheumatologist just couldn't understand it.
I have lots of phone calls to make on Monday to immunology etc. This is all so exhausting when you're exhausted already!
Edelweiss, I'm fascinated by what the Profesor had to say about inflammation! :o
-
Oh forgot to add I am still using Oestrogel but it's having a strange effect on me I think. One GP gave me Femseven 50 patches to try but after a week of feeling sick and spaced out another GP told me to go back on Oestrogel but lower dose to 1 pump as she thinks I may not need as much due to weight loss and age.
I did this last week and have felt worse as the week went on so have upped to 1.5 pumps ... I'm so confused by it all I don't know what I'm doing half the time!
Love xxx
-
Dearest Alesia!! I also have all of those except the weight loss and upper and lower gastro. symptoms, tinnitus and strange minty taste. The whole lot hit after I had the ACTH test - I had some symptoms but not as many as I have now! I'm hoping it's just a coincidence - which it must be as my adrenal function was fine.
Gosh - there HAS to be some answers out there and if it's HRT, how on earth can we get your poor body to recognise it and mine to accept it? xxxxx
-
"I've gone from being a happy confident creative person to a jibbering wreck, I barely recognise myself, I'm afraid to be left on my own for any length of time, I can't drive my car or go anywhere on my own"
Alesia we are twins. This is me to a tee. I feel like I'm dying every day too. I keep trying to fight it but it's like trying to climb our of quicksand.
And every symptom except the taste in my mouth is more metallic than minty. And the roof of my mouth is both sore and numb (how could it be, but it is).
Took me a ages to realise was meno too. But then we were on HRT, and consultants were denying it, so why would we think that? xxx
-
Tempest darling yes the Prof was very interesting, and the closest to an explanation I've had from ANYONE. And I've emailed THE WORLD believe me. He doesn't have a simple solution though. xxx
-
Edelweiss I too have had the sores on my mouth with metallic taste. One time coincided with a dental appointment, she said it's almost certainly Burning Mouth Syndrome and referred me to a Maxillo Facial specialist (think that's him). This wasn't long after the double vision started and the specialist was lovely, he said he can't explain why these mouth episodes are happening and took photos but asked if I was aware I had lid lag ? I said weird you say that as eye clinic are dismissing everything about my eyes and can't give me a diagnosis but my gp butted in and I'm seeing a neurologist , he said he'd document it but no one followed it up. The lid lag was only in one eye. So I definitely have nerve and muscle problems going on and still undiagnosed, then I have this Raynauds, severe foot and toe cramps, locking index finger, ongoing late afternoon through to morning dry eyes and mouth, mouth gets so dry the gums hurt x
-
Dearest Edelweiss
We can only take comfort in knowing we are not alone! We have to keep fighting and hoping for an answer and you will be my first thought if I find one!
So are you not on any HRT now?
My kinesiologist has been through this herself with ovarian failure, she uses oestrogel 1 pump every other day and drinks soy protein shakes every morning, I think she uses Maca as well. It took her 6 years to get better :-\ but having said that we are all different!
Love & hugs xxx
-
Sorry, Alesia! I posted my reply to Edelweiss by mistake. I was somewhat distracted by 'other things' elsewhere on the forum...... :o
6 years seems to be the magic number. I know of a lady on Hystersisters who did HRT for 6 months post oopherectomy and then quit. She ran the full gamut of all symptoms and 6 years later was as happy as a clam, only remaining issues (and I mean ONLY) were dry skin which is difficult to moisturise. I've been in touch with her recently and she's still out playing golf, taking holidays etc.
Ditto a lady I've befriended locally. Surgery at 42, quit HRT 5 years later as it started to make her feel odd (her words), she said about 5 years later all was good, apart from some joint stiffness in the morning. She works a demanding job with irregular shift patterns now.
So please don't shoot yourself, Edelweiss! No matter what, ovaries or no, we can get through this - TOGETHER. xxxxx
-
It is tough, when you are dealing with long term or chronic health issues. It is normal to want answers, reasons, solutions, we would not be human if we didn't. I have done my fair share of railing against things and spent a lot of money searching for answers to health issues over the years. I made myself more ill with the stress of this searching and fighting. Eventually I reached a point of acceptance, acceptance than no one had an answer, a reason or a solution; that this was now and how it was. I had to learn to take it at face value and go with it instead of fighting it, and hope that better times could be ahead. In relaxing into my situation and reaching a point of acceptance I could let go of the stress and the fight and concentrate on the life I had.
since then things have gradually improved and I wish I had not spent so much time fighting and railing against things that I could not change. We are not promised an easy path all the way, all the time but it's what we do with it that counts. I learned the hard way.
-
Sorry I shouldn't have said that. I was joking, but I can see that in my current frame of mind it wouldn't seem like it. I humbly apologise to all my dear friends here. And the fact is Alesia kinesiologist did recover and that's good.
Thank you so much Tempest I like the stories from HysterSisters they are great and very inspiring.
And Babyjane you are SO right. Thank you for those wise words. They are absolutely true. I confess I've always had a massive problem with acceptance, in every area of life. It was part of what made me good in my work because I just wouldn't give up. I think I'd better start practicing acceptance now though.
A Sheepish Edelweiss xxx
-
I've always said that I felt much better once I'd stopped chasing here,there and everywhere,looking for some magical potion. Acceptance was hard won but boy did it feel much calmer. I wasted time in my precious life searching and that's time I won't get back ::)
-
Yes you also mentioned that to me Dazned and you're right too. And you've found a way to health and fulfilment again too. It's just when I feel unbelievably ill all day every day the only thing I can think to do is chase and search and question. My problem I know. I'm the only one who can work it through, but I am truly grateful for your advice (and patience) xxx
-
Thank you SO much, Baby Jane and Dazned!
I alternate at the moment between fighting and acceptance. On the days that I accept, I have better days. The days that are not so good are when I read posts from a certain poster here on MM and believe that I must be some kind of freak and that I am doomed to die a horribly freakish early death, riddled with heart disease and osteoporosis unless I FORCE my poor body and mind to accept something which clearly it doesnt like.
That's how it's been the last couple of days (and on and off the past year). And the more I read, the more I take these things on board, the more like a freak I feel - subsequently, the more ill I get.
I love MM for the many ladies here who are warm and kind and genuine. Annie for being my dear friend, Edelweiss who is a new friend and so kind and comforting despite her struggles. You Babyjane, who has shared your struggles and found a way through for yourself as well as tackling thyroid issues. And dear Dazned who forever has a gentle manner and kindness, and not forgetting Alesia and Lizab who share so many symptoms in common with mine.
I find it is those that have struggled the most who have the most kindness, empathy and compassion for others. And for you ladies, I am truly, truly grateful. Thank you!! xxxxx
-
I've been where you are so I can sincerely empathise with you all. I HAVE walked in your shoes to a certain extent! ::)
You,yourself wrote " on the days I accept I have better days ! " ( if I was cleverer I could have highlighted that bit from your text !!! ) ;D
So maybe listen to yourself ;)
I'm sure that you will be just great even if you can't find a hrt to suit you else there would be millions of women out there not on hrt keeling over !
Remember MM ladies represent a snapshot on life. :hug:
-
I can't remember which of the girls on this forum tried to tell me to accept what was happening. It may have been you, dazned.
It was when things first took a bad turn, before hrt, with all sorts of weird feelings and extreme hot flashes. I was not functioning. At the time the advice seemed cruel because my life was turned upside down seemingly overnight. I couldn't drive, couldn't shop, could hardly join my family at the table for meals. And with two young children, I couldn't grasp how to accept my inability to function. I didn't have a few weeks or a few months or a few years to wait for all to pass. Now, over a year later, I see that I didn't have a choice but to accept. I would have preferred to continue my roles as before, but it didn't work out that way. I have a few good friends and neighbors and family that helped take on things I couldn't manage. My children have grown to take on more at home. I still have days when I get down and feel heavy guilt that I'm not pulling my share and feel like a burden to everyone around me, but I am coming to accept and it feels so much better, and I'm gradually taking on my ld roles again. Some days I still really don't get anything done, but even as I say that, I realize it's not ot true. Now I may say I didn't do anything all day, but I actually did dishes, laundry, showered, maybe played outside with the kids, and I'm learning to give myself credit for every little thing and acknowledge my health is improving, because those ordinary tasks are more than I could do at my worst.
Pardon my rambling, I was reflecting on how crazy this transition has been. Thank heavens its getting better to the point that when I do have a spell I don't feel like it's permanent.
-
Yes Lizab we don't give ourselves credit for that domestic fairy that magically does all the cleaning,laundry,shopping,bed making,bath cleaning.......... do we ! ::)
Glad you are starting to see a path for you .
-
Oh bless you, Dazned! Thank you - your encouragement and wise words help so much! xxxxx
Edelweiss, I understand COMPLETELY why you expressed yourself that way though. I remember in 2012 there was I, happily popping this medication and that to help control excruciating pain after I had unsuccessful spinal surgery (it left me with nerve damage). Then one day.... bam! I had an almost fatal allergic reaction to a medication and my immune system went crazy, I had to stop EVERYTHING. The things that worked for me, couldn't and wouldn't work any more.
I was bereft, demented - it was like someone had pulled the plug and I was in an alien, pain wracked body that I couldn't medicate better. I am absolutely certain that on MANY occasions, I said 'shoot me now'. And I wonder if this is why now my body cannot even accept HRT.
When something happens so suddenly as it has with you and HRT stopping working like that, it's an ENORMOUS shock. You are entitled to feel all of the feelings - grief, anger, disbelief. But I guess it's whether we let these feelings consume us and destroy us, or whether we find the strength and courage to carry on.
So let's walk together, forward - and be inspired by the lovely ladies here who are helping show us that we can do this. Because you're much stronger and more remarkable than you can ever realise right now. xxxxx
And can I say THANK YOU, Alberte - for your kindness earlier and now. It really is so very much appreciated. xxxxx
-
Thank you so much for sharing your story, Lizab! As you know, I've read back through your old posts as we share so many similar symptoms.
You have really inspired me by sharing your experience of acceptance, and how you are improving. It's quite something to have insight and to say that even though you are still not 100% the person you want to be right now, that you have made great steps forward from where you were a year ago and to be so positive that things can continue to get better.
Much love. xxxxx
-
I guess I found acceptance and new tasks I do leave me europhic. Sad but true. Other half is my saviour, he always checks on his way home from anywhere if we need any essentials and always ask if I'm up to braving a supermarket (I get so embarrassed admitting that, I used to be the one texting him on my way home from work what I should pick up from the supermarket)
ill always miss who I was, I don't dislike the new me, but I did feel sorry for old new me if that makes sense.
I spent so much valuable energy searching for what could be wrong with me as many things didn't add up to menopause but then I decided if there is something else it'll present itself and I feel I'm getting closer so just will wait that one out
I'm probably not even making sense lol
Oh and Tempest, I'll always be here for you xxxx
-
You're making PERFECT sense, Annie! In the last year you've done so many things that you hadn't done for a long time. I remember your wonderful success at attending the work conference - I was over the moon for you that you braved it so brilliantly!
Thank you so much for being a brilliant friend too - I'm always here for you too (apart from when the boy's steal my I pad, and then I can't message. I wish they'd stop doing that)!!!! xxxxx
-
Lol no worries - we always catch up on the main board 😘 Xxx
-
Makes perfect sense to me too, Annie!
-
Hello, dear ones. :)
How are you all today? xxxxx
-
Ah lovely Tempest I was just thinking about you and your knowledge about immunology!
I've just had my referral through for an immunology appointment and wondered if you would be kind enough to help with what sort of questions I should be asking them and what tests I might expect to be done?
Love & hugs Alesia xxx
-
I don't believe acceptance means giving up or giving in. For me it meant finding a way (with help) through the situation to a place where I could live with it and learn from it instead of fighting it. The more you can do this the easier it is to like who you are regardless of circumstances :)
-
Hello, Alesia! :)
Most certainly! What issues have you been referred for, if you don't mind my asking? Is it generally everything regarding your symptoms, or something specific? xxxxx
Thank you so much for your kind and thoughtful words, Babyjane. This means a lot as you have 'walked the path' - any advice and insight to help us get through is so gratefully received. :) :thankyou: xxxxx
-
Morning everyone :)
After a lovely conversation with Edelweiss last night I just wanted to let you all know that although my Kinesiologist herself took 6 years to get well she has seen these problems so many times in women during the menopause, she said she has literally had women crawling through the door and that they have all recovered eventually, some only took a few sessions, others under a year and others 18 months.
So there is a light at the end of this dark tunnel :)
Love & hugs to you all xxx
-
Aww thank you Tempest so much you are very kind :)
Yes just generally the symptoms but mostly I think the weight loss and intolerance to just about every medication known to man!
I know nothing at all about immunology but my Gastro says some of it could be auto immune related which is why he has referred me.
Love xxx
-
As every woman's experience is different and individual to them all I will say is that there is no stigma attached to not using HRT if you find it difficult or choose not to use it. I tried it on a couple of occasions about 14 years ago and again about 4 years ago and both times were not a success even at low doses. My lovely lady GP felt that I was either intolerant to synthetic oestrogen or hypersensitive to it (as I am to most other medications including my thyroxine which has to be always prescribed at the same brand as even a change of brand can upset my levels).
