Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Alicess on September 18, 2019, 05:32:16 PM
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I desperately need some advice as I feel I can't go on much longer. Every time I try bioidentical hormones my symptoms are getting much worse. I've
tried patches and estrogel and every time my hot flushes, sweating and all other symptoms went through the roof. My French physician back then told me to increase to 4 x100 mg and then 8 pumps of Estrogel but it didn't matter. Low or high dosages gave the same result. Last time on Estrogel I became very hot and sweating after only one hour after application. My skin started to feel extremely dry and burning. After stopping my hormone levels didn't return to before I started but remained low What frightens me the most is that it's aging me dramatically. Besides the sagging I have lost most of my subcutaneous fat ( and my theeth) I look like a zombie now. My face is constantly red and flushed and even my pores have sagged dramatically. My hands look so old. Sweat is dripping of my face.On some days in the cycle I have trouble speaking like my muscles around my mouth are not working properly and my upper lip is hanging on my lower lip. Other days my face is cramping. Walking is difficult, muscles don't seem to work as well in my legs either. And then the anxiety, depressed feeling, brainfog, confusion and a feeling of derealization.insomnia etc, etc...
I've also tried Premarin ( didn't know it was horse urine back then) and Livial but to no avail. The only day I felt some relief with any treatment was around ovulation time.
I am 53 and I stil have a cycle with the same symptoms getting more or less on the same days. I'm afraid it has something to do with being on birth control from the age of 14 till I was 48 when I was put on bioidenticals. It put me straight into the ER as my leg started swelling and it put me straight into menopause. In less then three weeks my breasts sagged and my ears started ringing. Then I lost 1 cm of hair along my frontal hairline and
half of my remaining hair on my head. I need estrogen as I am my wit's end. I am responsible for my dad who has Alzheimer's so there isn't much choice then to keep going on but I am barely functioning anymore. I have to do something as the birth control I am on doesn't help at all anymore.
The last specialist I went to ( a professor at the university no less) asked me if I have ever tried a estrogen dominance diet and suggested a depro-vera injection ( without any estrogen alongside)
Could it be that I have to stay on the bioidenticals even if it gets so much worse? And I need more time then usual before I find some relief Could. it be remotely possible that there is any truth in estrogen sensitizing progesterone receptors first before estrogen receptors? And that's what's going on? As you can tell I'm grasping at straws...
I'm sorry if I'm rambling, I'm so tired I can't even put on a straight face or pretend.
I would really, really hear your experiences.
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Alicess - wow, you're really being put through the ringer!
I can't help much but it does sound like you're not absorbing the transdermals properly. Have you tried (other than Livial and Premarin) tablet Oestradiol? Livial is a very low dose anyway, although not Oestradiol, maybe the dose was just too low? It sounds like your body has literally been plunged from high synthetic oestrogen to virtually nothing. The synthetic EE is thought to be between 3-5 times more potent so even on a high absorbed dose of bio oestrogen, it'd be nowhere near what you were used to.
Dangermouse seems to have good knowledge on progesterone receptors, hopefully she'll see this and can help with that part of your query.
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Hi Alicess, I've had to come off bioidentical HRT (Estrogel & Utrogestan) as it made me feel so ill. Palpitations, stomach upset, bloating which led to GERD. I was still getting hot flushes, dryness down below, fat deposits on my thigh, a achey feet/legs and hairloss. Not good for me at all, I've been off it since Saturday and I feel like a new person, my head is clearer, bloating is going and palpitations dissipating. I've not had any hot flushes during the day, just one at night. I have also lost 3lb in weight since coming off it.
I would never advise anyone to leave off HRT but when the negatives out weigh the positives maybe it's time to make a change. Take care. X
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Hi KiltedCupid, thank you for your response. Yes, I have tried oral tablets but I grew a beard! I think you are right that synthetic estrogen is much more potent and that's why I plunged so deep. I don't understand why the synthetic estrogen isn't working anymore..
Hi TraceyE, yes, I have read your story and I can relate. Unfortunately, If I stop it gets even worse. It seems that I don't have much hormones of my own anymore as it's been surpressed for so long. Strange how hormones can make everything worse as it's suppose to add to our own hormones.
I wish you well x
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Alicess - have you seen an endocrinologist? Your symptoms seem so drastic it might be worth asking for a referral.
