Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: paisley on June 16, 2017, 06:54:10 PM
-
Hi I haven't been on here for a long time. Quick history. I started Perimenopause Feb 2009, didn't get symptoms until Oct 2009 & when I got them I really did. I didn't get really bad flashes I got more the mental symptoms. In May 2011 I had a full hysterectomy. So from 2009 until May 2017 I have tried every type & make of HRT there is to try. I have given them all a fair trial & not one of them has helped in any way, in fact some of them only made me worse so I have decided enough is enough & 5 weeks ago stopped my HRT abruptly which is probably the wrong thing to do. After 4 weeks I am starting to get the withdrawal symptoms, ie anxiety, dizziness, hot flashes etc. Lots of people have probably asked this before but has anyone else been in a similar situation to mine & stopped HRT & felt better. I am hoping that these are only withdrawal symptoms from being on HRT for a long time. I live in Spain so the heat does not help the flashes & come back on to chat to like minded ladies as here in Spain it is ver hard to discuss. Thanks
-
I think Taz stopped HRT suddenly so she may be more helpful. I stopped it slowly and it took about a couple of months to settle down. It messed with my sleeping pattern totally and I did have a few very warm moments. Stopping it did not improve or make worse my anxiety which continued as normal!
-
Hi Paisley- I've been off it 6 days now. I halved my oestrogel dose for a week then just stopped. I was on utrogestan too and I thought this would really work as I had been on 4 regimes previously- none have worked and I've felt increasingly unwell on HRT for the 19 months I've been taking it.
Mentally I seem lighter and more like myself- I'm actually sleeping a bit better and feel cheerier than I have for ages.
Early days I know- downsides are feeling a bit hot, the odd low grade headache but I'm getting quite a lot of muscle pain/ weakness. I'm going to persevere though. Bought myself some menopausal support supplements and a can of Magicool spray.
Keep posting and hope it settles soon x
-
Hi thank you very much for your replies. It helps so much to talk to others in the same situation & have really missed that over the years. Bramble hope you are doing well of HRT & Michelemabelle I hope you continue to do well off HRT. I am really hoping that after I have got over the withdrawal symptoms I will feel better, well praying actually
-
Hi paisley - I have tried both ways. I have found that it makes no difference to me whether I stop cold turkey or gradually taper it off over a six month period. I felt ok for the first month but after that I found that by the end the third month without HRT my symptoms were at the same level as they were before I started HRT. I have not had the patience to persevere for longer than six months off it to see whether the symptoms will go away.
I am 63 now and have been on HRT for almost ten years. I intend to stay on it for as long as I can but I hope that you will find any symptoms you have resolve themselves quickly.
Are you still going to use a topical HRT for any vaginal symptoms?
Taz x :)
-
Hello paisley.
We sound similar. My first hint of the meno was in 2008 but it wasn't until 2010 when my periods suddenly stopped that I was hit by a whole range of symptoms. Naively I believed that the process could only take a few years so I struggled on but after three years things were getting worse so I asked for HRT. For the past four years I have been using various forms of HRT but nothing has really done the trick. Even the basics like flushing and sweating have continued! I am seriously thinking of giving up again and seeing how I feel.
Whatever I decide to do I will update the forum so that we can help and support each other.
Take care.
K.
-
Thanks. Yes Taz 2 I agree if I found a HRT that worked for me I would never come off it but seeing as I haven't I might as well not be on it. I don't take anything for vaginal atrophy & to be fair it isn't really really dry down there. I can cope with that.
Yes Kathleen you sound like me. I would love to know why HRT works for some & not others. Yes that's why I think these forums are good so we can post our different experiences. I hope to report back here as a new woman in a couple of months
-
Looking forward to hearing from you Paisley- goodness knows why it doesn't seem to agree with some of us. We are all different but it's good to know how others are doing.x
-
Dear Paisley! I'm a surgical menopause lady too and wondered how you were doing nowadays as you hadn't posted for quote some time.
I'm so sorry that you've never found an HRT to suit you. I'm really struggling too and my surgery was over 2 years ago now.
What was the last HRT you used? I read in one of your old posts that you also added Testosterone at one point - how long did you use it for?
Off HRT I feel more like 'myself' with more energy but get awful adrenal surges, panic attacks and crying jags with almost total insomnia, hot flushes and night sweats. On it I feel flat, depressed, grinding anxiety and mood swings. And bloated.
I feel your pain - I really do! I'm just starting back on a 25mcg patch under Dr.Newson and increasing gradually, adding testosterone in when I have been on the patch a while and possibly adding progesterone in later if the anxiety shows up again. I'm not looking forward to all this, if I'm honest! If I had the choice to go without I probably would and will again if this all falls apart - I've put my body and mind through so much already!
Sending biggest hugs your way.
Love,
Tempest xxxxx
-
Hey, Michele! {{{Waves}}}
So you're feeling better? I'm so glad, hun!
Hugs!!! xxxxx
-
Hello again paisley.