I will never know if my experience of menopause might have been different had I succeeded with the HRT, it is not relevant to me now. I did have an iffy 10 years or so and had to give up a job I loved but I have survived intact with the help of some CBT, therapy, my family and this forum. I lurked and browsed, then joined and left, regretted it and rejoined and am glad to be here for the cyber friendship, support, sharing, offloading and advice (well most of it anyway)
I am not hung up on the osteoporosis question. My mother had a hysterectomy at 38, no HRT and lived to 82 with no osteoporosis. It doesn't follow that we who don't use HRT will all get osteoporosis. I get a DEXA scan every 3 years due to my longterm use of thyroid meds so I am sure any changes will show up there.
I think the mantra needs to be 'be confident to do what is right for you'
-
Hear, hear Babyjane! We are INDIVIDUALS and no one path is right for everyone.
I'm seeing my psychiatrist tomorrow - I'm so glad I have this lovely man taking care of my care as the one I saw previously was purely a pill pusher. I can really speak to him, and he listens and gives good advice.
I've driven myself truly mad over the last year trying to get HRT to fit me - any whiff of estrogen and my body and mind goes berserk! It's not a case of 'riding out initial side effects' for me, the same thing happens every time and gets worse the longer that I'm on it. I don't know why. I WANTED it to work so badly. I think Lizab has had virtually the same experience as me.
As regards to osteoporosis - I've had a recall for my scan and right now I don't know why, but I am going again on Tuesday. I'm hoping it's all ok, which is what I was told last time (so I'm really confused about all this, but we'll see).
Did your Mum have a total hysterectomy Babyjane, with ovaries removed? I know we have a couple of lovely ladies here who aren't using HRT and are doing fine apart from their other health struggles (recovering from cancer and multiple bowels surgeries). xxxxx
-
Agreed, Alberte! :)
How are you today, my dear? xxxxx
-
My mum had a hysterectomy at 40, kept ovaries started HRT at 45. She's 61 now and has just been diagnosed with oestoporosis and so has her sister age 57.
Just shows that HRT isn't always going to protect the bones?!
Finding alternative hormone free solutions for mind and body must be out there somewhere as there are so many women that can't/don't want to take HRT.
Good luck with your appointment tomorrow Tempest.
Xx
-
G'day ladies. Hope you're all well.
Good luck tomorrow Tempest xxx
-
Did your Mum have a total hysterectomy Babyjane, with ovaries removed?
She had endometriosis. She told me they left her half an ovary and part of her uterus to anchor the partial ovary just in case it continued to produce some oestrogen but from what I remember of her during my childhood, and what I know now, I suspect she was menopausal from the moment of her operation, when I was three. It would have been better if they had removed it all because she told me in later years that the bits they left caused her nothing but bother.
Strangely she was 38 and I was also 38 when I had my hysterectomy. She had me by caesarean for face presentation and I had my daughter by caesarean for face presentation.
-
She had one ovary removed the other functioned for 3 years before she got menopausal symptoms.
She didn't have endometriosis. Unlike me that's covered in it :'(
X
-
Thank you so much for the good luck wishes, Otes and Annie. Otes, I really feel for you! This is why we need an Endo. thread if you're up to starting one. xxxxx
We do follow the same pattern as our Mums don't we Babyjane? My Mum had a radical hysterectomy at 42 due to cancer. She had a horrific menopause, bless her heart. I so wish we had something like MM back then, but of course it was pre internet days. The only time she ever had support was when Nana came on a Sunday for tea and they used to sit and chat for hours. Her sister sailed through her natural menopause though and didn't want to know. I can't imagine treating your own sister that way! :'( xxxxx
-
Hello ladies,
Hope you're all feeliing better! I have had many of the symptoms you've described since perimenopause began, still have my womb and ovaries, I'm not on this road yet, only tried HRT for 3 months and gave up, but eventually I will have to try it again (severe hot flushes day and night). I wish you all get an answer soon and find a way to deal with this.
The immune system connection is one of many possible explanations that should be investigated. DaisyB just posted an interesting article on Hashimoto's disease.
I've not been posting for a while since my eyesight problems got worse these last couple of months and typing/reading makes me dizzy and headachey. Miiss you all!
XXX
-
Hello everyone - and hello again Menomale it's been a while. Lovely to see you on here.
I've been less of a nutcase today and saw a friend too - we actually went out :o
I hope everyone has been feeling better today. Thinking of you all and sending love
Really huge good luck to you for tomorrow Tempest - hope it goes very well xxx
-
Yo Menomale! Good to see you again ! X
-
Hi Lil
Bless your heart, that's awful it's happened to you so young
What hrt are you taking now, if any? And how old are you ?
Please, don't ever feel you can't ask a question, if you don't know the answer to something, it's not a silly question xxx
-
You are very welcome to join us here, Lil! A huge welcome from me. :)
Gosh - you've really had a tough time! I know I've been reading your posts over time about your struggles with ME as well as trying to juggle HRT - it's a really tough one and not helped by HRT's that keep being discontinued! >:(
Please feel free to join in any time - vent, ask questions, share theories! We're a very friendly group of ladies here.
Hugs,
Tempest xxxxx
-
:spin: :spin: :spin: :spin: :spin:
MENOMALE!!!!!!! Wow, it's wonderful to hear from you! I'm so sorry your eyes are bothering you - I hope this is just another phase of menopause! Damn those flushes too! I've just had a thought as you're open to lots of things - do you have pycogenol in Brazil (French Maritime Bark)? Go and take a look at the research. You might be impressed! It is reported to not only be good for hot flushes, but has proven to perform well in treating eye conditions.
Just a thought! ;)
Sending you biggest hugs, as always! xxxxx
-
Edelweiss, I'm so glad you had a better day today - yay!! AND you went out!! That's brilliant!:)
Moods? I've got 'em. Massive mood swings today - did you send them to me instead? ;) Thank you so much for the good luck wishes for tomorrow. xxxxx
-
You are very welcome to join us here, Lil! A huge welcome from me. :)
Gosh - you've really had a tough time! I know I've been reading your posts over time about your struggles with ME as well as trying to juggle HRT - it's a really tough one and not helped by HRT's that keep being discontinued! >:(
Please feel free to join in any time - vent, ask questions, share theories! We're a very friendly group of ladies here.
Hugs,
Tempest xxxxx
Thank you so much it means a lot to have others support xxxx
-
Good luck for tomorrow Tempest, hope you get somewhere xxx
-
Thinking of you Tempest and the very best of luck to you dear friend!!! Hope it's uplifting and reassuring. Do know we're all with you and cheering you on. Whenever you feel up to it please let us know how you are xxx
-
Hope you get some positive results today Tempest. ;)
-
Thank you ladies. Had a truly horrendous evening and night. Mood swings were really bad and lots of crying. It must be the dregs of the Estrogel leaving my body. :'(
I also found this thread on Hystersisters:
http://www.hystersisters.com/vb2/showthread.php't=716425&page=3
These ladies are talking about your exact symptoms, Alesia and Edelweiss - even the strange mouth taste! What's interesting is the lady who said her HRT worked until she was 46, and then it didn't work any more so you're not alone!
I hope the Psych. can help today as pretty much I have no help from the medical profession elsewhere. I'll keep you posted.
Hugs to you all! xxxxx
-
I no that feeling I had to tell the doctor I'm suppose to get a bone scan every six years which she kept saying well you can't do much anyway if they are getting worse!
Doesn't give much hope dose it.
Hope it goes well for you xx
-
I am appalled at the attitudes of these GPs and worry that it is about the cost of these tests and treatments.
Our GP is so very good and will always listen, help and refer if necessary. They are out there.
-
Ah that's good Babyjane,
I feel like over the years not really been listened to, so now I do the research and ask for something.
I was back and fourth from the hospital for four years treated for all sorts until my then partner called from work one day and said I think you have ME.
I remember going to get a book and cried reading it as knew I wasn't going crazy something was actually wrong.
When I was back at the hospital and mentioned it they discharged me and said nothing more we can do.😳
Xxxx
-
I commented on an article in the DM and a lady said it happened to her too
You can vote for my comment if you like - I'm E.
http://www.dailymail.co.uk/reader-comments/p/comment/link/204874228?ito=rcreplyemail
-
Dear Tempest so sorry to hear you had a bad night :'( wishing you the best of luck for today's appointment
Much love xxx
-
Hope it went well Tempest? Hope your ok xx
-
Tempest I too hope you're doing ok and that you were not unduly upset by the contretemps on the forum over the weekend.
I send you my love and best wishes x
-
Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it
byBarry Durrant-Peatfield
Recommended by my kinesiologist and the reviews are excellent! There is a good section in it on Adrenal fatigue too
Love xxx
-
Hello, dear ones! Thank you for asking about me.
It's a long story and i''ll fill you all in later but basically ended up in A & E a few days after stopping the Estrogel with severe tachycardia (well done to my Consultant)! >:(
The Consultant I saw in AMU at the hospital (I was admitted for one night) feels strongly that my permanently increased heart rate is due to very low estrogen levels (no surprise there - especially as I've never even been tried on a decent dose and was having absorption issues).
So, after speaking at length with my lovely Psychiatrist who now believes all my mood issues are due to lack of hormones, I will be consulting with Professor Studd. I was going to use Louise Newsome, but have found it difficult to arrange. Sadly, I can't do a consultation at distance with Nick Panay. If the ol' ticker is unhappy and doing a merry dance, then I need at least to TRY to do something about all this!
Edelweiss - how are you? I'm looking at some info. which I will post about reactivating estrogen receptors with Progesterone only at the moment for you (as Progesterone is a pro-hormone). I''ll keep you posted!
Alesia - how are you doing? Tell me - what was your highest dose of the gel? And remind me - did you also use testosterone? And are you on the Oestrodose now or using the original Estrogel? My Consultant confirmed that its a repackaged, cheaper generic version of the old Estrogel - different carrier and possibly weaker. This would make a HUGE difference to any lady without ovaries! :o
Hugs to you, Annie - always! How are your hands fairing?
Sending so many hugs to all of you - we get back up and keep on keeping on, don't we? Because we're fighters and strong, even though it doesn't feel like it sometimes! xxxxx
-
Edelweiss - NEAT GIN??? I hope the Tibolone is doing something?? And signs of any improvement at all?
Hugs! xxxxx
-
Nice to see you back. A few of us were wondering where you were.
Wishing you luck on your journey to better health.
Keep posting as you receive a lot of support here.
Mrs Brown.
-
Hi Tempest!
What a time you're having! Hopefully Prof Studd can get you sorted. I've had a family member go to him and it's made a huge difference to her.
I've been thinking of you.
With love xx
-
Hello you !!!!
We have been worried about you !
I'm glad you're back home and (once again) sorting things out hormone-wise. I really do hope speaking with Prof Studd gets you the results you so desperately need. Hands ok thank you, no white fingers this week ! Xxx
-
Hello Tempest - there you are! So sorry to hear you were in AMU. We all think the world of you and want you to be well.
Hello Annie - thank you for keeping me (almost) sane on the boards and pm's. You deserve some very very good Karma for all that.
Hello Otes - good to see you too, and hello Mrs. Brown too. Hello everyone in fact and I hope everyone will do better soon.
I'm not noticing much on Tibolone. Said to Annie and Alesia if Tibolone doesn't work I'm going to try Toblerone. ;D
Feel really sick on Tibolone, might as well feel really sick on Toblerone - it tastes better!!!!
Currently about 1 out of 10 xxx
-
Weight gain is about the same on Tib and Tob I reckon lol
Hey edelweiss, it works both ways, you may not realise but you are upbeat a lot and well, when you're downbeat it's understandable
Thankyou too (and the other ladies I'm in contact with) for being lovely ladies and we're so happy we have our Tempest back xxx
-
Hi Tempest
Lovely to see you back! Sounds like you have a lovely open minded Psychiatrist :)
I have always used 2 pumps for the last 21 years, funny you should mention the Oestrodose v Estrogel, I had always used Oestrogel (gold & white pump) for many years, then used Estrogel (aqua & white pump with white lid) as this was what the chemist gave me, but for the last 18-24 months I've been using Oestrodose (white pump with aqua lid) I had always assumed they were the same as they are all made by besins & they all appear to have the same ingredients??? :-\
So now I'm thinking perhaps that's why my levels have dropped over the last year?
Love & hugs xxx
-
Hi, Alesia!
YES!!!!!! The difference with the Oestrogel/Estrogel and Oestrodose has been remarked upon on these forums and when I used the Oestrodose, I noticed it was slightly more watery - on 2 pumps, I didn't feel the same as I felt on 2 pumps of Estrogel previously (and I developed a rash on Oestrodose that I didn't have with Estrogel).
I think folk thought - oh, here goes Tempest again! ;D But - a few others starting noticing well after the thread I posted was 'dead and buried' on the forum too! I can't remember who, but someone contacted Besins and they confirmed that the Oestrodose is bulk product that is then repackaged by various distributors in the UK (its cheaper that way).
Another lady had to increase her dose by one pump to get the same effect as she had from her previous dose too on another separate thread.
So - I would say its WELL worth upping your dose just to see! Or, you can try sourcing Estrogel, but your prescription would have to state Estrogel specifically (GP's seem to be issuing prescriptions for 'estradiol gel' which means you could get anything).
The pharmacy in London which issues private prescriptions only for Professor Studd always carries Estrogel, so I've been told by another lovely member here.