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Yes, I have seen an endocrinologist but everything is fine. The couldn't find anything that would explain my symptoms. It's the extreme reaction that frightens me. I sometimes wonder if my body doesn't recognize bioidentical estrogen anymore as its been surpressed for to long. Or displaces them. Hence my question about progesterone receptors. I did have an urine estrogen metabolic test en there was a surplus of estrogen in my urine. As if my body is flushing everything out.
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If you're still in perimenopause and oestrogen is making you feel worse then I would stop it and let it all settle. You could be having migraine type symptoms (it's often not about pain but odd neurological issues) caused by too much oestrogen that your naturally producing. If you get symptoms that feel like over stimulation then it's likely high or surging oestrogen that's the cause.
Too much progesterone would be more drowsy, depressed feelings.
There is a theory that receptors can naturally be put in a desensitised state when a hormone is too dominant, and then adding in the rebalancing one can cause an immediate reawakening and worsening of symptoms until they fully rebalance. This doesn't sound like your symptoms though.
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Hi Dangerous, I do feel drowsy and tired depending on the time in my cycle. I feel it is lack of estrogen hence the sagging and aging so quickly.
I wonder if it could be that some women feel worse at first on estrogen because it's reawakening the estrogen receptors. According to a book I've read the estrogen peak around ovulation sentisizes progesterone receptors on cells all over the body getting them ready to accept progesterone (receptor anticipation).
I can't explain the worsening of symptoms as HRT suppose to add to are own hormones. I did stop HRT but my symptoms are worse then before I started. So something has changed.
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Alice. I wish I could offer some advice but I am in a similar position to you. I am so sorry. I sympathise whole heartedly.
I could've written most of the things,you have said
I was put into surgical meno a year ago at 53.
Before my op. I had no symptoms of peri. . It was thought that at my age ovary removal should not have the pronounced affect it would in a younger woman. But it did. . Immediate and very severe and pronounced symptoms, the whole lot on the list and more. So why such a huge crash.? . It was mentioned to me by meno nurse that the ovarian cyst I had mightve been delaying menopause as some can produce hormones or interferes with ovarian function. So the drop was from a greater height. I mention this as I'm wondering whether you being on the pill may have "masked" menopause which is why you feel you went into it overnight coming off the pill. So like me. You fell suddenly from a great height.
When this happens in younger Iwomen it is widely accepted it leads to more widespread and severe symptoms which need higher doses of replacement to combat than are needed in peri
So maybe this imakes replacement more difficult. I was allowed to crash and then given a 50 patch. I should have been started higher. .but I have got worse and worse on HRT. I'm now on 200 patch and tried eastrogel but I don't absorb. Plus , I have a very strong horrid reaction to oral progesterone.
I can only describe how I feel as realy ill. and the changes to my appearance over the last year have been many and drastic. So i realy understand how you feel. . It is overwhelming.
Blood tests show my eastrogen is low. And hasnt gone up on high dose HRT. I feel as though I'm getting absolutely nothing from the patches. I have lots of symptoms of low eastrogen and it sounds to me as though you do too.
But is it as simple as "non absorption". ?
It's an interesting question you raise about whether some of our bodies dont know how to process exogenous hormones. However identical they may be. It certainly feels as though my body either doesnt know what to do with the hormones I'm putting in or is rejecting them
maybe as you say receptors come into play. But what can we do about that?
Sorry it's long and I'm speculating so much but your post realy resonated with me. I too am desperate for answers. I hope you get some. I will watch with interest.
Best wishes Alice. Xx
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TC, I really feel for you and I think you're right, we are in the same predicament. I don't mind at all if you speculate, please do! And I don't mind a long story either as it gives me insight in what you're going through and I think it will help us both not feeling so alone.
Contrary to you I immediately feel worse when I try bioidentical hormones. I did stop taking the pill before all this happened but it didn't make me feel this bad. I believe it has lowered my own estrogen level instead of increasing it. I sometimes feel that my body is seeing the exogenous estrogen from HRT as it's own and act accordingly if you know what I mean. It should add to my own hormones but it seems it's replacing them. I find that very scary.
Yes, I firmly believe very low estrogen is causing our symptoms.. And progesterone, especially Urtrogestan, isn't making it any better in your case.