I've just seen your reply to Taz2 and realised that we have yet another thing in common because I don't have VA either. Obviously the nether regions are not what they were but I have never had the difficulties some ladies report and never needed topical oestrogen, my bladder is okay as well. As Michelemabelle says we are all different but it is good to talk.
Take care.
K.
-
Big hugs too Tempest x :bighug:
-
Thanks again for your replies. It is much better talking with other women who understand. My friends try but they don't really understand & my husband is good but doesn't understand properly either.
Kathleen I wonder if there is a clue in the fact we don't have VA. Does that mean we have enough oestrogen? Just a thought.
Tempest I stopped testogel about 4 months ago as it didn't do much good. The last method of HRT I tried was zumenon 3/4 of tablet dissolved in mouth between gums as this was the only delivery system that I hadn't tried. Before this I had done patches, gels & tablets. I cannot tolerate progesterone of any type, made me crazy. I really hope this new regime works for you. I can really understand your dilemma from having HRT to not having it. X
-
Well week 6 of no HRT & wish I could say I felt good but I don't. The awful symptoms didn't start until week 4 of no HRT & are still awful. Bad anxiety in morning, very irritable off & on throughout the day with down feelings. On a positive note the dizziness & feeling like I am going to pass out is not as frequent as it was. The warm moments aren't as bad. No achey legs & no dry nether regions. So at moment mostly nasty mental symptoms. See how next week goes. I can't wait :(
-
I know how you're feeling Paisley - truly! I've fell at the first hurdle going back on HRT as the flippin' patches absolutely refused to stay stuck despite prepping with alcohol wipes, doing nothing to the skin first, applying whilst lying flat etc. etc......
To say I'm completely fed up with this HRT fiasco is an understatement. So I'm right there in the same boat beside you again, on nothing at all.
We'll prop each other up, shall we? The mental stuff is the worst of all.......anything else I can handle. :'( xxxxx
-
Hi Tempest, I had the same problems with patches they kept coming off no matter what I did. If I had to say 1 HRT that helped a bit I would have to say it was taking it transbuccally (between gum & cheek) Yes having support is so important & message me any time you want if you are feeling bad & we can help each other. Xx
-
I'd like that Paisley, thank you! :)
I spotted your post too over at HS - I hang out there too. Did you get the transbuccal idea from there? It only works with micronised though, doesn't it?
I really feel we oopherectomy ladies are poorly treated and understood here in the UK - our sisters in the States seem to have more options and subsequently do much better!
Hugs. xxxxx
-
Hello, hyster as well in July 2016, have stopped Estrogel in April and had hormonal crash. This was not good for me at all. I also thought I would do better without HRT, I was so wrong... now still living with withdrawal symptoms. I started Estradot .25 in May and gradually going up (I am now at .31). I just can't function without estradiol and need to accept side effects. I am doing some test with Prometrium but I do not change my estradiol level (or very slowly). My menopause symptoms have subsided but I still have light head and ear ringing, coming from HRT, I do not know which one. Maybe its from low E... still don't know, its very complicated.
-
Hello Tempest and all you lovely ladies- hope you start to feel better soon and get into something that makes things better.
Tempest- have PM'd you- not sure if you've got the message? X
-
Tempest yes the tablets have to be dissolvable. I was taking zumenon. I just think if you aren't the norm then the doctors aren't really interested. They don't know what to do if it doesn't involve HRT or ADs. That's my experience. I would like to know why some women can just take HRT & others can't. Is it genetics but there has to be a reason & until we find that answer we will suffer with HRTs. My body thinks it is something alien sort of when you have a cold & you produce antibodies to fight it off. Wish I had been a scientist now.
Julation if HRT helps you even slightly then you should take it. If it helped me even 20% I would take it & if this doesn't work out I might have to
-
It helps but I am not someone who will tolerate big dosage. I think .37 or .5 will be enough for me. I continue to have dizziness, nausea and ear ringing and after 5 weeks, I am 99% sure its coming from hrt. But my heart does not like it when I stop estradiol so I think I will have to suffer side effect. I SO understand what you are going through... I would like to be one of those ladies who can take anything without any problem. Or going through menopause without any symptoms....
-
Paisley, I'm in EXACTLY the same position as you. After about 8 weeks or so, my body can't tolerate it and I've tried a few! It's a pretty violent reaction that I get.
I kidded myself that I could handle it long enough this time, but didn't even get that far as it happens as the patches were hopeless! :-\
The way im seeing this is this. I've spent time over at Ovacome, the site to support ladies with ovarian cancer and there are many there who have 'come through' surgical menopause without HRT because they have to. No one has shriveled up and died, even though God love them the cancer has tried to take them!
Many are leading active lives - one lady who is my age and had the surgery 3 years ago has visited Disneyland Paris and Amsterdam just recently - and this is between chemo maintenance too!
Similarly, there are women over at Hystersisters who came back to offer support 6 and 12 years following their surgeries and no HRT. Their symptoms are now gone. They don't have flushes, have good energy and haven't aged prematurely. I am even in touch with another lady on FB from Hystersisters who had her surgery 8 years ago, no HRT and today she is a lay preacher and spends lots of time on the beach enjoying life with her family.