I'm thinking this is a case of more 'short changing' in the NHS on prescriptions, but its rubbish if the generics don't work as well! >:(
You may notice a difference, so it's worth as try! Give it a go. By the way, Professor Studd usually prescribes 3 pumps for ladies in surgical menopause at least (I had a prescription from him last year which stupidly I didn't fill. Its now expired)! :'(
And also.....one eighth of a sachet of Testim daily. If you haven't tried this, I'd ask for a prescription - it could make a big difference to you as you lost 75% of your Testosterone when you had the oopherectomy and with age, the input from the adrenals declines (that adrenopause again) so it could be why you're feeling so awful! Don't forget, although your lovely Kiniesologist had POF, she wouldn't have lost androgen or estrogen input completely and abruptly as you have, so you're a special case in comparison. ;)
If you want to read about Female Androgen Deficiency Syndrome to see if the symptoms fit you, Professor Studd has published papers on this and you can also find other articles on the web.
I hope this gives you a couple of things to try!
Hugs! xxxxx
-
Oh bless your heart, Edelweiss! But.....they've even messed with Toblerone too. The pyramids are smaller.......is nothing sacred??????? I'm worried about the Ripple, though.... :o ;) ;D xxxxxx
-
:rofl:
Omg do you both come in patch form ? You'd be the best prescription ever ! Xxx
-
Ah great to see you back and hope things settle for you 😘
I took your advice and asked for ustrogen (which I got) and bedol! Went to boots and they couldn't get it as manufacturing issue. 😩
So they said they would call doctors and arrange ellest solo.
Went to pick up yesterday and all confusion basically no one had sorted it, I called the doctor and as my doctor not in now till next week not sure they can do it!!
Why oh why is hrt such a pain in the butt for me!
Anyway thank you so much for the advice least have had more options to try xxxx
-
I agree with Annie, you bring a breath of fresh air and a lot pf plain, knowledgeable, sensible (sometimes ;) ;D) advice to the forum :hug:
-
I agree with Annie, you bring a breath of fresh air and a lot pf plain, knowledgeable, sensible (sometimes ;) ;D) advice to the forum :hug:
Definatly I was telling my fiancé all about you 😂 I said oh had some advice off a new lady on the site 😘 Xxx
-
Hello everyone how are you today *waves*
I hope you all have a better day today.
Before it changes I was a 3 out of 10 for a few minutes just then. This is a personal best since all this began. Still feel truly TERRIBLE, but not quite as mind-bendingly bad. xxx
-
This is a thread specifically for ladies for whom HRT has stopped working, or who have had extreme difficulties using HRT.
Anyone is very welcome to post of course as this is an open forum, but please respect that these ladies are having particular difficulties and therefore may not conform to what is considered 'the norm' when it comes to HRT. Thank you! xxxxx
Dunno if there is a norm to hrt or menopause.
So many differences and individual bodies and circumstances.
Mine's made complicated by an addiction to valium, which docs are currently working to wean me off, it acts on same receptor as progesterone, so I often doubt whether my progesterone regime is right.
Reassured by ultrasound and trans vaginal all-clear, after months and months of bladder obstruction and weeing problems, followed by GP referral and 4 cancellations later, I went and found great release to find out I had no need to change hrt.
Not read whole thread but heart goes out to women who cannot find a liveable solution t to the unpleasant changes brought about by the change of life.
-
That is a good way to describe it
I have special moments " ooh I think I'll get in the car and go to B&M (I LOVE B&M) "
Hour later : "jeez what the hell was I thinking ? Go B&M ON MY OWN :o "
So I stay at home ! X
-
where did edelweiss's chocolate prescription disappear to?
-
:'( it's gone, not sure where though
-
I'm starting to feel pants today, I can tell my body needs HRT as headaches coming on, feel so tired, hot flushes and skin looks horrible.
Why is HRT not just a simple solution for me 🙁 I really feel like a odd ball sometimes.
Think it's a case I'm dammed if I do and dammed if I don't xx
-
Maybe because it's not an approved treatment.......(naughty, Tempest)! ;) ;) xxxxx
-
I'm starting to feel pants today, I can tell my body needs HRT as headaches coming on, feel so tired, hot flushes and skin looks horrible.
Why is HRT not just a simple solution for me 🙁 I really feel like a odd ball sometimes.
Think it's a case I'm dammed if I do and dammed if I don't xx
If you did well on premique have you thought of others with the prefix Prem ? Sadly for many it's trial and error :-(
X
-
Maybe because it's not an approved treatment.......(naughty, Tempest)! ;) ;) xxxxx
Naughty but nice ;D xx
-
put it in the funny room edelweiss? I thought it was clever :)
-
I'm starting to feel pants today, I can tell my body needs HRT as headaches coming on, feel so tired, hot flushes and skin looks horrible.
Why is HRT not just a simple solution for me 🙁 I really feel like a odd ball sometimes.
Think it's a case I'm dammed if I do and dammed if I don't xx
If you did well on premique have you thought of others with the prefix Prem ? Sadly for many it's trial and error :-(
X
Hi thanks for reply, yes I have, brought on funny vision like migraines I stopped but doctor said no good as a few have brought migraines on 🙁
I'll just keep trying until I get there again think I just feel fed up today. Xxx
-
Bless you Lil, it really does get to you doesn't it? Hopefully the forum will lead you to your best combo of hrt so that you can at least feel ok, I'm happy with ok, good is a lovely bonus some days x
-
Yes ok would be good haha. Ah and thank you xxx
-
I deleted the choc px suddenly didn't seem so funny this morning :) xxx
-
I'm starting to feel pants today, I can tell my body needs HRT as headaches coming on, feel so tired, hot flushes and skin looks horrible.
Why is HRT not just a simple solution for me 🙁 I really feel like a odd ball sometimes.
Think it's a case I'm dammed if I do and dammed if I don't xx
It's probably your own cycle which will be more volatile in perimenopause. HRT at one point in the month will balance you perfectly but at another point it will either be inadequate or too strong. The key is finding something that gives you more good days than bad.
-
It's a long story and i''ll fill you all in later but basically ended up in A & E a few days after stopping the Estrogel with severe tachycardia (well done to my Consultant)! >:(
Hey, just to say that I always find my tachycardia (which only started 18m ago) goes hyper about 24-36 hours after stopping any hormones (the pill, estrogel, progesterone) and I think it's the brain panicking at the fall in hormones so it starts beating faster to keep you from keeling over as it's misunderstood the severity of why the hormones have suddenly fallen). Most horrible symptoms we get, include immune responses like with bad colds, are our brain (and blood flow) focusing everything on survival and stopping less critical parts of the body for being in balance. Like our minds! It eventually calms back down.
-
You've hit the nail right on the head there, Dangermouse! This is EXACTLY what happened according to the ward Consultant I saw. I've had 2 episodes of this now with chest pain and 2 less severe, both on stopping HRT abruptly and I'll be buggered if I'm going through this again. >:(
My current Consultant obviously doesn't get it how much stress this places on the body, and 3 of these episodes have happened on her 'watch' after following her advice. Hubby is beyond livid! >:( xxxxx
-
Edelweiss - it was hilarious! I demand you return your prescription to this forum post haste, in the hope that it may help other women to find balance.
I understand that it is not a 'one size fits all' and it may require tweaking for the individual by adding the occasional Snickers or a bag of Revels, and that one should give it time for the full effects to be noticed (mainly on the hips and an enhanced sense of contentment). ;) ;D xxxxx
-
Edelweiss doesn't realise how funny she is!
I often found chocolate buttons do something for me, not those silly little ones but the great big giant ones, like anything though you start low and work your way up as nausea is the first sign of too high a dose x
-
Hahaha Annie ;D Tempest ;D
I have sometimes px'd a box of Milk Tray, but that's off-licence.
And an entire bag of chocolate liqueurs can calm internal shaking ;D
Dr Rolo Last
Harley St
London W1
-
I'll have to make it up again... once more with feeling ;)
Letter cc to GP
Dear GP,
I saw Ms Edelweiss in my clinic today. She was complaining about everything under the sun, and frankly I wanted shot of her.
I have prescribed her:
3 chunks of toblerone, for systemic relief
1 Galaxy ripple for the local 'area', apply for 7 days starting on 1st of month
1 Cadbury's flake to be eaten in the bath, for libido
Cocoa for sleep. Make one tin last a week.
If hot flushes persist, she should have a bioidentical choc-ice.
I will see her in 3 months for a choc up.
My fee is £2,000 because I need a full service and a new set of tyres on the Aston Martin.
Sincerely
Mr Rolo Last
Consultant
Harley Quality Street
London W1
-
Nope. You have to go privately to Mr Rolo Last, Sparkle. Your GP can only give you the box, but not the actual Milk Tray. They'll also question as to whether you really DO have chocolate cravings or a sweet tooth, and are you sure it's not actually anxiety or depression? CBT or Citalopram would help with that....... (I'm being too wicked now. I'm riding for a fall, aren't i)? ;) xxxxx
-
Bio identical choc ice.........
:rofl: :rofl: :rofl: :rofl: :rofl:
-
:rofl:
We prayed for miracles and they sent us Edelweiss !!! Who needs hrt when we get personalities like you ladies !!!!
I need you all in my real life xxx
-
Choc up ! Xx
-
Edelweiss is a true gift to us all, isn't she Annie? Let's all shack up together in one big mad house until all of this is over, or until we all go completely bonkers or die of a Cadbury's overdose! xxxxx
-
Edelweiss - absolutely brilliant! :rofl: Cheered me up no end. You should be freely available on the NHS to ladies of a certain age.
-
I find CBT works well for many of my patients. It stands for Chocolate Box Therapy. You have to convince yourself that you really did mean to pick the Orange Cream after all.
I'd also like to announce a new scientific breakthrough for treatment of our male patients' Manopause - liberal applications of Nutella. ;) xxx
Next 5 patients please, I'm due at the golf club in an hour!
Mr Rolo Last
Quality St
London W1
-
:rofl:
-
Now I'm craving an orange Quality Street.
-
Chocolate Box Therapy, a masterstroke of pure genius! Have I ever told you that I love you, Edelweiss? ;) :)
:rofl: :rofl: :rofl:
-
Question is......here we are, 2 of us who's HRT has conked out, one with the estrogen levels of an 80 year old (me) and one on a baby dose of Tibolone and here we all are - cackling away like crazy! So, are we delirious from hormone deprivation or what? Or is it because we're finally telling how it REALLY is and at last its great to find kindred spirits? Or both? Or it could be the chocolate fumes...... :o :o ;) xxxxx
-
or hysteria ;D
oh how I wish I could eat chocolate but I can't. It makes me terribly ill.
Is that Tibolone or Toblerone?
-
I'm starting to feel pants today, I can tell my body needs HRT as headaches coming on, feel so tired, hot flushes and skin looks horrible.
Why is HRT not just a simple solution for me 🙁 I really feel like a odd ball sometimes.
Think it's a case I'm dammed if I do and dammed if I don't xx
It's probably your own cycle which will be more volatile in perimenopause. HRT at one point in the month will balance you perfectly but at another point it will either be inadequate or too strong. The key is finding something that gives you more good days than bad.
Hi thank you for reply,
I'm totally confused the doctor said the other week I'm post menopause but will get the symptoms till I'm least 55.
I was under the hospital from 25 but my gynaecologist left then I moved!
I think the only help I get now is off this site as no one testing my levels of this or that or seeing how much of anything I'm getting!
Sod the hrt I'm going to ask for the chocolate prescription as had enough 😩
-
I think Annie has probably been at the Toblerone to be honest, Babyjane....... ;D
I can't eat it either - but I can inhale the fumes. That'll do me nicely. ;) xxxxx
-
Wey hey I felt very devilish last night and pushed the boat out and wait for it ....... I added a quarter tablet to my half tablet of toblerone ! Xx
-
Bless you, Lil! It's been a loooong road for you already! I'm feeling your pain - blotchy skin and dry like a reptile. Screaming joints and muscles. Feelings of doom and feel like i'm crawling out of my skin (the worst - it's like a cold turkey scene out of 'Trainspotting'). Aaaaargh!
BUT - today I have been visited by the lady I told you all about (her name is Liz) who had hysterectomy and oopherectomy at 42, did HRT for 5 years and then came off because of SEVERE migraines. There she was today, aged 62 sitting in my very living room looking as fit as a fiddle and sane as a brick. I asked her whether she ever felt like she was going mad when she came off it, and she said 'I didn't, but my Husband thought I was'. Men!!! >:( It took 18 months for her symptoms to go after stopping HRT.
She is so well that she was telling me she got a letter from her GP earlier this year asking if she still wants to be on their books as she never goes to see them....... :o And she works a demanding job of split shifts (she's a community mental health nurse working in crisis services - that's how I met her).
So - it DOES come to an end. Promise! And you won't shrivel up and die.......even though it feels like it sometimes. So sending you biggest hugs, and masses of Toblerone. We're here for you, every and any day to offer support, hugs (and a few hysterical giggles).
Much love!!
xxxxx
-
Annie, you little tinker!! ;) :) xxxxx
-
Lil22 it's awful isn't it, but what a wonderful reply from Tempest - bless you darling. Come and shelter with us lot of misshapes, and sometimes we'll try and laugh in the face of our troubles.
Annie a quarter of a tablet more? You'll make Slash from Guns n Roses look tame at this rate!