I'm losing hope. If always thought I could find a solution but nothing has worked, it only made it worse. I'm contemplating trying Patches and applying Estrogel on the vulva as someone had great results with that route. But what if everything gets worse again? Then, for me, there's no return.
Lke you I'm wondering if it's just non-absorption. Something else must be going on or you would feel some change, wouldn't you? If I remember correctly you're SHBG is also very high? But even if it's high there should be something left for your body to use. Oral bioidentical tablets are also bound by SHBG and bioavailability is low, I believe, because of first pass through the liver. Maybe you could discuss low dose ethinylestradiol tablets with a progestin tablet as a possibility at your app.? Ethinylestradiol is more potent and isn't bound by SHBG. Birthcontrol pills are usually to high and also the progestin in it is very high. Don't lose hope yet, there are still options.
Alicess 🌷
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Thank you Alice I will look into the ethinylestradiol. Yes my shbg has gone up.
About it seeming like the HRT is replacing your own hormones, do you mean sort of over riding them and just cancelling them out. ? I know the pill is strong enough to do that but I dont believe HRT is strong enough to override a natural cycle. I've often seen women on heer say it's the other way round. The natural cycle sometimes overrides the HRT in peri.
What were your last bloods? Have you had Testosterone tested?
I've never not been on hrt since 6 or 8 weeks after surgery so I dont actually know if Ifeel worse on it than I would without it. Certainly I would feel better without progesterone. Hmm that's set me thinking but that's another post.
I'm a bit concerned about the idea of using eastrogel on the vulva. I've never heard of this.
Do you know more about it?
I know what it's like to feel so desperate for something...anything to work.
Tracey. May I ask you a question please.
You said when you came of HRT dryness improved. ? Do you think the progesterone made the dryness worse?
Hope you dont mind me butting I with a question Alice.
Xxx
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Tracey. May I ask you a question please.
You said when you came of HRT dryness improved. ? Do you think the progesterone made the dryness worse?
Hope you dont mind me butting I with a question Alice.
Hi TC, If I analise it I would say I was equally as dry on the Estrogel. Neither the Estrogel or Utrogestan improved that unfortunately. In fact I'm probably more moist since I came off both. I believe dryness is a side effect of the Estrogel. :(
TC how are you feeling today? X
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No, I don't mean that HRT is overriding my own hormones, as you've mentioned that's what the pill does. It feels like they are cancelled out. Otherwise I can't explain why my estrogen levels are lower and symptoms worse after I stopped HRT? Or it could be related to FSH not being surpressed anymore?
It's so complicated!
I don't know when your overaries are removed how it effects your FSH? Should it be high or low?
My testosterone is very low, my SHBG very high > 200 so no free testosterone. I have tried testosterone but, again, made everything worse.
You've tried testosterone as I remember? Did you feel any benefits?
Did you ever try a progestin instead of Urtrogestan? Progestins can sometimes be a better choice as some of them have some androgenic activity while Urtrogestan does not.
I am rather desperate so willing to try anything, even Estrogel on the vulva.
https://www.menopausematters.co.uk/forum/index.php/topic,45128.0.html
Don't mind you butting in X
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Hi Alicess,
Reading your post, being in late peri with very irregular periods myself for about 2 years, about issues with walking etc I recognised symptoms I started getting when starting HRT myself a few weeks ago. Initially, I tried patches and Utrogestan, then Femoston 1/10 but have for now stopped with HRT since it made me feel much worse in many aspects. HRT helped with a bad patch of hot flushes and mood for me but I started getting lots of other things that worried me like the coordination completely gone, and similar stuff you described. My thyroid function is also borderline underfunctioning and I am going to see a specialist next week. If I get any advice what could be the cause of the coordination etc issues I will report back on this. I hope you find something that helps you will all these symptoms so that things improve. AG
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Hi Dangerous, I do feel drowsy and tired depending on the time in my cycle. I feel it is lack of estrogen hence the sagging and aging so quickly.
I wonder if it could be that some women feel worse at first on estrogen because it's reawakening the estrogen receptors. According to a book I've read the estrogen peak around ovulation sentisizes progesterone receptors on cells all over the body getting them ready to accept progesterone (receptor anticipation).