I've asked her what the secret was -and she said TIME. That and good nutrition, stress reduction and being kind to yourself.
In my real life I also know a lady who is now many years post surgery, took HRT for 5 years but stopped due to severe migraines.
She now works a demanding job, and looks wonderful for her age with lovely skin and a head of beautiful hair. She had her surgery at 39 and is now coming up to 60. So I KNOW for sure that this surgery and no HRT doesn't kill you, but it sure feels like it will at first!
This lady told me it took approximately 18 months after stopping HRT for everything to settle down, but after this she definitely felt better off it! The migraines were stopping her from working and happened even on low doses in the end.
18 months sound like ages, doesn't it? But it does get easier with time. I just wanted to share this in case it's some comfort, as I'm at a crossroads now myself too and weary of trying with HRT now. I've recently spent a lot of money on a private consultant, but pretty much I'm just back to the same things I tried and failed with previously via the NHS. There is no 'magic bullet' for me.
I hope some of this helps, and I'm sending you hugs as I know how tough it is. xxxxx
P.S. Sharing this with you, as this is just one of several similar posts I've seen over at HS. I hope it cheers you!
http://www.hystersisters.com/vb2/showthread.php't=416637
-
This is what I've heard too. That in time, symptoms do dissipate. I used to work with woman who had a complete hysterectomy in her late 30's. Never did HRT. She is 70 now and fit, far more active than me, etc. She is doing fine, traveling and loving life. Most post-meno women I know in my life are not/have not been on HRT and are doing well and have active, full lives. This tells me that time is, indeed, the key. Getting through the worst symptoms to see it to the other side. Taking care of yourself and eating well, etc. To be honest, I never knew that menopause caused such big issues until I started looking online :-\ I never heard any post-meno women in my life talk about it as being a horrible transition. Either they were not speaking about it purposefully, or they passed through to the other side of it and just moved on. I don't know.
Tempest, if you are using generic patches that may explain them not adhering. I used brand-name and gladly paid the extra for it for the adhesion. I used alcohol on the area, applied the patch and never have/had issues with them coming off. Brand can make a huge difference. My prescribing doctor told me that most of his patients prefer to use the brand-name patches for this reason, despite the extra cost.
Good luck ladies and hang in there!
-
Ah, dear Tovahfell! It's so lovely to hear about the lady you worked with. So encouraging, and this mirrors the experience of the lady I know who I mentioned. :)
I also dislike the patches for another reason - I seem to sap the life out of them on the first day, and get a huge surge when first applying them and then......nothing. I know Dancinggirl had this experience too. Same with estrogel, I'd have to bathe in it constantly to keep levels stable! I tried split dosing, even that didn't keep things stable. It was taking over my whole life...... :-\
My Mum who had TAH/BSO aged 42 was on the highest dose of Premarin. She was on this about 4 years, and then developed DVT so came off it. I remember her being a lot more 'mellow' once she was off it mood wise, bless her......but still lots of energy considering she was battling cancer. xxxxx
-
Oops - just spotted your post Michele! Yes, I can see I have a wee message but can't access it via my phone, dammit!
I'll swipe my I pad back from my DS and reply to you just as soon as I can. :)
Hope you're doing ok off the HRT at the moment. It's flippin' humid here at the moment, innit? :o xxxxx
-
Tempest, this is such an underrepresented, or underappreciated concept - that women metabolize and absorb topicals differently! You mention the surge. I do not experience that but I have indeed heard others say this. Also that the patch distribution of hormone isn't even or doesn't last (even though meant for 3-4 day wear). No wonder women have so much back and forth and trial and error. Infuriating! I hope you find something that helps......and if not, you should take heart that there are many women who have had complete hysterectomies your age (and younger) who are doing quite well on the 'other side'.
Good luck to you Paisley and hope you get to a good place with all of this! I would think you'd need to be off the HRT for some time before things settle. Unfortunately, it is to be expected that some symptoms return - it seems to have happened with all of us who stopped HRT at one time or another. And summer is a crap time to have to deal with it. :( But you will get though it! I wish the best for you going forward!
-
No problem Tempest- just when you've got a chance...
Pretty mixed so far. Sweats/ flushes and lots of muscle pain. Mood seemed to be a bit lighter but I've crashed today- might be to do with telephone interview with occupational health nurse today- I was crying by the end of it. No empathy and clearly no understanding of the issues and treatment options. As ignorant as some GPs. I told her I wasn't happy with her but I've been blubbering like a big baby all day. Her time will come...
It's horrible when you feel so vulnerable and fragile and someone comes along who dehumanises you. :'(
-
Tempest thanks so much for your post. It really is heartening & uplifting to read about other ladies who have come out of this the other side. I can't remember if you said or not (sorry brain not with it) if you had ever stopped HRT or not. But you seem like me in that our bodies just don't like HRT. I don't think I metabolize it properly into my system & maybe it is the same with you too. I just find most Drs rubbish & aren't trained sufficiently in this especially for women like us who aren't the norm where HRT is concerned. We shouldn't have to pay to go private. I paid to see DR Studd 7 years ago & that was a waste of money because his regime didn't work & he had nothing else to offer me & his attitude was abrupt. Actually we should get our money back if they can't help us. You are right about TIME being a great healer, even though it is awful waiting. I sometimes find myself wishing my life away. Hugs to you Xx
Tovahfell thank you very much for your kind words. Are you on HRT & how are you doing?