I'm glad if I made some ladies laugh.
But please, don't encourage me... I've a rich seam of nonsense, and you might just regret it!
Think the tibolone might be doing something but really not sure what - less freaked out, thinking more clearly, no headache, no dizziness, and not wanting to throw self out of window every second of every day. As Bridget Jones would have said, 'v good progress'.
But still mad tinnitus, burning mouth, and I have a very hot 'fajita'! Swings and roundabouts ladies :o
Love our little band of fruit and nutcases.
And Tempest I LOVE YOU TOO! I LOVE ALL OF US! xxx
-
Bless you, Lil! It's been a loooong road for you already! I'm feeling your pain - blotchy skin and dry like a reptile. Screaming joints and muscles. Feelings of doom and feel like i'm crawling out of my skin (the worst - it's like a cold turkey scene out of 'Trainspotting'). Aaaaargh!
BUT - today I have been visited by the lady I told you all about (her name is Liz) who had hysterectomy and oopherectomy at 42, did HRT for 5 years and then came off because of SEVERE migraines. There she was today, aged 62 sitting in my very living room looking as fit as a fiddle and sane as a brick. I asked her whether she ever felt like she was going mad when she came off it, and she said 'I didn't, but my Husband thought I was'. Men!!! >:( It took 18 months for her symptoms to go after stopping HRT.
She is so well that she was telling me she got a letter from her GP earlier this year asking if she still wants to be on their books as she never goes to see them....... :o And she works a demanding job of split shifts (she's a community mental health nurse working in crisis services - that's how I met her).
So - it DOES come to an end. Promise! And you won't shrivel up and die.......even though it feels like it sometimes. So sending you biggest hugs, and masses of Toblerone. We're here for you, every and any day to offer support, hugs (and a few hysterical giggles).
Much love!!
xxxxx
Now I need tissues and a toblerone 😢 Ah that's so nice, it dose make you wonder what the future holds.
It's acne I break out on as some HRT do this, mind I had one a few years ago I think it was lival (not sure spelt it right) and my skin was awful, so she put me on the dianettee pill as used for acne and was best I'd felt in years, but every month I had a migraine, she said she had to take me off it in the end for worry of strokes I even begged her to keep me on it. Only as I felt great.
I think coming off drugs would be easier I tell you my poor body not sure what the hell is going on.
Mind I'm getting reptile arms, must be my skin starting to suffer, at 43 I didn't think I'd have to keep my arms covered they look like I'm 90 at the top of them 👵🏻
And yes bunk alone as I think I need a laugh as i don't laugh I'd end up even more crazy if that's possible 😂 Big hugs xxxx
-
Cor, I used to LOVE Cadbury's Misshapes! :o ;D xxxxx
-
Ha, me too! Those dusty, unloved, odd-shaped blobs. And I'm not talking about my boobs now!
Also you got a big lot of them for not much money. Don't go there... ;) xxx
-
:rofl: :rofl: : rofl: :rofl: :rofl:
It's like 'Carry On Up The Menopause' on here! I just heard Sid James chuckle, I swear it. Hmmm....Matron.......! ;D xxxxx
-
Haha can you imagine! Mind I feel more like I'm off benny hill running round frantic trying to find a HRT 😜Xxx
-
It's the first time I've been on here today and all I've done is sit and laugh :thankyou: :thankyou:
Laughter is the best medicine girls!
Xx
-
Whoo hoo! That's great Otes. ;D
-
Haha, eee we must laugh! I think that's one thing that's kept me half sane through this blissful journey 😬😂😘xxx
-
Press Release
New research reveals that many women are becoming choco-dominant as a result of overdosing on choc-R-T. Symptoms include nausea, sweats and a raging thirst. Some women even have to get up several times a night because their sheets are covered in discarded wrappers.
Speaking at the annual conference of Choc-R-T practitioners, leading Harley Street consultant Mr Rolo Last told the audience that this condition can occasionally be reversed by the addition of a small serving of custard creams.
In recognition of his ground breaking findings, Mr Rolo Last has been appointed Chairman of the BMS - the Biscuit Marketing Society.
Mr Last said "This research is invaluable to women suffering high choco-levels everywhere. It opens up exciting new options for treatment of choco-dominance, including the judicious use of Jaffa Cakes in the most severe cases".
For further information contact:
Tamara Benenden-yah-Actually
Pseuds PR London
c/o Harvey Nicks Top Floor
SW1
Ends.
-
Omg Jaffa cakes, doctor I'm a severe case 😂Xx
-
Dr Terry Choc Orange gave me a website to look at and studies have been done
http://redhotmamas.org/5-health-benefits-of-chocolate-for-menopause/
-
Hahahaha Annie I'm laughing out loud at the Terry Chocolate Orange link!!! xxx
-
:rofl:Well when I saw Mr Rolo, I told him I had heard a Wispa that he was advocating chocolate and that it was having a Ripple effect on sales but he was pleased that it was giving the industry a Boost.....sorry, couldn't resist ;D ;D ;D ;D
-
:rofl: Justjules !
-
Hahahahaha :rofl: JustJules xxx
-
Ladies, you are all such good value, you've kept me cracking up today! Thank you one and all! xxxx
-
I am laughing so hard I'm crying! I'm going to have to start another thread for those of us who have veered completely off the road because chocolate triggers migraines these days :'( ;D
-
Chocolate triggers a nasty pain in my back tooth for me these days 😢
-
I still have some though ! X
-
This has become my favourite forum thread and edelweiss ought to come with a health warning - risk of splitting sides ;)
So far off 'Topic' that it feels like a 'Marathon' to get back again (well I tried ::))
It has turned into the funny room.
-
Babyjane :rofl: :rofl: :rofl:
I hope you have a good day today xxx
-
:thankyou:
All the advice, help, friendship and support on the forum is invaluable but wacky humour, fun and a good time is worth a lot as well.
I don't often lol but I did this morning reading these posts ;D
-
This is my fav room too
We might all be 'fruit and nut' cases but who cares ? If I had a 'dime' for every time I've laughed these last few days I'd be rich ! Must dash, I have a bad case of the 'munchies' today xx
-
laughter does not come naturally to me (long sad story) but when it does it feels good :)
-
Babyjane that's already made my day to hear that. I don't laugh as much either at the moment but I'll always be an eejit ;D
Annie hahahaha keep em coming! :rofl: xxx
-
Makes me wish I was back on the Tibolone - kinda! No sleep AT ALL last night - burning hot, full on body aches, feel like I'm crawling out of my skin with weird doom feelings. All the fun of the fair! :'( xxxxx
-
:hug: for you Tempest
Hope you improve during the day
-
Oh Lord no Tempest, I am so damn sorry to hear that. I'm sorry sweetheart I really am.
Remember Liz who visited you the other day? You are going to get through this too. We all are.
So much love to you xxx
-
Aw Tempest 😢
I'm aching bad this past week, more than I have before and the muscle cramps, mostly hips feet and toes, are horrible, makes me wary moving the damn limbs xx
-
That lady, Liz, I am only 2 years younger than her and I can honestly say things are a lot better than they were 2 years ago, not on her level but I sleep now, 7 hours straight through most nights instead of 3 hours on a good night. Hot flushes few and far between and not overwhelming when they do appear. Energy better but not what it was (I am 60 not 40) and moods on an even keel (most of the time). I have learned a lot about myself this last year too and I almost like myself now.
We don't go back to what we were but there is definitely life after menopause. I chose not to use HRT for mine so I can't attribute it to that either.
-
Morning I've just done a morning baking your all welcome to come and sample 😀
Babyjane I was like that, my daughter said to me when she was seven what's your laugh like which broke my heart, but since I met my partner 9 years ago I spend most my time laughing.
Tempest so sorry to hear that, hope you are ok sending hugs xxx
-
I am learning to let myself laugh ;D
-
Thank you all so much for your kindness and support - it's truly appreciated! xxxxx
-
How are feeling now Tempest ? Xx
-
I've had the weirdest day, Annie! Actually - it started last night with all that I mentioned but today I've been in a deep brain fog and the normal doom feelings that happen at the same time every day didn't show up. I jolly well hope it hasn't all switched over to night time now! :o
I'll keep you posted later, if sane enough to type........xxxxx
-
Big hugs Tempest, let's hope you have a relaxing evening and a peaceful sleep tonight xxx
-
So pleased you are babyjane
And I hope you are ok Tempest xxx
-
Thank you, Annie and Lil! Oh - and please don't think I'm ignoring your lovely, kind PM'S, ladies - I can view them but can't reply on my blessed phone! >:( DS has had to borrow my I Pad AGAIN - I swear that young man eats techie devices, I really don't know how he manages it! I think its because he leaves his at friends/work/godknowswhere.
When he turns 21, I'm putting a ban on borrowing Mum's stuff - so he's got precisely a month and a half to start adulting and remembering where he left things (any future wife/partner will thank me - men are ALWAYS losing/misplacing things and then expect wives or partners to remember where they left them)! :o xxxxx
-
My son was the world's worst till his mid 20s when he became a father, then his relationship broke down. He is now in a lovely relationship and his child is now a teenager. He has made a great job of it all, so they do grow up and if you underpin them with unconditional love but don't cling too tightly they do learn and fly the nest when they are ready. Sounds like you are doing a good job with yours Tempest and Lil x
-
Thank you, BJ. :) Your son sounds like he has turned out to be a wonderful Father!
My son is fab apart from the habit of misplacing things. :) He has a great deal of empathy for others and has helped some of his friends out of some tough times in a very mature way. I'm so proud of him! :love: xxxxx
-
Hello ladies- I've been away and your chocolate replies had me giggling this morning ( no mean feat)
I was looking for some advice please?
HRT started 19 months ago with Elleste Duet ( both strengths) then got switched to cyclical therapy with Kliovance and then Everol conti.
In desperation went to see consultant privately 3 months ago and he prescribed oestrogel and cyclical utrogestan with the possibility of adding in some testim at a later stage. I thought I had won a watch but it became quite apparent that something wasn't agreeing with me ( low mood, palpitations, insomnia,headaches, itchy bumpy skin ) . So e mailed consultant and asked if I could try taking Utrogestan every other day. He said yes or I could switch to taking 200mg vaginally from days 14-28. Tried the former for a week- I was all over the place and just about to go on holiday so I've been taking oestrogel only 2 pumps daily ( still minor rashes and joint/ muscle pains) . Even although I should have added in the Utrogestan with 4 days of my holiday still to go, I really couldn't face it so started taking it on Friday. Last night was awful, a really bad burning itchy rash from the knees up all over my body. So yet another night of very little sleep ( my DHs snoring for the 12 nights we were away hasn't helped though) I feel weepy, exhausted, totally done in to be honest and although I'm due to see the consultant again in a few weeks, I'm not sure that I can take the HRT merry go round much longer. I have two questions for you lovely ladies:
1 Do you think it's worth going to see him again? ( he's talking about a Mirena but I'm 57 this year so not sure if this is what I want or need. he's also mentioned the H word although he says it's a big step and would need careful consideration) I went to him as my GP practice is useless.
2 Can you come off HRT cold turkey or does it have to be tapered off?
I'm sitting here feeling ghastly , my heart beating fast and I've scratches everywhere as I clawed myself to pieces last night. I also look about 110. So much for a relaxing holiday! >:(
Sorry for being grumpy- I just need a hug x
-
Hi Michele, I know you don't get on with the utrogestan, but do you feel good (or better) when you are taking only the oestrogel? Just wanted to clarify as I couldn't tell from your post. xxx
-
Hi I'm useless at all this but could it be the oestrogel ? Is it worth trying a different way to get it? Patch or pill form ? I'm thinking the itching could be either low oestrogen or allergy x
-
I just need a hug x
:bighug: :foryou:
-
Thanks ladies for your hugs and comments.
Edelweiss- I do feel a bit better just on the gel ( good would be pushing it) but still get the rashes ( although not as bad as when I add the utrogestan into the mix). Mood is still low though but again not as bad as when I'm on the combined therapy. X
-
Phew! Michelle, sending you biggest hugs! You really are having a time of it! I know you're seeing Dr. Perera?
From one who is ovary less and no HRT, I can say that I have moments (and I literally mean moments) of normality off hormones and then it's like I go barking mad for several hours - mainly crazy, off the scale doom and anxiety and panic attacks.
It's hard to know what to do, isn't it?
So - whilst I'm having a moment of sanity, I'm wondering if it's the Estrogel that could be the problem. Have you had levels checked to see if you're absorbing? Are you using the Oestrodose 'brand'? There have been a couple of ladies (me included) who developed a rash on this particular one - it's a repackaged bulk product for cheapness and in my opinion (and that of a couple of others), not the same as the original Estrogel (it's even runnier in consistency).
The Utro. seems to be problematic for a good few ladies - and maybe Prog. in general for you. Is this why your Consultant suggested the big H for you? xxxxx
-
Hi Michele, thanks for explaining that. Here's my take on it...
I think you need to see a doctor about the rash. It doesn't sound right and none of us know what's causing it. It would be wrong to try and guess.
I'd agree with others who suggest testing your blood levels of E2 estradiol.
If they are on the low side (sub 200-250 pool/l) you will feel bad.
And you should consult a doctor about why they are low, and how to get them up.
As you appear not to tolerate progesterone well, and may have some sort of reaction to transdermal/gel, perhaps a oestrogen only tablet, plus separate utrogestan would suit you better.