I can't explain the worsening of symptoms as HRT suppose to add to are own hormones. I did stop HRT but my symptoms are worse then before I started. So something has changed.
Alicess - my understanding is that oestrogen receptors are there all the time and are activated in the presence of oestrogen. However progesterone receptors (perhaps just in certain parts of the body?) are activated in the presence of oestrogen. Possibly just in the uterus - sorry a bit hazy on this. It would stand to reason re pregnancy though. The whole matter of hormone receptors is so extremely complex and involves very high level understanding of cell/molecular biology and biochemistry. The more I read the less I understand.
Sorry to hear you are feeling rough. Have you had hysterectomy and BSO? Also could it be tachyphylaxis rather than non-absoprtion - or have you had your oestrogen levels measured and confrmed as low. Sorry I've forgotten your story. I'm a bit confused as to where you are in menopause re natural periods if you haven't had hysterectomy?
Hurdity x
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TC, I really feel for you and I think you're right, we are in the same predicament. I don't mind at all if you speculate, please do! And I don't mind a long story either as it gives me insight in what you're going through and I think it will help us both not feeling so alone.
Contrary to you I immediately feel worse when I try bioidentical hormones. I did stop taking the pill before all this happened but it didn't make me feel this bad. I believe it has lowered my own estrogen level instead of increasing it. I sometimes feel that my body is seeing the exogenous estrogen from HRT as it's own and act accordingly if you know what I mean. It should add to my own hormones but it seems it's replacing them. I find that very scary.
Yes, I firmly believe very low estrogen is causing our symptoms.. And progesterone, especially Urtrogestan, isn't making it any better in your case.
I'm losing hope. If always thought I could find a solution but nothing has worked, it only made it worse. I'm contemplating trying Patches and applying Estrogel on the vulva as someone had great results with that route. But what if everything gets worse again? Then, for me, there's no return.
Lke you I'm wondering if it's just non-absorption. Something else must be going on or you would feel some change, wouldn't you? If I remember correctly you're SHBG is also very high? But even if it's high there should be something left for your body to use. Oral bioidentical tablets are also bound by SHBG and bioavailability is low, I believe, because of first pass through the liver. Maybe you could discuss low dose ethinylestradiol tablets with a progestin tablet as a possibility at your app.? Ethinylestradiol is more potent and isn't bound by SHBG. Birthcontrol pills are usually to high and also the progestin in it is very high. Don't lose hope yet, there are still options.
Alicess 🌷
Alicess - I've heard of ladies in meno taking half a low dose CCP with great results. I agree, I never had problems on the pill but have had a nightmare with bioidenticals, particularly transdermals.
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Thank you Tracey. The last few days I've felt awful. sick on the utro I cant eat I've been on progynova 2 weeks. I didnt think it would be anyy different to estradot as I didnt think I was getting much from it anyway but I've had a lightbulb moment !! I've been "screaming for eastrogen". "I even thought of adding eastrogel.!!! . Anxiety has got steadily worse. Hot flushes today and my skin is so dry. Eyes mouth even nose . Its worse than ever. So it's back to estradot. I've only got a few left though. Thank you for asking after me. How are you?
Alice I havent felt any benefit from testogel. But then I guess I wouldnt with low E. How did it make you feel?
When ovaries removed or once you are 12 months post meno FSH goes up and stays up.
I havent had anything other than utrogestan. Except on femseven which i think is levenogestrel.
Xxxx
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AG, thank you, I hope the specialist can give you some answers and I would really like to hear them too. Good luck!
Hurdity, I still have my womb and ovaries, I don't know if I'm in peri or menopause because I'm still on BCP'. If I stop taking them then cluster headache starts again. My symptoms where the same when I was on low dose patches and Estrogel so I don't think it's tachyphylaxis. To do a blood test means I have to stop birth control for three months. That's just not an option. I did do a blood test for testosterone though and my SHBG was very high and testosterone very low. It just dawned on me I took Pueriara ( strong phytoestrogen) and having the same response as on estrogel and patches. How can that be? Does my body not recognise bioidentical estrogen anymore? Because I"ve been on birth control for so long? If it's non-absorption then I should feel a little different on a higher dose? I only felt a little difference around ovulation. And only for one day.