Michelemabelle that nurse sounds awful & obviously has never felt like that or she would have had more empathy. Hope you feel better tomorrow
-
Thanks Paisley - hang on in there! X
-
I am trying to come off Hrt as I dont think its working now I am so fed up with it all after five years.When I first started it was great but thinking back it dident last long I have tried them all tablets first then patch ,gel and now patch again I at the moment am using 75mcg estrodot but a whole patch makes my anxiety go through the roof so I have been cutting a small bit off to see how I feel but last night was one of the worst for years surges and flushes all night long when will it bloody end !!!
-
I feel your pain, Anjia - I really do! This is EXACTLY what happens to me. If i go high enough to get rid of flushes, the anxiety goes through the roof.
So I'd rather live with periods of anxiety due to adrenal surges than anxiety ALL THE TIME.
I don't get why no one gets this. Estrogen is STIMULATING. It HAS to be opposed to some extent by progesterone if you're using a 'decent amount' or else you end up like a rabbit in car headlights! I know some women say 'ooh, I'd LOVE to be on estrogen only all the time'. But they wouldn't be able to hack it long term! xxxxx
-
Paisley, I recently went off for a few weeks but I had my annual GYN exam last week, and my practitioner advised me to not go off at this time because of the extreme heat we've been having. She said waiting until fall would be much wiser and make the transition more manageable. I'm only very low dose - the 0.037 patch which is just slightly higher than the micro 0.025 patch.
I turn 51 soon and have been mostly on HRT for the past 2 years (a few times going off for several weeks here and there). I have always had a love/hate with using HRT. I honestly don't feel that much better on it than off of it. It's the progesterone part that sticks in my craw. I have used it 10 days/month but those are frustrating and physically yucky days. I feel bloated, cravings, lethargic, digestion slows to a crawl, I feel little motivation and get sluggish. I sleep great on progesterone (the one benefit!)
The idea of adding exogenous hormones to my body has never felt like a wise idea to me. The body's hormonal system and its way of regulating it is very sophisticated and fine tuned.
It can be argued that the HRT we use is bioidentical, but our bodies do not produce a steady stream of the same dose, day in and day out. Naturally levels would change day to day, hour to hour. And we have not only estradiol, but estrone and estriol in the mix that our bodies naturally regulate throughout the life cycle. When it starts to becomes like a science experiment in the body, it just feels doesn't feel right to me. That is just my opinion only!
I am fortunate that the flushes I get are manageable and very mild. Maybe they will become worse (as I go deeper into meno), I don't know. I did feel less energy and poorer sleep on the times I've gone off. But I never waited it out long enough to see how that may have corrected itself. My anxiety is not better on or off HRT, but I've only ever used lower doses. Tempest, I have many times heard that estrogen is stimulant. Some women apparently feel great on high doses but many do not.
We all have got to believe there is hope on the other side. :) Even if this process takes longer than we imagined, with good self care, good nutrition, proper exercise and rest, we can prevail. I deeply believe that. It cannot be an accident that we see many active, healthy and vital women in their 60's and beyond around us. Of course everyone has to do whatever it is that makes them feel their best (HRT or no HRT). We each can only do what we feel works for our own bodies and minds! A hug and a squeeze to all! :foryou:
-
Very wise words and hugs and squeezes right back, Tovah! Interestingly, Professor Studd states in his publishing's that anxiety is extremely difficult to address with HRT and for women whom this is a problem, he recommends a referral for talk therapies (not a lot of folk know that - but it's right there in his own words on his website)!
He also states that HRT does nothing to alleviate depression in women who are post menopausal. I think the benefits mentally of HRT are present only during the menopause transition. Depression seems to resolve post menopause as vaomotor symptoms ease and stop according to various research. So it seems that fluctuating hormones are the problem, and for many hormones CONTINUE to fluctuate whilst on HRT.
I also have a paper regarding research in mood following oopherectomy and it states that after following a sample of women for 10 years post surgery, their mood scores were no different from those women who were 10 years post natural menopause. This is backed up by other research which I will post a link to that illustrates that the post menopausal ovary is NOT a major producer of androgens, and that androgen production post menopause comes predominantly from the adrenals (estrogen is produced in small quantities via peripheral conversion - the post menopausal ovary does not continue to produce estrogen).
Here it is:
https://academic.oup.com/jcem/article/86/10/5060/2849419/The-Postmenopausal-Ovary-Is-Not-a-Major-Androgen
Interesting stuff........xxxxx
-
Tempest, than you for posting that link and such interesting information from Prof Studd! I will read the link on my work break. :)
-
Tempest I so agree with what you said about how some women would love to have ostrogen only so they could have more! How I wish it was the case if they new how it makes some of us feel Im sure they would change there minds you have to have a balance but I no for me there isent one.