But please see a trained medic to get the right option for you.
I hope you find a solution soon.
Much love to you xxx
-
thanks ladies.yes, it's oestrodose I've been given although Dr Perera prescribed Oestrogel.
I'm quite literally wiped out and start CBT organised by my work tomorrow.I've been off work now for 4 months now and was before in 2015.This time found it seems much worse.
I've never had my hormone levels checked- maybe it's time as I'm about to go dolally.
I've also got a follow up with the triage co-ordinator for my works long term disability insurance - that'll be a laugh.i can barely remember my name!
On recent holiday, treated myself to some new Jo Malone perfume at airport.Took it into toilet , one spray and then left behind ( yeah, hope it smells rotten on you you light fingered trollope) ,lost my keycard within half an hour of joining the ship, made myself sick by drinking two gin and tonics ( who knew? ) and spent the next twelve nights wandering the corridors as I couldn't remember cabin number. Add to that the DHs snoring, made worse by a cold and my Carribean inspired wardrobe ( err, sorry...they don't call it the Baltic for nothing, I must have confused it with Bermuda)
Nevertheless, I cut a particularly fine figure with my cropped trousers, line shirts, sandals and...husbands socks
i also bought a bobble hat for good measure!
I'm full of the joys today! ???
-
and I can't spell.Used to be able two but stoopud blidy protective sex! ( predictive text! ) >:(
-
Aw Michele - I really feel for you! I sympathise with all of that (I'm the same - if I can't see something I don't think about it at the moment) and the work problems too - nightmare total nightmare.
But you did make me smile and that's about the hardest thing to do at the moment so THANK YOU and I hope your blood tests reveal a reason that you're feeling rotten and you can fix it pronto. Wishing you the VERY best of luck and loads of love xxx
-
Thanks Edleweiss :party09:
-
Hello troops! :)
So what have you got planned for the week ahead? Yet again, I have a fun packed (ha ha) stress filled week ahead.
Psychiatrist tomorrow at 12.10. Chasing the various private Consultants I've contacted, and facing GP Of Doom for a showdown on Tuesday. I never remember life being like this before the bl##dy menopause showed up. What happened to fun, frivolous stuff? :o
(Sorry - whining over).......xxxxx
-
Good luck with your appts Tempest
I have work first 2 days, babysitting next 2 days, and Friday free whoop
I have ENT next month, sinus and ears still not good
Tesco delivered my shopping Friday and I couldn't hear what the lad was saying, god knows what I was nodding to lol x
-
I had sinus problems age 18-19 when my parents bought a new house right next to a rape field, man I was ill but had no idea what was causing it and dr was saying he'd drain the sinus', I panicked at the thought so didn't go back, then when I moved out the sinus pain went!
I've had it on and off since then but nothing like I did at Xmas and since then and the 2 burst ear drums, it's just not been right with sinus and ears, I don't know what the answer will be
Ooh I'll get my bikini out and blow the cobwebs off for Friday :-)
-
It started NYE, but I'd been off colour from Xmas night
Not sure what they can or will do. Consultant is a bit abrupt but seems good
-
Well hope you can get somewhere as must be awful especially on top of everything else xxx
-
Aw thanks Lil xx
-
Been given the elleste solo 2mg wish me luck as running out of options xxx
-
Bless you, Annie! I wonder if things might heal better if you were on slightly more estrogen? It encourages healing, builds collagen etc. Just me thinking out loud! xxxxx
And very best of luck, Lil - keeping everything crossed for you! xxxxx
I'm just back from seeing fabulous Psychiatrist who has phoned GP today and DEMANDED that I be allowed to use the HRT of my choice! Hoorah for him!!! Truth is, I'm in so much pain with hips, joints etc and dried out EVERYTHING that I need it. No choice! It really is dramatic the state I'm now in physically 2 years post oopherectomy at only 48 (not to mention my permanent tachycardia from very, very low estrogen levels - confirmed whilst I was in the AMU at the hospital) :'(
I asked about 'mood problems' in case things go wonky on HRT, and he said don't worry - I'll be here for you. Seeing him again next Tuesday for a meeting with Hubby too. He really is rather smashing! :) xxxxx
-
Thank you and that's great news, he sounds so helpful. Do you no what HRT your wanting xxx
-
Great news Tempest- you just might be getting somewhere now!
Send your lovely psychiatrist down here- feel I need him at the mo! X
-
Great news Tempest- you just might be getting somewhere now!
Send your lovely psychiatrist down here- feel I need him at the mo! X
Then maybe he can come see me hehe xx
-
Tempest so glad to hear you have positive news and great that you have some fantastic support to help you through! :)
-
Oh well done Tempest !!
Lil, I had 13 fantastic years on elleste solo 2mg, hoping it works for you
Tempest, I don't know which way to turn, I honestly don't, I need a brain/confidence transplant I think, I don't know why Tibolone seems to suddenly not be working for me, I feel constantly on edge and jittery but 75mg estradot did the same to me......help ! Xx
-
Omg Annie that's great as all in reading today is elleste nightmares 😁
How come you stopped it?
Sorry to hear your tablets are not working, can you try something else? Sending hugs xx
-
Oh Annie no I am sorry. It might a temporary thing. I hope so.
Lil22 I think Annie is like me, she's tried a lot and Tib has been the best for a long while.
Good luck on your Elleste xxx
-
Hi LIl
I've no idea why they suddenly stopped working, or if in fact it was all hormonal as bloods showed low b12 at the same time, but gp wouldn't acknowledge the b12. Last year scan showed no ovaries, so could be that the ovaries started disintegrating after 13 years, I don't think I'll ever know, a gynae told me it was a 2nd menopause, and 2nd ones are nastier (thanks just what I wanted)
I've tried patches , just left me jittery. I could do :
1)Lower patches and tiny blob testosterone
2)Low dose oestrogen gel and tiny blob testosterone
3) elleste solo 1mg and tiny blob testosterone
4) stick with 1/2 tablet Tibolone
5) nothing. :sigh:
-
Oh dear it's a nightmare, this combo is literally the last to try I've pages of what I've been on and why I've come off them.
What about the new one our duvee I think it's called xxx
-
Oh dear it's a nightmare, this combo is literally the last to try I've pages of what I've been on and why I've come off them.
What about the new one our duvee I think it's called xxx
I haven't heard of that Lil , tell me more ! X
-
Same here Annie, Lil22, same here.
Why us? We're nice, normal people. We don't deserve this.
Think it's Duavive, Lil22. http://www.mims.co.uk/drugs/obstetrics-and-gynaecology/menopausal-disorders/duavive xxx
-
Hi LIl
I've no idea why they suddenly stopped working, or if in fact it was all hormonal as bloods showed low b12 at the same time, but gp wouldn't acknowledge the b12. Last year scan showed no ovaries, so could be that the ovaries started disintegrating after 13 years, I don't think I'll ever know, a gynae told me it was a 2nd menopause, and 2nd ones are nastier (thanks just what I wanted)
I've tried patches , just left me jittery. I could do :
1)Lower patches and tiny blob testosterone
2)Low dose oestrogen gel and tiny blob testosterone
3) elleste solo 1mg and tiny blob testosterone
4) stick with 1/2 tablet Tibolone
5) nothing. :sigh:
Omg a second menopause I've never heard of this what a nightmare.
I no with ME your not lacking in B12 but can really help but doctors won't do it as not lacking in it.
My fiancé has just started doing injections himself and I hope to once settled on HRT.
Are you on Facebook? I could add you to a b12 group lots of interesting info and people who are really helpful xxx
-
Yes that's it, there was a thread on here a lady tried it said its given her life back.
I've read mixed reviews but may be worth a try xx
-
Thank you so much, girls! If I could clone him, I would! He says it doesn't matter why a person is in distress or what the treatment needed is - be it HRT, talk therapy, AD's, psychotropics etc - each of his patient's is different and his job is to offer empathy and support and to ease suffering however he can. ALL of his patients love him (his clinic always runs late because he spends so much time with each patient, but none of us mind waiting)!
Dear Annie! Gosh - I think, just think you might be hitting estrogen deficiency. When I discussed Tibolone with Prof. Lumsden, she thinks this is what happened when I was on it (I hit it pretty fast as I had only been faffing with ERT, but must have had some store - it's taken until now to truly hit the bottom of the jar). She also said Tibolone can be a bit unpredictable - could it be be as your E is very low with dissolved ovaries, that it's now purely converting to E do you think, but not enough?
Are you also still aching badly all over? I've got the aching toes, soles of feet, neck and shoulders, hips etc.
Would you consider going back on the patch only, say at 25 and titrating to 50? It may just be enough, and you could avoid the jittery nastiness hopefully! And - I highly recommend talking to Diane, she gives great advice on troubleshooting if she can. She's giving me another wee call tomorrow morning.
Sending you biggest hugs - WHY CAN'T HRT BE STRAIGHTFORWARD!!! AAAAAARRRGGHH!!!!! xxxxx
-
He sounds amazing I knew a lady gynocoligst like this but she retired.
Annie I've put comment on thread so at the top again xx
-
I think I may have had 3 meno's actually, without wanting to sound dramatic. :o
I had about 6 months post hysterectomy when I had severe sweats etc., but it was never acknowledged. The sweats resolved, and I never felt right afterwards but was on a serious amount of morphine for a few years 18 months after my hysterectomy after a subsequent spinal surgery, so was probably too zonked to notice the full effects. I think the blood supply to my ovaries was disrupted at that time. In 2012/13, all hell broke loose and I started Peri proper - GP refused to acknowledge it and I was quite a way through and I THINK menopausal or coming close
to post when I had the oopherectomy. Now I'm stuck with this bo##ocks........
My psych said today, no wonder you've had enough! :o xxxxx
-
I think I may have had 3 meno's actually, without wanting to sound dramatic. :o
I had about 6 months post hysterectomy when I had severe sweats etc., but it was never acknowledged. The sweats resolved, and I never felt right afterwards but was on a serious amount of morphine for a few years 18 months after my hysterectomy after a subsequent spinal surgery, so was probably too zonked to notice the full effects. I think the blood supply to my ovaries was disrupted at that time. In 2012/13, all hell broke loose and I started Peri proper - GP refused to acknowledge it and I was quite a way through and I THINK menopausal or coming close
to post when I had the oopherectomy. Now I'm stuck with this bo##ocks........
My psych said today, no wonder you've had enough! :o xxxxx
Eeee that's awful, I've never heard of this, one is bad enough. It's good you have good support as I think that's half the battle. I've never talked to others who also have a nightmare withHRT although it's awful it's good to no your not alone.
I get really down about it as feel like hormones have ruined my life along with ME and depression.
Wish I had a magic pill to give you all 😢
But least your not alone sending hugs, we will get there in the end xxxxx
-
lil I'm on b12 deficiency and pernicious anaemia group - pat Kornic etc
Tempest yes I ache bad, stiff joints, dry mouth comes on just after lunchtime each day, palpitations /anxiety (I don't know what's what right now between the 2)
Sinus pain /headaches each day, stupid ear thing, night sweats, doom and gloom (since Friday properly)
I'm a walking disaster lol right now x
-
Ah yes that's the group I'm in to :) xx
-
Oh goodness! I hate to be the bearer of bad tidings, Annie - but that sounds EXACTLY like very low E. I have the same. It's amazing how it takes time to get there, but it does!
So - how do we get you fixed again? Do you fancy a chat with Diane? She's so good as she's an oopherectomy lady - she knows how s##tty it gets with no ovaries (and she has great contacts).
Like me, I reckon your ideal regime would be 75mcg patch (or gel equiv), 100 mg Utro. bi-nightly and a daily pea of T. This is what Diane was prescribed privately by Nick Panay and she's full of vim and vigour! If only the blinkin' NHS was flexible in prescribing this to ladies without a womb or ovaries, but oh no! They are completely stifled by their own guidelines.......Hence why I am on a quest to get PROPER treatment privately (am just waiting to hear back from Kathy Abernethy too). xxxxx
-
I'm getting soooo confused Tempest! Are you on that regime right now ? Or soon to be on it ?
I don't think my gp surgery would agree to utrogestan because of no uterus xxx
-
Oh bless you! No - I'm not on ANYTHING right now, and suffering pretty badly it has to be said! I'm going to see GP tomorrow who I expect not to agree to this is any way, so the plan I worked out with my psychiatrist (comes to something when you're working it out with your shrink) is to 'hold' on a low dose of Estrogel which he has asked my GP to ensure I get UNTIL i'm able to access appropriate treatment via the private sector.
We're being totally open about me being forced to go privately - he explained this in his call to the GP today. It's tough if they don't like it as far as I'm concerned, but who knows if I'll pull all of this off? It's tough being stuck in Scotland, or else I'd have no hesitation in consulting Nick Panay - he insists on face to face consultations and whilst I do have some finances to throw at this as my last hope, I don't have enough to fly to London back and forth for reviews etc.
I could end up just stuck on a measly pump of Estrogel after all this if nothing pans out - I'm trying to prepare myself for that. Luckily I have my Psychiatrist who is supporting me along the way as we had a very deep conversation about what would happen if I fail to get this treatment or if indeed it doesn't work. I guess we'll cross that bridge when we get to it, but there's a mountain to try to climb before that.