KitidCupid, yes,, BCP's are stronger so it's overriding our cycle. I wish it would work for me still but after taking bioidenticals the pill just doesn't work anymore. I believe for some it"s a better solution. Some relief to know I'm not the only one with a negative experience.
TC, on testosterone I felt much the same as on estrogen. My hairloss was a little less and I sometimes felt a strange libido. Like only my body responded but no desire in my thoughts. But it made me feel as bad.
Alicess X
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Alicess - I had no idea you were on BCP and didn't know where you were in menopause. Is it the CCP or the POP? Whichever it is no wonder you are feeling weird but especially if it is the CCP! This is so non standard and who knows what's going on with your body with all that stuff floating around! This would not be prescribed in UK at all as far as I know - huge amounts of oestrogen on top of the oestrogen in CCP ( if that's what it is?).
If you're on CCP and some types of POP then you won't be ovulating anyway.
I don't think we can possibly advise you as this is all so unusual there is no experience to compare it with really. Sorry.
In your position having tried all this I would seriously stop everything for a while (several months) and see what's happening to your natural periods - I can't remember how old you are? It might be tough but you will have some idea and then the right treatment should follow depending on your cycle and symptoms. I would treat any symptoms (eg headaches) you get with other meds until you know what your natural cycle is doing. In UK there is a CCP that can be prescribed for peri-menopausal women who also need birth control called QLAIRA which has the bio-identical estradiol and controls your cycle. Not sure if this is available in ?Holland ( I think thats where you are - apols if wrong?!).
You could however have an e-mail consultation with Dr Currie maybe - costs £30 but I think you pay through your phone or Paypal so you should be able to access it - you could tell her your story briefly and what treatment you are having and you get to ask one question.
Really sorry but what you are doing is beyond my understanding and can't possibly fathom a guess what's going on in your body.
I really hope you manage to sort something out soon so that you feel better.
Hurdity x
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Hi all...hurdity can i just ask what is CCP and POP? X
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Alphabet soup used in this topic....
POP = Progestogen Only Pill
BCP = Birth Control Pill
SHBG = Sex Hormone Binding Globulin
FSH = Follicle-stimulating hormone
EE = Ethinylestradiol
BSO = Bilateral Salpingo-Oophorectomy
and
CCP= Combined Contraceptive Pill, but it is usually COC - Combined Oral Contraceptive (thanks, dahliagirl)
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I am thinking CCP= combined contraceptive pill, but it is usually COC - combined oral contraceptive
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Haha yes dahliagirl- that's what I always use (CCP) as distinct from POP. Strictly speaking it was originally COCP. Don't know where I got CCP from - here I expect!
Thanks Emma...
There is also GERD, and ER....
I realise that abbreviations can be annoying to some people but so can typing out things like "Sex Hormone Binding Globulin" every time - well just time-consuming when you're trying to reply to posts!! Maybe we could have an abbreviations section in forum guide or something to refer members to? Or maybe do one ourselves and get it pinned? Would this be good Emma?
Also - if in the dark then remember.... Google is your friend!
Hurdity x
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Gosh....all so much eh! But thanks for explaining girls x
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I'll see if they can be added to our A-Z
https://www.menopausematters.co.uk/atoz.php
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Alicess,
I will let you know (via this thread) if specialist could help with the coordination etc issues when starting HRT. One thing that I am currently trying out is a low dose of B vitamins, and that seems to help but I will mention all of this to specialist. AG
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Hurdity, I should have explained my situation more thorough. When I was on HRT I didn't use birth control pills (or CCP). I went off them. I did experience cluster headache but I stayed on HRT hoping it would get better which it didn't. The pain cluster headache gives is extreme and the painkillers I take can only give a little relief, even morfine doesn't help. So I can not endure it for months on end. I don't know why birth control pills stop the CH, my quess it's the androgenic properties.of progestins. Whenever I stopped birthcontrol I bleed heavenly and it won't stop. I'm 53 now, when I started HRT I was 48. I also tried Claira to no avail and I've tried Zoely, oral estradiol and normegestrol, it gave me a beard and made me suicidal.
It is not uncommon in Holland though to give HRT together with BCP's as for some women BCP''S it just don't work as they should. For some women who experienced severe PMS or PMDD it has made a huge difference. BCP's don't always surpress a cycle or give enough estrogen. Some women even get pregnant on them.