-
Absolutely, Anjia! I have noticed that the women who do best are the ones who need to take some progesterone due to past endometriosis who have had hysterectomy/oopherectomy - they seem much more settled on their HRT.
Of course, in the States they know to replace all 3 hormones post hysterectomy/oopherectomy for balance - I'm royally fed up that we get fobbed off here as 'it's only for protecting the lining of the womb, you don't need it'.
Have you ever tried Premarin, by the way? It does contain some progesterone and testosterone elements but not a lot. I've met a few women who have done ok on it in our position, but for me on a higher dose it made me pretty dizzy! xxxxx
-
Thankyou Tempest no I have never tried Premarin but is it like Tibelone that made me very dizzy and bloated so would be a afraid to try it ?
-
TovahFell I totall agree with you. I stupidly decided to stop my HRT during the summer. I live in Spain & it is normally 33+ degrees. Before my hysterectomy I could not tolerate any type of progesterone, it made me crazy. I too agree that even though the HRT is bioidentical it still isn't something that our body is making. As soon as we take it it has to be metabolized & that is the part that my body doesn't like. Whereas when we make our own it is done automatically when & if needed. I had PMT, PND & now meno. These are all things which fluctuate hormones & so I think taking the HRT for me causes more fluctuations than I could handle. I hope being on nothing my body can sort itself out internally on its own
Tempest thank you for all that info. I must admit though I am not a fan of Dr Studd but he does produce some good literature. I think maybe oestrogen is only a stimulant if taken externally & for me progesterone taken externally is a real NO. I hated it so much. The only positive for me about having a hysterectomy was not having to take progesterone any more. I am the same with ADs can't take them either. You are both very good in your research & the more we learn about this the more empowered we become because the GPs certainly aren't so we have to help ourselves xxxxx
-
I can't take AD's either! I was able to tolerate Prozac before meno. started (before I had ovaries removed) but after, it sent me loopy! I tried 3 - Prozac (loopy, massive anxiety), Sertraline (inflamed liver) and Citalopram (tachycardia). Some of us are just so sensitive, that maybe only nature and time have the answers.
I hope the heat isn't too brutal for you today! xxxxx
-
Hi all
Up date on NO HRT. Well I have been off HRT (oestrogen only) for nearly 3 months. Would like to say it has been easy but it hasn't it has been awful. Anxiety through the roof, down, more hot flashes, dizziness etc BUT I can say that in the last 2 weeks things have calmed down. The anxiety is not so bad, the down times don't last all day, the dizziness is much better & feeling like I am going to pass out is much better. I definitely can see an improvement. I think I still have a long way to go & after having hormone problems for years I am definitely not getting too confident. We shall see. Just wanted to post in case other ladies are thinking about or are in the same situation.
-
Hi Stellajane
I really hope you continue to do well without HRT. For me HRT was not an option anymore. I tried nearly everyone & none of them helped. I had a hysterectomy in May 2011 & so only had to take oestrogen & I still felt awful on it.
-
Hi all this site really is a life saver. I have tried hrt a few times now latest being divigel only 8 days in and I stopped this morning I'm now convinced hrt is not for me. I felt so bad yesterday I went to bed at lunch time and am still in bed now. The exhaustion became too much. I had hysterectomy 5 years ago and over the years my hormone levels were always low, had a hard time becoming pregnant(was told due to low hormone levels) thankfully I have two beautiful daughters but it was a long road. I honestly think my body is used to low hormones and when I introduce hrt it reacts badly. Well that's my theory anyway. I'm going to forget hrt and ride the storm, hopefully it won't be a long long process
-
Yammy1, I hope you feel better soon. When I used to start or increase any HRT I always felt horrendous for about 3 weeks then it would settle down a bit but I never felt good.
-
thank you Paisley. I phoned doc this morning and thankfully caught her at just the right time she filled out blood test form for me and I have apt in hospital next Thursday morning to have fasting bloods taken. she is checking everything, ferritin, thyroid, iron, magnesium level etc. hopefully this will show what's going on but in the meantime I am definitely staying away from hrt, if I can I would rather live without it, that's just my opinion, I am still tired this morning but at least I can function, even made it to the local shops. will keep you posted, once again thank you for your reply it's nice to know someone is there to share experience with x
-
It is really good also that you are having all those tests done. HRT is not for everyone.
-
Thanks to all for sharing their experiences. I find incredibly intriguing that for some HRT seems almost an utter necessity - that their lives would be a complete misery without it. :( Then on the other end of the spectrum, there are women that cannot tolerate it and actually do better without it.
We all have these same hormones coursing through our bodies, yet we all respond to them completely differently! :o I find this absolutely mind-blowing. I guess I feel fortunate, that I am one who's body must've adjusted very gradually during the perimenopausal process, because all I really get are just a few light flashes here and there. I'm on the 0.025 patch - lowest available - and only indicated for bone density, not symptom relief of any kind. It's a tiny dose.