P.S. Should get DEXA result tomorrow. Dreading it! :o xxxxx
-
Aw I hope it's good news. I always have my legs crossed but I'll cross my fingers too for you
I'm up and down mood-wise, literally..... I can be dandy one minute and then boom then back up again for ten mins.....bizarre goings on
Saturday night I woke up in bed just as a night sweat started, I've always woken at the end of one before. It was weird, chest red hot and I could feel the beads of sweat emerging
-
Thank you, Annie! :thankyou:
Ugh - it's gross, isn't it? I really thought my body had no further surprises, but the further I am now from surgery, the worse it is for me! I had heard that for some, years 2 - 3 post surgery are worse and then it can improve but I don't like the deficiency symptoms at my age - it's all been too drastic so I'll need to try to do something for a few more years (if I can even get anything to work)! :o
Do you ever get 'the dreads' before or after a night sweat? I get one at 6am every flippin' morning, and it's pretty horrendous! I'm so sorry you're getting the mood swings too, dear heart - I've never heard you suffering from these until now since peri. None of this is bl##dy fair, is it? >:( xxxxx
-
I've had lows since all this meno rubbish started. I've left it though hoping it'll go away and mind over matter etc and it always has gone. I've had a really worrying time over my eldest lately and she's leaned on me emotionally and I've helped her all I can, I've been worried sick about her to be honest but she's getting better and I'm now flat !!!! Pleased as punch for her and it's the right way round in my mind that she gets better before me (she had a reaction to a medication she was given) but my mood is literally changing every 10 mins ! To high/low/mediocre/fighting/giving up etc. It's bizarre ! Xx
-
Same here Annie. I was best I've been today. Now lower than a worm's belly tonight. xxx
-
Oh, Annie! I'm so glad your lovely daughter is feeling better. You deserve better days too! When I started on the Tibolone, things seemed fine but went awry well into pack 2 and I ended up all over the place too (I thought - hey, what's new for me)!
I''ll never know what happened exactly with the Tibolone, but I definitely feel it was just too unpredictable and probably too weak for me without ovaries. I think you can probably get away with it at the average age of post meno., but it might just not be enough for us right now (we're both young and ovary-less after all)! xxxxx
-
Aaargh! Not you too, dear Edelweiss! Sending hugs (and special double almond Toblerone) xxxxx
-
Ah god everyone seems to be in the same boat, hugs to you all xxx
-
Thanks Tempest
Xxxx
I think Edelweiss was ok until she spoke to me tonight 😀 Its my fault Edelweiss lol xxxx
-
A sinking ship, Lil! But we'll keep each other afloat. Hugs! xxxxx
-
Annie, no way, you made me laugh out loud.
Believe me that is literally a miracle. All I've done recently is that awful grimace when you try and make your face smile but you're not feeling it inside.
I used to laugh ALL the time. But tonight I laughed cos I couldn't not laugh, and I thank you for it!
Love, hugs and chocolate chunks xxx
-
Think my rubber ring has a puncture !
-
Aw bless you Edelweiss, Together we'll drag each other through this god damn phase x
-
So glad you managed a chuckle at least, Edelweiss! I know what you mean about the grimace......xxxxx
Aww, Annie! Sending you one of those hellish floats that we had in swimming lessons at school - remember those? Damn, I hated swimming lessons! Didn't help that my aunt was our swimming teacher and I sunk like a brick.......epic fail. I was to her eternal embarrassment.
Ah, s#d it! Cadbury's Flakes and Sloe Gin all round......we deserve it! xxxxx
-
Only the flakiest, softest chocolate .......... [you R 2 young to remember that advert. ;D]. In the bath. Bubbles. Chocolate flake what more could I want :whist: ...... apart from the man with the black magic box :o
-
****NOTICE**** I just want to post a wee line to say if anyone else is reading our ramblings, why be a stranger? If you're having a tough time, for goodness sake drop in and say hello and share your woes. All welcome! (Chocolate and gin will be served). xxxxx
-
:thankyou: >hands over glass <
-
Wotcha, CLKD! ;)
I remember that ad......Oh, and where's the soap? (Yes it does, doesn't it)? ;D ;D (The nun joke? No?!? Ah well. I'll get my coat)....... ;) ;) xxxxx
-
I remember the flake advert !
You know what I love about you lot on this thread ? We start talking hormones, hrt and then chat cr&p about loads of other stuff and have a laugh xxxxx
-
this is still my favourite thread to read even though I have little to contribute to it :hug:
-
Ah me to Babyjane hope everyone has a better day today and love the fact we are all here for one another xxxxx
-
BJ, you've contributed a lot! You've had so many kind and inspiring words for us. :thankyou: xxxxx
Thank you, Lil! Off to see GP later to talk about my HRT (or lack of) after lovely psych. phoned them yesterday. Taking Hubby with me for extra 'elbow'.
How are you today, troops? How were the sweats last night and moods, Annie? And dear Edelweiss - how are you feeling? xxxxx
-
Ah that's good, yes I always think it's good to have someone with you, I'm ok I keeping getting weird pain down there if you no what I mean, it's like top inside of your leg in the middle, I had it a few years ago and had a laporscopy but said could be the endrometrosis, but then had a camera put through a tiny hole in my neck and they clamped my veins (which the metal showed up in the bone scan the other week) they kept saying can you move your bra up, is there metal in your skirt 😂Then it clicked the clamps 😳
But the last few days have this throbbing constant pain back 😩Xxxx
-
It's time......for another one of Tempest's Tidbits! (Don't groan - honestly)! ;D
Ok, here's a study showing that during hot flushes, your blood pressure drops and heart rate goes up. For some women (me included) it can take a good while to recover (who the hell knows why)! I've further researched and these peaks and troughs can greatly add to changes in mood - panicky feelings at the drops, and a lift in mood (but sometimes tears) when it goes up again. I'll fudge that info. out later (fairly dramatic changes in BP mess with the brain and central nervous system).
http://www.nejm.org/doi/full/10.1056/NEJM200410073511521
Some folk don't actually get the sweating - it's true! Or only a slight feeling of warmth but the CNS changes can still be present. No wonder we're all over the place and knackered at the end of each day and night! Oh, and you also have a drop in blood sugar at these times too. Great, innit? :o
I hope this helps - it's pretty basic stuff for all of you who are into your science but I try to keep it simple. No one wants to be bogged down with gobbledygook when we've got enough to deal with already!
Hugs!
xxxxxx
(And don't chain yourself to your BP monitors, but if you have one check it out. It's true, I've measured mine)!
-
Bless your heart, Lil! I always have a 2 week rule (well did - until I started avoiding my GP. Long story) that if it's still there after 2 weeks, go and see the GP. I didn't have Endo. but have a mass of adhesions - sometimes these give me real grief.
Do get it checked out if it's giving you trouble, m'kay?
Sending you comforting hugs - and we're here for you!
xxxxx
-
Ah bless you, good idea with the two week rule, I was at doctors yesterday but thought I'm not even going to mention it, I will give it a couple of weeks, I'm thinking may be as not had HRT hopefully will start to settle, you just worry don't you. Xxxxxx
-
Yes I perked up last night
Ah maybe I'm having the symptoms without the flush just the night sweats ?
Good luck today Tempest xxx
-
It's time......for another one of Tempest's Tidbits! (Don't groan - honestly)! ;D
Ok, here's a study showing that during hot flushes, your blood pressure drops and heart rate goes up. For some women (me included) it can take a good while to recover (who the hell knows why)! I've further researched and these peaks and troughs can greatly add to changes in mood - panicky feelings at the drops, and a lift in mood (but sometimes tears) when it goes up again. I'll fudge that info. out later (fairly dramatic changes in BP mess with the brain and central nervous system).
http://www.nejm.org/doi/full/10.1056/NEJM200410073511521
Some folk don't actually get the sweating - it's true! Or only a slight feeling of warmth but the CNS changes can still be present. No wonder we're all over the place and knackered at the end of each day and night! Oh, and you also have a drop in blood sugar at these times too. Great, innit? :o
I hope this helps - it's pretty basic stuff for all of you who are into your science but I try to keep it simple. No one wants to be bogged down with gobbledygook when we've got enough to deal with already!
Hugs!
xxxxxx
(And don't chain yourself to your BP monitors, but if you have one check it out. It's true, I've measured mine)!
Hi ladies,
Just wanted to chip in, further to Tempest's post: I had to have a series of heart checks recently and experienced flushes whilst on the various monitors. Heart rate increased every time. One nurse asked me to stop jiggling when I hadn't moved at all. When I told her I was having a hot flush she noted that my heart rate had increased fairly dramatically then fell away.
Tempest you and I discussed this a while ago, do you remember? Could it be the adrenaline surge pre flush that causes that? It causes a tightness in my chest. I suffer with the physical symptoms but thankfully not with the anxiety that so often accompanies the flushes.
Ladies, I love the way you are all so supportive of each other on this thread, it's brilliant. It very much reminds me of Machair's Mucus and Staining thread. No matter how dreadful we feel, if someone can make us smile or better still laugh, it warms the soul and makes us feel a million times better. It's also wonderful to be able to share the load on this site, it makes us feel better able to manage the garbage that peri and meno can dump on us.
Hope you all have a lovely day xx
-
This makes sense. My HFs were decreasing in intensity anyway however since I have been taking betablockers they have decreased even more. Could it be down to the BBs regulating my heartbeat? Interesting thought :)
-
I was diagnosed with Arrythmia following the 24hr monitor, they called me back for a scan as the heart was jumping about 40-140bpm even when asleep
You see I never know whether the heart beats cause some anxiety or the anxiety causes the heart beats or the silent ' non hot ' hot flush is causing the heart to jump about, whatever it is I damn well don't like it !!!
-
Ladies, thank you for this thread. It's literally made me laugh out loud at times and want to reach out and hug you at others.
I've nothing to contribute thus far but I'm having my hysterectomy this Friday. Uterus, cervix definitely going but there is adenomyosis in there too and my consultant fears endometriosis. If that's the case my ovaries and tubes will be taken too.
So plump those comfy cushions and budge up on the sofa. Room for a little one xxx ?
-
Yep claireylou put your feet up and join us and make sure you take it easy after the op,
-
Will do Annie and thank you.
I'll even bring some chocolate to munch with you all ;)
-
Ah claireylou hope it all goes ok for you sending hugs and positive vibes xxxx
-
All the best for Friday and that it goes well. I had a great time when I had mine. There were 5 of us in the ward and we got on really well. We had some real belly laughs at times, we had to hold our stitches when we laughed (I suspect it was hysteria really) and when our families came at visiting time it was like a party. Even the menfolk got on well. We all remained friends after we were discharged too. x
-
Thank you Lil22, positive vibes definitely needed xxx
Babyjane thank you for your kind words. How wonderful that you had a positive experience and remained friends, I hope I'm that lucky too :)
-
My older friend made friends with other women having a hysterectomy and stayed friends , they called it 'the womb-less club'
I met such a lovely lady when I had my hysterectomy, she celebrated her 80th birthday in there with us and she'd had a double mastectomy, she was forever dropping things and I'd get out of bed and run errands for her, I was poorly the first few days and had to stay longer than planned but we dressed up the ward skeleton and put the toilet pan on its head, that old lady said she'd had more fun in there than she'd had for years x
-
Annie what a wonderful story :)
-
Dear Claireylou!
I'm wishing you the very best of luck for Friday - we'll be here for you before and after (and thinking of you during, and sending you so many positive vibes).
Tempest's Top Tips? Big pants!!!!! I kid you not! Go get yourself some full pants in one size bigger than you usually take, as you'll probably have 'swelly belly' after the surgery for a bit. And take your own supply of slimmer pads for any post op. spotting or bleeding (don't panic- there isn't a lot) as the NHS supplied pads are still atrociously hefty and bulky.
If you get any pain in your shoulder after surgery, again don't panic! This is trapped wind from the air they pump into the abdominal cavity during surgery - God knows why it gives you shoulder ache though! If you feel uncomfortable, ask for something for this. Nature will take it'a course to get rid of it though, so don't be afraid to 'let it go' - there will be others in the same boat. ;)
Most of all, let others at home do everything for you when you get home and rest, rest, rest. And pamper yourself too!
Much love! xxxxx
-
Oh Tempest thank you so much for your kind and wise words, I really appreciate it :)
Yep I've got my big pants all ready, my boys had a good laugh at them flapping around on the line ;D
It's so lovely to think that people will be thinking of me during my op. Makes me feel less alone.
I've followed your journey for a long time and admire your courage and determination. I too wish you so much love and peace xxx
-
And i couldn't poo ! I swear that hurt more than the op, so speak up sooner rather than later if you think you're going to be bunged up, once the poo meds kicked in all was calm again
we can be your virtual hospital visitors x
-
You're very welcome, Claireylou! And thank you for your very kind words.
We most certainly can be your virtual visitors - great idea, Annie! Just remember though - no more than 3 at the bed at one time, and be sure to sanitize your hands with a glug of gin before hand (we don't have sanitizer, but we DO have a lot of gin. It's alcohol, right? So it'll do)! ;D
We also don't have grapes, but we can certainly do Toblerone if that's ok. :) xxxxx
-
ITs better if we drink the gin and then lick our fingers right ?