It doesn't surpress my cycle and I do still feel the ups and downs on the same days of each month. I don't know if I'm still ovulating but the days around ovulation I feel a little better and it's always on the same days of my 30- day cycle. My symptoms started when I used HRT for the first time and after that BCP didn't surpress my cycle anymore as it did before or gave any relief of symptoms. Some other women who were on birth control and started HRT also felt much worse as KiltedCupid mentioned. I don't know if HRT just isn't strong enough or because ethinylestradiol isn't bound by SHBG and bioidentical estradiol is? Furthermore, BCP increase SHBG so maybe that's something to consider too? Surpressing FSH could also be important? Despite reading and researching so much I still don't have a clue.
I understand you can't give me a solution as it is complicated.
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Alicess
I was told by my GP that hrt is stronger then the pill. ? Is this right
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Sammiejane, to my knowledge the pill is much stronger than HRT so the opposite of what your GP has told you.
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Alicess
Well that is what I thought and recently I had follow up with gynocologist and when I mentioned to him about going on the pill he said I don't see why not it same as hrt both give u hormones and in my case having ovaries removed surely would be better if it's stronger ?
I've been told that because I smoke and over 35 I'm at higher risk of blot clots and dvt but then hrt you have this risk to as well as breast cancer !
I'm just in such a whirlwind with it all and currently am taking estradot patch 75 which I have headache every day and feel tired but other then that ok I guess but I feel like something is missing.
Also he couldn't understand why I hadn't been given testosterone already. !
As I'm not able to find a balance or the wonderful estrogel didn't obsorb my menopause are now suggesting well hrt just must not suit me and to stop it and this is the same predicament I was in 5 yrs ago when I had my op that because one hrt didn't suit me which was elleste solo mx40 transdermal patch my GP just said well hrt dosent suit you so stop it and just go through menopause I wad 35 which I think I's disgusting care personally I'm no 40 and went cold turkey for over 4 yrs and have now an autoimmune disease and osteopenia!
So I'm just going through them all and if estrogen not enough then will add progesterone and if that don't work will try the pill and if that don't work then I will stop everything I was greatful I had no menopause symtoms following my op and only started HRT because I was becoming emotional and had vaginal dampness which they believe was VA so take Ovestin . I now suffer hairloss and mood so up and down since starting hrt I don't sleep so exhausted and tired mentally and to top it off had to give up work , I've gained weight after loosing over a stone so feel really shit but I'm worried if I stop it now then will things be worse will my hair fall out more will VA be worse although I don't think low estrogen is the cause of my hairloss as it would of happened following my op and gradually got worse as my levels lowered but Infact as I didn't obsorb estrogel well and my estrogen levels went lower my hair wasn't shedding as much ! I think an imbalance is my problem or the spike in estrogen levels . All my blood test are fine and thyroid fine . I'm sorry u are going through what you are and I sympathize cause I'm having myself a tough time
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Hi Sammiejane, I'm sorry to hear you had such a difficult time Like many women you where not treated properly! But I'm glad to hear you are feeling better on the HRT you are using now,, give it some time as you do feel a difference compared to Estrogel.
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Thank you Tracey. The last few days I've felt awful. sick on the utro I cant eat I've been on progynova 2 weeks. I didnt think it would be anyy different to estradot as I didnt think I was getting much from it anyway but I've had a lightbulb moment !! I've been "screaming for eastrogen". "I even thought of adding eastrogel.!!! . Anxiety has got steadily worse. Hot flushes today and my skin is so dry. Eyes mouth even nose . Its worse than ever. So it's back to estradot. I've only got a few left though. Thank you for asking after me. How are you?
Alice I havent felt any benefit from testogel. But then I guess I wouldnt with low E. How did it make you feel?
When ovaries removed or once you are 12 months post meno FSH goes up and stays up.
I havent had anything other than utrogestan. Except on femseven which i think is levenogestrel.
Xxxx
Hi TC, a week off HRT and I feel fab, no hot flushes yet which is a bonus. :) X
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Hi KiltedCupid, I seem to have misread your post. You've also had a bad experience with bioidenticals after birth control, I missed that part. Where you able to sort it out? Did you went back to birth control and did it work?. I do hope you have managed to get some relief of symptoms.
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Great news Tracey xxx