I believe that each woman's physiology and make up is so unique that what might benefit one woman, could be detrimental to another. The threads and many experiences related on here seem to speak to this. One size absolutely does not fit all!
I'd love to see this thread stay alive (please?) and people continue to report back. Hugs to all!
-
It's true what you say Weathergirl. There's no perfect regime that fits all!
Weirdly my Mum had menopause after her 2nd child, my sister. My sister, had very irregular periods after her 2nd child. Both of them were in their 20's. I had my children aged 37 and 38, and my periods stopped for 8 months, a few months after my 2nd child was born! And I've missed at least 6 months consecutively ever year until my hysterectomy.
My Mum has never taken HRT, my sister only seems to take Vit E to help with flushes, whereas if I had no HRT, I would be in a mental hospital - I don't say that lightly. I did take myself off to the crisis team at my local hospital 2 years ago and asked to be sectioned.
-
Totally agree we all have different experiences during this menopause and it's great to be able to share our stories without judgment or ridicule. Not one person has the answer, what works well for one person is horrendous for another. but by sharing we all benefit and Just knowing your not alone really helps 💕
-
Maybe the doctors should read these posts & then they might have a better understanding of what each woman goes through & the fact that yes we are all different & so they should treat us accordingly. I have never had a GP or specialist who understands. If one size doesn't fit all they they aren't interested. I must add these are only the doctors I have seen. I am sure there must be a few who are different
-
I'm amazed on a daily basis how we all share the same feelings of despair at why there are no clear cut answers to what is going on with us; surely if this is down to a couple of hormones then these extreme symptoms should be able to be controlled or understood. I am at a loss on a smaller scale. Hit by anxiety on a monthly basis (Day 16 & 26ish) for 12 months - bad bout of insomnia - on HRT - felt ok for 6 weeks - suddenly crashed with chronic tireness / panic / headaches / heavy periods - yesterday...stopped taking the HRT on doctors advice.
I have no idea all this time what chemical profile is causing this or what I can take to be ' normal ' again. Reading these posts the best I can be offered if an endless round of 3 month trials of anti-depressants or hormones to see ' what works' which is also competing with any natural cycle that is pre-existing. I find it impossible to say if it was the HRT making me so bad or my existing hormone cycle. Seeing Docs on Friday and know she will say lets just wait and see!
-
Roseneath It's very easy for doctor to say oh let's wait and see and try something else, he/she is not the one exhausted from emotions all over the place. I really am fed up with 'try another dose or type of hrt' and see what happens, NO iv'e had enough . my body and my mind are exhausted with this 'trial and error' doctors keep dishing out. I know a lot of women swear by hrt and for them it's a life saver, but it's not for me so I will just have to find alternatives and weather the storm. hope yu feel better soon x
-
You are right on the button Yammy. I sometimes think it is the swinging of hormones up and down that causes the chemical upheaval. I think the stomach plays a part too as I seem to get intolerance to certain food and have looser stools when I am anxious and at certain times of the month. It is the brain / anxiety bit that needs more research I think - how the hormones cause the anxiety which has such a bad knock on effect on overall mood and brain function.
-
spot on Roseneath, I suffer terrible with my bowels and yes sometimes it's when I eat certain foods, sometimes when i'm anxious and other times for no obvious reason :-\. What I don't get is why this anxiety can start at any time out of the blue, yet I can go days and if i'm lucky weeks without any anxiety. It has to be hormonal but I think the majority of researchers are male so not a lot of interest or time is given to us poor menopausal women :bat:
-
I totally agree. I can feel ok for a couple of days & then bam wake up anxious & down. I never know how I will be from one day to the next. Very unsettling & doctors don't get this & really don't understand or try to. They are fine if you go & the GP gives HRT & it works but for me & lots of women where HRT or ADs don't work they haven't a clue what to do with us. Its like why doesn't the HRT or ADs not work for you. They work for lots of other women. They make me feel a freak for being different
-
Paisley, Roseneath and Yammy I agree. It's unacceptable that the situation seems to be 'dropped' if you don't get on well with ADs or HRT. The hormonal system in our bodies is so complex and I think most doctors are not equipped to adequately treat anyone whose situation is not cookie-cutter textbook.
I think that it's also a really tough time of life for women as children may be moving out and going to college (at least here in the U.S. it puts an enormous financial strain on a family), and our parents (if we're lucky enough to have them still), are aging and often need a lot of help. Add a full/time job on top of it all, and is it any wonder we might wake up some days feeling despair, anxiety, etc? And spouses or partners who don't understand or know how to help.....well, it just gets complicated. Hugs to all you ladies and we have to believe that the worst of this will pass.
Never give up! And know that each day can be better.... :hug:
-
MIS71MUM, I'm so sorry to hear that things got that bad for you. :( I have been at rock bottom before and I know what a desperate and horrible place that is. My heart goes out to anyone that has suffered like this. I hope your current regimen is keeping you feeling far better. Hugs!