-
Tempest, how did it go at Drs ? Xx
-
I managed to get Estrogel. One pump a day! For God's sake! Got told off for 'questioning my Specialist's authority' as I said I emphatically wouldn't be taking Utro. on its own. GP totally dismissed the call from my psychiatrist - I mentioned it and all he said was 'umm'. Hubby questioned why follow ups at meno. clinic are so infrequent as I'm having problems, and GP said 'well, the NHS isn't a bottomless pit you know'.
So yeah - it went well. >:( I was telling Diane about it when she phoned me tonight and frankly she was disgusted! It's about what I've come to expect from that practice. No DEXA result yet, so as soon as I have it, I'll be changing practice.
I'll be telling my psychiatrist all about this when I see him next Tuesday - I kinda give up now. xxxxx
P.S. That should say STRICTLY one pump of Estrogel per day. That's what I was told. He really didn't want to prescribe it at all......
-
Hmmmmm I don't like the way your gp treats you, not nice at all
I hope you get some relief with the gel, it'd be nice to see your levels come up so you can at least give T a go. And hoping the DEXA results are good .
Xx
-
In most threads, the word 'chocolate' soon becomes prominent :D
-
Dear Tempest and Annie. I'd love to have you as my virtual visitors. You can bring as much gin and chocolate as you'd like, two of my most favourite things :)
Annie, I've already stocked up on lactulose just in case. Nothing worse than feeling bunged up :o
-
And just think on average you'll be 2lb lighter ! X
-
Now that's always a bonus xxx ;D
-
It's not just being bunged up. I found that I couldn't give even a hint of a push at first so Lactulose is great as it is a stool softener, osmotic, not a pusher like Senna is. All the very best.
-
Thank you so much Babyjane xxx
-
Slow transit is my botheration. I am fine for weeks if I still to a regular diet which I keno will work in the bowel dept and not leave me nauseas. Senna made no difference at all. Stopping my set of medication for a whole dose can ease bowel back into working more easily . I try to eat a good quality muesli at breakfast which is slow release to dis-encourage me to not grab sugary snacks mid-morning though a toasted tea-cake slips down well when I feel it necessary ;). I know that I need more walking. More slow release food stuffs. More grazing habits to re-build ::)
-
Try Fybogel- it's much gentler and it's what they give pregnant women!
-
;D. tnx - Fybogel is removed from the packets and poured straight into the compost and mixed throughly, thereby missing the middle woman - packets go into recycling :D
-
Hi, Michelle! Fybogel for me causes too much bloating, discomfort and wind. If you've just had abdominal/pelvic surgery, the 'go to' is Lactulose. It doesn't cause any of those problems. :) xxxxx
-
Gripe water is lovely but I found it addictive ;D
-
Hellooooo! How is everyone? I hope you're all doing as ok as can be expected? Sending you all massive hugs! xxxxx
-
Hi Tempest
How are you firstly ?
I took my last Tibolone Monday night, and started 1 pump oestrogel yesterday morning and the same today along with a tiny spread of Tostran.
I couldn't cope with the achy stiff joints and although the night sweats were increasing in intensity but manageable it just worried me my oestrogen intake was low. So hence why I'm starting low on oestrogel and will adapt as needed xxx
-
Hoorah! We're twins, Annie (minus the Tostran in my case at the mo)!😊
I shall be restarted one pump tonight. I've been too fed up and angry the last few days with the sodding GP business. MIL and I are going to go and register with her old practice (she wants to go back there, liked the lady doctors).
It's a good idea to start low with the gel, as I've found to my cost before. The beauty of it is that you can micro adjust if you want to. If you get fed up with applying it, you can always swap back to the equivalent patch dose as you'll know exactly what you need! Depending on absorption, I've found the following: 1 pump - 25mcg to 37.5 (over time of course), 2 pumps tends to sit at around 50mcg and so on in increments equal to 25mcg per pump. Thighs are better for stability - arms seem to absorb and 'dump' the dose too quickly and messes with blood tests if you ever want to get your levels checked.
Hope we can get along ok with this, dear heart! I'm wishing you luck and hope you start to feel the benefits soon! I have noticed after trawling the threads that Tibolone seems to 'poop out' over time for some women. For me, it never really 'pooped in', except to do strange stuff (it seems to effect the BSO ladies particularly badly)!
Btw, where is dear Edelweiss? I hope she's ok, bless her! :-\ xxxxx
-
Thank you Tempest, let's hope this works for you too. I seem to be less stiff and achy today but that I'm aware that could be me wishful thinking.
At least one Night sweat again last night but was a smaller pool of water on my chest
Edelweiss is still about but not feeling great, I'm really hoping she picks up in no time xx
-
Oh bless her heart! Is she still Tobleroning? I'm still not messaging as haven't got my I pad back yet. >:(
I find it works pretty fast! Don't worry if you have a day of feeling a bit 'body flu' and achy like in a few days. This happens every time I've started the gel and it only lasts about a day or two. It's just everything 'plumbing up' and i didn't find this on the patches. We're pretty much starting from scratch again aren't we? :o xxxxx
-
Yes Edelweiss (to my knowledge) is still Tobleroning bless her.
Hope you continue to manage Tempest on the gel
Im sick of saying "so far so good" so I'll just say I'm ok today, and take it a day at a time. I'm fed up with headaches too and I've just taken sudafed as I can't work out any time if it's head ache or sinus problems so I'll see in half hour as nurofen didn't work earlier
I don't feel as fat but surely that's too early to notice OR it's that I don't feel bloated xxx
-
Oh, bless you! Yes, we'll take it one day at a time together. :)
It's curious, but a lot of ladies over at Hystersisters say that low estrogen causes bloat (as well as too high, of course)! No wonder they call it the 'hormone jungle' over there! I so hope your headache clears soon - do you think it could be a knock on of the ear problems, or maybe low E over time?
It's BOILING here today, btw! 28 degrees - that's unheard of in our neck of the woods. The sweats tonight are going to be a real challenge for sure! I hope yours continue to get better and better, dear heart! xxxxx
-
Oh Tempest, us Scottish gals are not used to this heat. I've just come in from the garden and despite the windows being open most of the day the house is so warm. Summer nighty for me tonight with the window wide open.
Trouble is hubby feels the cold being diabetic. He will probably wear his socks in bed.....sexy or what lol.
Mrs Brown
-
Tempest isn't it strange all the symptoms ?
Sudafed has helped the headache more than nurofen so I do think it's ear/sinus related. It just doesn't seem to fully heal. The eardrums get sore periodically throughout the day. Not long enough to drag me down but enough to notice and the ear/sinus pressure but I see consultant on the 19th June.
An observation I have noticed today, it's the first day in months my dry mouth hasn't been as severe, I still get nocturnal dry eye but that's been going on nightly for a couple of years now and coincides roughly around the time the double vision started. Definitely aches and stiffness not as bad but I had a deep nap this afternoon but that could be that I had a busy day yesterday and a late night/early morning
Xxx
-
Phew! Mrs.B, its a SCORCHER!!! Taaps Aff day to be sure, and tomorow is going to be even hotter! I may have to ditch my goonie all together! ;) xxxxx
I'm hoping some proper estradiol will help the healing better for you, Annie! It helps build collagen of course. :) Also, if things have got dryer in general, it could cause sinus pressure I think, maybe secretions aren't as free flowing and it's causing the bunged feeling. - every part of me is like the blinkin' Sahara nowadays, its vile!
I was also reading how low estrogen actually changes the shape of the eyeball (!) - good grief!
I'm so glad you got a wee nap though - if I ever manage a nap in the day, I know I will have cracked it! Sleep is now 4 hours if I'm lucky. And with this heat.....As Mrs. B says, Scotland isn't used to this at all! We'll all be boiled like lobsters! :o xxxxx
-
I've not been out in the sun apart from visiting my daughter briefly today but I've loved it xx
-
Hello hello everyone!
I'm here, just about, although I am totally convinced Mother Nature has turned against me and wants to desiccate me. Every bit of me is hot/dry/sore/aching/breaking off and/or sagging. My upper arm skin looks like a 100 year old tortoise's neck - one that's neglected its skin care routine, that is. My thighs are the colour and consistency of porridge in a freezer bag. And my Elizabeth Regina could be confused with the Gobi desert - except the Gobi desert has more visitors (and more camels, to be fair).
Little ray of sunshine, aren't I?
Hope everyone else is or will be well and happy soon. I keep dreaming about that day. Love to all, you are all so amazing, brave and generous. Thank you very, very much for helping me through this rough patch (understatement of the century) and giving so much support and kindness when I needed it most. I hope I can do the same for others, as I feel I've taken much more than I have given.
Here's to happier, carefree days - we all deserve them so much! xxx
-
Oh nah nah nah nah
You've given and do give so much more than you give yourself credit for. You're a trooper lady and we WILL do all we can to get you through this and out the other end so you're all healed
Xxxxxx
-
:spin: :spin: :spin: :spin: :spin:
MENOMALE!!!!!!! Wow, it's wonderful to hear from you! I'm so sorry your eyes are bothering you - I hope this is just another phase of menopause! Damn those flushes too! I've just had a thought as you're open to lots of things - do you have pycogenol in Brazil (French Maritime Bark)? Go and take a look at the research. You might be impressed! It is reported to not only be good for hot flushes, but has proven to perform well in treating eye conditions.
Just a thought! ;)
Sending you biggest hugs, as always! xxxxx
Hi ladies!
Sorry for the absence, I'm definetely lazy these last couple of months... tired and helpless, but alive! Chinchilla (the cat) is monopolizing my free time lately... ;D only joy these days.
I hope you all are getting better or at least have some great days amongst the menopause nightmare.
Huge hugs to you all, dear ladies!
XXX
-
For me personally Edelweiss, you have supported and helped me more than I can ever thank you for! You made it possible for me to make contact with Diane, and she's been an enormous help to me. :thankyou: :thankyou: :thankyou:
But hey, lassie - we need to support YOU and get you well again, as Annie says! Are you still on the Tibolone? Is it doing anything for you do you think, if so? I haven't forgotten about my info. on using prog. only to awaken receptors - I'm still sifting through research stuff and things.
Gobi desert here too - just seen a couple of vultures circling over my dessicating carcass, which is worrying...... :o I don't even want to talk about what's going on with mood either - up and down like a bedouin's tent flap.......
Sending you the biggest of hugs, from a Scotland that's more like the Sahara today (heat here is RIDICULOUS for this part of the world)! xxxxx
-
Oh, and Annie - just heard from one of the ladies over at Hystersisters who contacted the chemist at Besins who make Estrogel. Each 1 pump dose DELIVERS 0.35mcg over 24 hours approx. depending a little on application/absorption. So now we know......xxxxx
-
Thanks Tempest, that's all I'm using right now, 1 pump and I didn't wake through a night sweat last night, not saying I didn't have one but it certainly didn't wake me x
-
Hey, Menomale!!!!! Sending biggest hugs to you and Chinchilla from me and Haggis the Chinchilla who is an actual Chinchilla, not a cat. Except he thinks he's human. ;D🐭
Please don't be a stranger - we miss you!
Hugs!
xxxxx
-
HELLO, dear Tempest,
I'm lurking around ;D I think of you everyday, but bad eyes are preventing me from computer screens and I'm afraid this has nothing to do with menopause, I was born with a lot of eye problems :(
Chinchilla says hello to Haggis, the human chinchilla ;D
XXX
-
Yay! Thats great news, Annie! I told you it starts working fairly quickly. :P
I managed to sleep for 6 hours solid even in this heat! I put mine on in the evening though - I noted Cubagirl always used hers then and she had no problems (she used 2 pumps). She's an oopherectomy lady as you know, and told me yesterday on one of the threads that 50mcg patches were always too much for her. She now uses only a half of a 0.25mcg twice per week. I personally think we can't make enough of our own prog to offset the high estrogen doses. A lot of the ladies over at Hystersisters seem to do so much better on lower doses too. I think once you go over 50, that's when you need to add prog. Or else you end up a gibbering basket case.
Diane said that once she reached 75mcg, this was when she had to add Utrogestan. We learn as we go, don't we?
xxxxx
-
Hi Menomale ! Nice to see you back :-)
It's making me wary to use testosterone though on such a low oestrogen dose, decisions decisions ! X
-
I know Abby uses Tostrim with her 37.5mcg patches under her Consultant's advice. Maybe ping her on FB and she can give you more info.? If you wanted to increase to 2 pumps in a couple of weeks, you could see how you go to be on the safe side? I know one of Studd's ladies was ok to use it with 2 pumps (I think it was Niamh). Abby added hers after being on the patch for a full month.
I would probably hold off for now as you probably have negligible E in your system. I know Warwick tested 'undetectable' for E just slightly after coming off Tibolone and changing to Angelique, but that's no real surprise as Tibolone doesn't register as estradiol on blood tests as of course it isn't estradiol! xxxxx
-
Hi Annie !!! Nice to see you're getting rid of the night sweats, I'm still having 5-10 hot f******lushes night and day :P
-
Thanks Tempest, I'll keep going with the 1 pump for a few days and see how I get on, then gradually increase by halves of necessary. Then add T in later
Menomale, I'm not counting my chickens just yet ! Xx
-
You're a wee soul, Menomale! (Throwing more Scottish at you there)! ;) xxxxx
I'm flopped on the bed just now having just applied my gel, Annie. It's drying almost on contact in this heat so I'm not sure how that effects absorbtion! :o
By day 9 last time, I noticed quite an appreciable difference on 1 pump. I always get wired on it at first, so as I really need to be using something I will need to go very slowly.
I'm seeing my Endocrinologist next Wednesday and he really wants to see me back on a low dose of estrogen at least as it helps insulin resistance. I am having my 4 hour glucose tolerance test done then and sincerely hope i haven't already developed insulin resistance! I'll be gutted as I eat very healthily too (I know Abby's consultant put her on Metformin to address this, and this is a great part of how she's managed to lose a good deal of weight now). xxxxx
-
just catching up.Tempest you sound almost like a native ans Edlweisa, * spellcheck - i like it better * you have made me laugh so much with your descriptions that I've just abour to wet myself.Gives a whole new meaning to camel toe ( or just my luck, moose's knuckle when I start on the big T. So a wee badly Scottish wummin who has an interesting front bottom appendage and speaks like Brian Blessed ( or maybe even Rab ;D C Nesbitt)
-
Moose's knuckle....... :rofl:
Michele, are you back seeing Perera privately if you don't mind my asking? If you do manage to get the T from him, then I'm booking to see him. I know I saw him before at Stobhill but honestly - I'm going around in circles. No one else can or will consult at distance except Studd. I have to book a £125 consultation with one lady before she'll even tell me if she would be able to issue a prescription! Whew! I'm not a bottomless pit of cash.....!
If he's obliging, I'll try hardest to raise my Estrogel dose over a few weeks. I need the T - I know my levels are super low and I think it's what's missing regarding my well being, mood and energy.
I liked Perera - he was very pleasant and jolly - and handed me a lot of paper hankies when I was having a good bubble! xxxxx
-
No problem Tempest. I'm due to see him next Saturday at the Nuffield. He didn't seem to have any issue with prescribing it but said to see how I get on with the oestrogel and utrogestan ( not very well but I'm going to speak to him about moving to long cycle) before maybe adding it to the mix.
Waited nearly 50 mins to pick up my prescription at docs today following telephone consultation on Wednesday- he left prescription or wrong stuff and they kept me waiting for yonks before eventually givnng me right script. I complained to practice manager but I'm changing my practice when I'm feeling better ( probably never! )
I'll let you know how I get on xxx
-
Hi everyone!
I've not been on for a few days so catching up :)
I started my T 4 weeks after the oestrogel with no problems/side effects at all.
Hope everyone's enjoyed the sunshine today!
X
-
Flippin' GP's, Michele! >:( As soon as I get my DEXA result, I'm changing mine!
I'm sure Dr. P will work with you - I felt he had a lot more empathy than the Consultant I'm seeing now, and that goes a long way with me! I hope things go very well at your appointment. xxxxx
Hooray, Otes! I'm so glad you're getting along well with the T! Please do give us progress updates, won't you? xxxxx
-
I think it is a shame that so many of you are having to pay for what ought to be available from your GPs :(
-
It's awful, BJ! I can't even get Vagifem out of mine. >:(
Anyway, BJ - how has your week been? Are you keeping OK at the moment? xxxxx
-
yes thanks, just limiting time online as having problems with back and shoulders. I have CFS and there have been mutterings over the years about Fibro but I don't fit all the criteria for that so it has never been formally diagnosed like the CFS. The last 3 months have been too busy and I want to feel better for our holiday in 3 weeks time :)
-
Tempest can you get DMs today? xxx
-
Certainly can, Edelweiss! Lots of catching up to do too! Just got I pad back from DS. :) xxxxx
-
Bless your heart, BJ! Yes - rest as much as possible. I hope your holiday gives you a boost! Hugs! xxxxx
-
Morning all, not been on last few days so catching up, was all going well but yesterday felt really flat only seven days on elleste so early days.
Annie you probably have but I'll mention have you tried sterimor and the nasusal flush think it's called Neil med? Xxxx
-
Morning all, not been on last few days so catching up, was all going well but yesterday felt really flat only seven days on elleste so early days.
Annie you probably have but I'll mention have you tried sterimor and the nasusal flush think it's called Neil med? Xxxx
No Lil I've never heard of it ? Do pharmacies have it ? X
-
Yes boots it's a nasusal flush I'll pm the exact ones xxxx
-
Edelweiss!!!!! Where are you? Are you ok? I'm worried about you. Please pop by and let us know how you are, if you can.
Sending much, much love! xxxxx
-
I spoke to Edelweiss a couple of days ago Tempest, she was ok xxxx
-
Phew! I was worried to see she hasn't posted in a while. I know we all need a break from here and disappear from time to time (i'm the worst culprit) but I know she's struggling, the wee soul that she is.
Thank you for letting me know she's ok, Annie!
Hugs! xxxxx
-
i noticed she logged in on 4th June. Sometimes I just read and don't post :)
-
Me too, BJ! Usually during the 'dark times'......I'm trying to learn a strategy of 'this too will pass', but it's tough isn't it? xxxxx
-
I've just noticed lovely Alesia hasn't been around for a while either! I know she had a referral to immunology and do hope she's ok. If you're out there and reading Alesia, please do pop in if you're feeling up to it and let us know how you're doing.
Biggest hugs! xxxxx
-
Tempest you continue to amaze me how you keep track of members and their situations and reach out and care for them. You are a lovely lady x
-
Oh, what a lovely thing to say! Thank you so much, BJ! And biggest hugs to you. xxxxx
-
Hello lovely ladies!
Sorry I haven't been around as much, and thanks Tempest for asking after me, and Annie for letting Tempest know I was OK.
I'm pleased to say (and I hope I'm not tempting fate here) that I've been feeling a lot better recently.
Thanks to Alesia I've been seeing her natural medicine lady, Claire Snowdon Darling at Balanced Wellness who has given me loads of different supplements and I feel so much more like me. Claire has had her own health challenges and really understands what it's like to have a non-standard illness like we have.
In 3 weeks I've had some great improvement. The roof of my mouth has healed up, whereas before it felt like I'd burned it with pizza all the time. So uncomfortable. It was red raw and broken skin before.
The bad taste has gone. I was going to bed with mints in my mouth because I had such a vile taste. I don't feel dizzy any more and I don't feel sick.
I can take a nap in the afternoon - had 3 so far. This feels close to miraculous.
And I've slept for more than 2 hours, and in the same bed as my darling man for the first time in 6 months. Oh the joy of that. It was wonderful.
i can concentrate more at work, whereas before I was convinced I'd lose my job, and I'm much more focussed and feeling I can do stuff. And I've laughed as well - unbelievable.
I wanted to do things this weekend just gone I went shopping for clothes. Before it took me until after lunch to get out of bed.
I am starting to think I might be able to get my life back. It's such a wonderful thought, i'm scared to think it in case this is just a good blip. I know that we can get fluctuations so I don't want to get excited and I'm certainly not showing off, but if this gives anyone else a bit of hope or encouragement I'll be very, very happy.
Just to get some respite is an amazing thing and I'm so very grateful to Alesia for introducing me to Claire.
I'm so grateful to all of the wonderful ladies here too - Alesia, Annie, Tempest, all of you who been so kind and patient.
If anyone wants to know more please DM me and I'll tell you. I think Claire does phone consults and helps women with diet and supplements over the phone.
Loads of love xxxx
-
EDELWEISS!!!!!!!! Oh my GOODNESS!!!!! How absolutely wonderful to hear from you, and what heartening news to hear you're feeling a bit better. Long may this continue!
Funnily enough, I looked up Claire's website last night after posting my note here to Alesia - I'd love to know more about Claire's work as I'm very nervous that HRT isn't going to 'cut it' for me completely (my past track record has been awful, albeit that I haven't previously had TRT).
I can't tell you how much this has made my heart sing - you so deserve this and I'm so glad you managed to snuggle up with Hubby too.
Much, much love! xxxxx
-
Thank you so much Tempest!!!! I can't quite believe it. It could be a short respite, who knows, I have to be ready for ups and downs. But I've experienced such a change the past 3 weeks, I feel this is helping me. Hope to meet Alesia next time as we are there on the same day - a bonus! Hope you find your answer Tempest you so deserve it too. I know how much you've suffered. Wishing you only good health and happiness xxxxx
-
Aw Edelweiss you're back !
Really really glad things are going well for you. Long may it continue
I feel complete, all 3 of us back in the room together (mwah) xxxx
-
Hooray, Annie!!!!!! :) :) :) :)
How wonderful that you may be meeting Alesia too, Edelweiss! Do pass on our love to her if you see her. Are you taking lots of stuff for adrenal support? I'm guessing this would be a big part of it? [[[[Here goes Tempest again - obsessing about adrenals]]]]......... ;D xxxxx
-
I have the allergy symptoms and changes in my mouth. How are you finding tibolone for this? Did you gain weight? I've just switched from the pill to HRT (estrogel and utrogestan) and can't believe all the side effects and symptoms that I have.
-
Bless your heart, Katia! You do sound like you're struggling with this combo. Sometimes its hard to figure out what are unresolved menopause symptoms on hrt/other unrelated health issues/HRT side effects.
A good suggestion I follow now from the hystersisters website is to start a journal of symptoms and HRT tried. Dose changes/ weekly progress diary etc. That way you can get a picture of what's working and what isn't over time - it's easy to get confused. And its a good thing to take to your GP if you need to discuss anything. Just remember that the first 3 months (says she - who has been guilty of NOT heeding this advice) are very up and down -side effects will be settling as well as your body adapting to change. Think of it like trying to turn a battle ship!
We are always here to help if we can - or offer support and sympathy. Never be afraid to pop in for a chat or to ask questions. xxxxx
-
Mine seemed to do better with the pill tha. With the HRT. I wonder if the synthetic is rejected less as we are not trying to (chemically) match the body as much.
-
Hi I hope you don't mind me joining in. I haven't been on this forum for a long time but just need to talk to like minded ladies again & not try & go it on my own.
My history is:
Feb 2009 started perimenopause. Felt ok
October 2009, started with all the horrendous symptoms. Started HRT tablets, didn't feel good on them & the progesterone side made me crazy.
Jan 2010 saw private consultant & he gave me oestrogel, testogel & utrogestan. This didnt work either.
May 2011 had a total hysterectomy & have tried lots of different HRT patches, gels, tablets & lastly was transbuccal where you dissolve the tablet between your gums & still no joy & so 5 weeks ago came of HRT & struggling with withdrawal symptoms & praying that they are just withdrawal & wont last a long time. Sorry for a such a long story
-
I was hoping that you'd join us here, and you are so very welcome Paisley! xxxxx
-
Tempest I think your right. I am not sure estradot agrees with me, I've blown up like a balloon and my face has gone gaunt. I had no health issues at all. What I'm unsure of is how much is menopause symptoms, how much is from the drop in hormones from the pill and how much side effects from the gel/Utrogestan. I've lowered the gel to two pumps and stopped the Utrogestan for. Few days to see if the bloating goes. At the minute I feel I'm trying to make something work that may not be working. It's tempting to just go back on Femodene for a while. I'm a bit old for it, but I wonder about taking it every other day. It seems a better choice than going in circles trying to find something that may work. I just wonder if the synthetics work better for some of us than the bio identically? I'm thinking my body may process something that's different better than something that's almost the same. The rashes I know are hormonal, but I'm not sure how they connect.
Paisley how long have you been off HRT? I think when I went on it two weeks ago and had a horrendous time some of it was withdrawal from the pill. Now I've tried the HRT I find the pill controls symptoms much better and has a lot less side effects. It's so tempting to cut it down and make a HRT dose :)
-
Thank you Tempest. I am going to have a good read of all the posts xx
Hi Katie I have been off HRT for nearly 6 weeks now. I was on the pill years & years ago & it didn't give me any side effects like all the HRTs have done. Can't explain why not. I have learned though when I messed around with different HRTs & doses it gave me massive fluctuations. Xx
-
Sorry, that should be estrogel
-
Wow, just finished reading all your posts. They are all inspirational. Makes me mad though that we all have to suffer like this in this day & age. I also think that some doctors are useless & haven't a clue with the menopause. I found all my doctors in the U.K. where useless when I lived there because I wasn't a classic case. The doctor gave me HRT & was very surprised when I went back cos it didn't work & made me feel like a freak or crazy person. After that all he could offer was ADs. In the end I stopped going to the GP because he had nothing else to offer me.
-
PAisley, where are you now? I found them better in the States. To be hones I'm just as disillusioned wi the consultant. I emailed him about bad fluid retention and he just emailed back to say the studies show no evidence. It was no help at all. I'm at the point where I think cutting the pill into quarters is a better option
-
Apologies for my bad typing I'm sat in the sun :meltdown:
-
Hi Katia, I live in Spain & never been to the doctors here for menopause. I just feel disillusioned with them all. In UK my GP was useless, I went to see Dr Studd & because his regime of oestrogel & utrogeston didn't work for me he wasn't interested & quite abrupt. The specialist who did my hysterectomy wasn't interested when the different types of HRT didn't work. The best advice I have ever got was doing my own research & sites like these with like minded women who know what you are going through. This site gives far more useful information than any doctor I have been to does. I haven't posted for a while but I have still been looking & it is very helpful.
-
Paisley, the consultant I saw immediately pulled out the gel and utrogestan and said they are identical to what we naturally make. I'm not a believer of natural necessarily being better. If you had no problems with the pill, maybe try a synthic HRT. I would go back on Femodene for a while, but am considering an overseas move and Femodene isn't available there, so it's not a long term solution for me.