-
Woke morning feeling awful. Anxious and tearful. Decided to go out with hubby yesterday evening, all was going well until I had a drink then my heart started pounding really fast, I didn't run away, I stood up to it but it really terrifies me and ruined the night. Noticed lately that if I have a drink be it beer, wine or spirits my heart beats really fast, especially if I eat at the same time. I don't drink that much or often but this is really starting to effect our very rare nights out, just wondering if anyone else has same problem
-
I'm with you on this. For the last couple of years which co-incide with my peri-menopause starting I have not been able to tolerate alcohol as well; especially white wine for me. I don't sleep as well, I am much more irritable, it gets my heart going. I think so many of us have high anxiety around this time that the wine tips us over the edge (caffeine has the same effect on me). Funny though a gin & tonic I am mostly OK! I try to stick to soft drinks and green tea (fennel is nice if you like liquorice) but then don't beat myself up if I've had a bad day and want a glass with a nice meal I've just cooked. (Notice the I...hubby dosn't cook unfortuantely.....)
-
Thanks Roseheath, it's a relief to know i'm not alone, thought I was losing the plot. Just at a time in our lives when children are grown and were a bit more financially secure and able to go out and enjoy a nice meal and a few drinks this blooming health anxiety rears it's lovely head. When will it ever end. On a plus Iv'e just taken my anger out on the house, so floors and everything else is gleaming ;D I'm determined not to let this take over again as it has in the past
-
40 days sans oestrogen for me now. I feel fine. I'd like to feel cooler - not having hot flushes as such just generally too warm. However this has been the case since menopause and HRT didn't entirely resolve it.
As I'm in the UK I actually chose summer to come off HRT this time. Reason being if I do have to throw the duvet off I'm still warm enough to carry on sleeping whereas in winter here you can get into the boiling/freezing thing!
I've no intention of restarting - too old now and fed up with both progesterone and bleeds. HRT was marvellous but enough's enough.
Hi StellaJane
Did you just stop or did you gradually reduce over a number of months? I have to come off hrt for medical reasons - although I have been thinking for a while about doing it but never having the courage - I have been on it for over ten years now. So I'd be interested to know how you did it and am encouraged that so far you are doing well.
Thanks
-
I didn't know you had stopped Stellajane - in fact I was wondering where you were (before I went on hols) as you hadn't posted for a while! Glad you are OK. Interesting what you say about the body being ready to stop HRT - as like you I have tried once to come off (aged 57) and another time to reduce (age 60) and both times flushes returned. When I'm sick of the bleed and the prog maybe I should try again - but for me involves stopping the testosterone as well so would be a long process anyway! Personally I would do it gradually.
Fullmoon - sorry to hear about your medical problems meaning you have to stop HRT and do hope you are able to resolve them and not too serious? Wishing you all the best.
Hurdity x
-
I would like to stop HRT at some point just to see how I am, but I am confused as to how/if I can stop. I had Mirena coil fitted as a result of a post meno light bleed 6 months after starting to use local,oestrogen (estriole 0.01%) for bladder issues., still don't know that what caused the bleed, by gynae said I could end up back having to have another hysteroscopy potentially …
That led to using estrogel to balance effects of Mirena, and a have estring too, more recently external soreness and irritation has led to using estriole again externally.
I suffered bad anxiety and hot flushes prior to HRT, and had been feeling mostly much better and calmer, more on a level, but yesterday I had an awful day, completely lost it over trivial thing at home, and spent the day wanting to disappear and shut myself away from the world.
Now questioning if the extra little bit of estriole applied daily to my vagina is increasing my oestrogen levels and making me anxy, or if it's just a hiccup.
Sometimes I just want out, but not sure how I can do that with Mirena and VA
-
Yes I haven't been around much lately. I think its part of my general wind down from involvement in all things meno-related. It seems to have been a long journey!
The last cycle of progesterone I just knew would be my last. A lot has changed this last year. We are both retired now and like to go off doing things on the spur of the moment. I don't want to be worrying about possible progesterone side effects or bleeds any longer. I'm happy that I gave myself a good long period of extra bone protection which was always one of my main concerns.
As I said, everyone has their own 'right time'. The worst thing for me would have been to have someone tell me to stop before I was ready, though I realise other health concerns can sometimes necessitate it.
I can understand wanting to wind down from thinking about menopause - there is so much of our life (if we're lucky) that is post-menopause! Do enjoy your retirement and all the things you plan and all the spur of the moment stuff - I agree that thinking about bleeds and utrogestan etc is a right pain and I am governed by it to some extent.
Do drop in from time to time and let us know how you get on sans HRT as we'd love to hear - especially those of us in our 60's.
You have provided such a lot of useful advice and information on menopause and HRT to other women over the last few years and telling about your experience is so helpful!
All the best :)
Hurdity x
-
I have to come off HRT medical reasons I use an Estrodot patch should I just stop or do it gradual I dont use progesterone glad for some help I have been on hrt for five years .
-
Thanks StellaJane and thanks Hurdity. My reason for having to come off HRT is because I've recently been diagnosed with breast cancer - caught early and very small lump - but cancer all the same and surgery now booked for the end of the month.
I took advice from a specialist who admitted that very few studies had been done on this - but those that had looked at withdrawal regime of between 6 weeks and 6 months. Fortunately no-one is suggesting I go 'cold turkey' so we have agreed a 3-month regime where i reduce my oestrogel from 2 squirts a day to 1.5 for a month, then 1 for a month, then half for a month and then stop. I take utrogestan alternative nights vaginally so it was suggested I carried on doing this until I stop the oestrogel.
I am ten days in now and today feel awful but that may simply be because I had a fairly stressful day at my pre-op appointment at the hospital and didn't sleep well last night (I was very hot but don't immediately want to assume that it is because of hormones...) In fact I feel fairly positive about coming off as I have had other issues this year and it is good to try - but I wish it had been under different circumstances.
-
Oh Fullmoon I am so sorry to hear this news. Will you have a lumpectomy or are you advised to have a mastectomy? There are one or two other members who have had similar operations recently - a thread maybe in the Other Health Discussion section so you might like to have a look - or else perhaps not?
You are bound to feel a bit rough - both because of the stress of your diagnosis and treatment to come as well as your hormones, so look after yourself and I hope the withdrawal from HRT is not too difficult.
There are plenty of women on here who can help support you if this is would be helpful but some find it better to withdraw and cope using support within their immediate circle.
Do take care and wishing you all the best with your forthcoming operation.
Hurdity x :bighug:
-
Thanks Hurdity. It's lumpectomy for now. It's a journey like all the others with its own ups and downs I am sure. I am in withdrawal mode while I get my head round this but I am sure I will come back and join the other discussions in due course.
:)
-
Fullmoon, I'm so, so sorry to hear this. wishing you all the best.
I stopped the estrogel and utrogestan last week for blood tests today. I am so much clearer and less groggy. I'm having some night sweats and feel tired, so probably need something, but I'm thinking of maybe trying something else. Perhaps femoston. That combo wasn't right for me. It was no where near as bad to stop as I expected. In fact I actually feel more normal. I think if the hrt combo is right for you, it may be more difficult to stop than if it is not.
-
Fullmoon
So sorry to hear your news
I have been off oestrogen for over 3 months & you are definitely doing it right by slowing tapering & I think you will have a smoother journey. I stopped cold turkey as oestrogen wasn't working for me no matter what type I tried. I am having a rough ride but it is my own fault for doing it suddenly. Good luck with everything
-
Hi All
Its been a year since I last posted. I was diagnosed with breast cancer in August 2017 and have gone through treatment (lumpectomy and radiotherapy) and am happily out the other side now. I was fortunate in that it was caught very early, there had been no spread to my lymph glands and as it was Her2 negative I didn't need chemotherapy. I tried both Tamoxifen and another aromatase inhibitor (forgotten name) but stopped both because of the side effects - stopped with the blessing of my oncologist because the reduction in risk of recurrance was not only 1 or 2% different from not taking it at all - I decided that quality of life had to be dominant rather than taking a pill daily which made me ill simply out of fear of recurrance.
When I got my diagnosis I was as frightened of coming off the HRT as I was of the cancer itself - that might sound strange but I have had a pretty awful menopause experience and there was a lot of fear for me in going back to where I had come from. However - and this is why I am sharing this now - my experience really was not bad at all. I took advice and took three months to wean myself off both the oestrogel and the utrogestan. The only issue for me now is hot flushes - which ironically I never had first time around. I get about a dozen a day. At first they really bothered me but now I think I have woven them into the fabric of my existence. I carry a fan around with me and have a fan on my work desk. I don't hide the fact from people around me and while sometimes the flushes are very intense leading to sweating - other times they are not - there is no pattern nor any obvious triggers (sometimes coffee will trigger a hot flush, sometimes not; any hot drink can trigger one for me in fact - but not always).
It was helpful for me to talk to a counsellor about my fears and move on from what had been a very dark part of my life.
I have found that not taking progesterone daily has really improved my mood overall (with the usual ups and downs) and I also think (night swaets notwithstanding) than my sleep has improved - which was the last thing I expected.
So, over a year on, I am glad that I am now off HRT and fully in my post menopausal self. I'm 61 now and my menopause journey started in my mid-forties. I don't regret taking HRT for a moment. I don't know if my breast cancer was a result - but it doesn't matter to me. HRT was a life saver for me (literally).There are so many risk factors for breast cancer - HRT is relatively low among them - that I would counsel any woman struggling with perimenopause or menopause to explore HRT. No-one I encountered in my treatment ever suggested to me that there was a causal relationship between me taking HRT and my breast cancer.
What's been really interesting in these past 12 months is to discover that menopause is now 'out there'. When I started this journey this forum was about the only place I could find with like minded people. It was such a relief to know I was not alone. It is really good to see menopause being talked about more openly now. I am sure this will help a lot of women. There is still a long way to go for women to receive proper medical support - but women are finding the collective voice to push for this. We're even starting a menopause network at work now!
I wish everyone on here all great strength. Thank you for all your support over the years. It has meant a huge amount to me to be part of a huge sisterhood of support.
All the best for 2019.