Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Night_Owl]

Is anybody else battling to stay off HRT ...

Trialling 3+ months off due to worsening progesterone intolerance and migraines.

c.12 years post meno and never found a HRT regimen that suits, tried a whole range over the years from NHS Meno Clinic - low to high dose, all types of progesterone etc etc - every which way.

Simply cannot tolerate any progestrone - eg. Utrogestan, v-route - even when inserted high with an applicator, the effect is systemic, creates depression/anger etc, irritates the bladder, withdrawal is hideous in terms of mood/migraine etc etc.  I absolutely can't take it Conti or alternate nights and loathe having a withdrawal.

Can't help thinking how unnatural it is to force/create a cycle once you're well post meno - who wants to be dealing with a withdrawal bleed in their 60s, 70s, 80s? [shudder]

The Meno Clinic have said that yes, prog intolerance can worsen further with age. 

I can't afford the Marion Gluck bio-identical route.  Mirena is a no-no.  Hyster is too drastic and could create other issues.  Can't tolerate any ADs.  None of the herbals/alternatives work for me.  I do all the other usual stuff, diet, vits etc etc.

For some women, maybe there just is no HRT that is viable - it hasn't been discovered yet.

So no options remain, I'm thinking?

GP has suggested CBT.

Cannot believe that my symptoms have returned *as bad* as they were when my periods stopped and my levels dropped through the floor - all those years ago. 

Good grief, is there no natural balance/adjustment of the body in it's so-called "wisdom".  Of course estrogen deficiency is forever but surely the body/adrenals compensate somehow, the majority of women don't take HRT and survive.

I'm just gritting my teeth and hoping that my body knows best and will respond/adjust, given more time.

How are you coping .... ? 

[CLKD]

 

Menopause may be 'natural' but the effects can be devastating.

How have the migraines been since you stopped?  Hysterectomy can product problems and is a major operation.  Are you using plant based food stuffs because that on it's own may cause symptoms because some have oestrogens in. 

[Ladybt28]

Hey Night_owl
Rather than go what I call the medical route - which I sort of describe in my head as being the meno experts/NHS prescriptions
Have you tried what I call the "alternative route" - something like Menopace (which is one fo the most well known).  There are others - check the internet - or go to H&B and have a look at the natural botanical range they do.

Maybe something like that is the way to go for you - they may at least bring an element of control rather than be so strong they tip you into loads of side effects.

[Night_Owl]

Thanks for posts / suggestions, much appreciated.

Over the years when I've tried to stop previously I've tried a whole spectrum of alternatives - potions made by an expensive herbalist, various adaptogenic herbs, Rhodiola, Ashwagandha, Holy Basil, the usual Red Clover, Black Cohosh etc etc and loads of other 'remedies', masses of vits.  Unfortunately, I didn't get along with Menopace as soya doesn't agree with me at all, can give vertigo migraine so I don't use any soya products.

Here's the thing.  Since I've stopped the migraines have *lessened* and decreased in duration, a bit better.  Which to me suggests that the fluctuations created by the sequi HRT make them worse.  The agony of a hideous 4 day migraine when I was on the *estrogen only* section of my HRT drove me to rip off the last patch in total meltdown despair.

The Meno Clinic do suggest coming off every so often to see where you are and how the body responds.

My body is screaming out for hormones but doesn't like the so called 'body identical' estrogen patch and Utrogestan.

The symptoms which are getting me down the most are the drenching night sweats/shivers/adrenal/cortisol surges/insomnia, sleep deprivation, night heat that goes on for hours after a sweat, noctural incessant anxiety/worry/fear about everything and the future - sleep deprivation driving me to insanity, eg. can't string a sentence together and can't remember words, don't feel safe to drive but I have to, throwing washing in the rubbish bin instead of the machine next to it and then finding it later - loads of mad stuff.

The day flushes are bad but somehow I can sort of cope with deep abdominal breathing.  They still are hideous though, preceded by the awful adrenal surge of doom and then the hideous heat/panic as if wearing a heavy coat trapped in a sauna.

When all this first started, I had *whole nights* with no sleep, working full time, it was a living hell, walking into walls.

Stellajane, I think I'll be in that small category of women who have sweats forever, jeez.

An indication of my stupid body's sensitivity to hormones - I *know* that I get systemic absorption from Vagifem, people will say otherwise but I know my body.  Three times I've used VF (stopped that too) to see what would happen and yes, that evening I had a migraine. 

The fabulous choice:
[NO HRT] Night sweats/insomnia/sleep deprivation, slight improvement in migraine, no Utro (fab)
 -V-
[WITH HRT] crippling migraines and taking vile Utrogestan (most women are able to tolerate it) and resulting depression mood changes but much lessened night sweats.

What also drove me to stop Utrogestan was for the sake of my relationship.  the boiling anger/rage/depression that it creates, my partner gets brunt of it - he said he is scared of me, walking on eggshells - last use of Utro, during a heated argument I threatened to stab him (!) fortunately I didn't have a knife in my hand - then felt such dreadful crying remorse afterwards.  Progesterone drives me nuts, unsafe.  Mind you, I'm no fun without HRT but at least not axe-wielding.

As I am typing this my sweaty wrists are sticking to the PC, ugh.  Nice.

Oh, what to do ... round and round in ever decreasing circles.

Currently researching 'alternatives' like a mad woman, hoping to find The Holy Grail.

If I find it, I'll let you know ...

[Night_Owl]

ps: Thinking about CBD (Cannabis Oil) although from what I've read what is sold online/in health shops doesn't contain enough of the effective ingredient.

[CLKD]

Have a look-see at the NAPS web-site and ask there.  Also, Ovacome - the support group for ladies who have had ovarian cancer may help.  Cannabis oil can be prescribed by a Consultant but they are not spreading usage across many specialities yet.  Again, might be worth asking, I think it's aimed at those with epipsey thus far.  [watched a programme this week about a family desperate to try it for the 16 year old son, badly affected].

A bit off kilter but if one doesn't ask 

How is your diet?  When I had severe PMS NAPS advised me to eat every 3 hours even in the night.  They have good advice on their web-site, I looked yesterday.  Slow release foods can help anxiety.

[Ladybt28]

Hi Night_owl - can you drop your utro to 7 days as per the Studd regime?  Nick Panney is his protégé I think.
I too am progesterone intolerant and am having to go down from 10 days to 7.  Actually quite a lot of women cannot tolerate it and when they are fertile their own bodies production of progesterone can be the thing that produces suicidal PMT!  You've heard of cases in the paper where menstural women have killed their partners right?

Which oestrogens have you tried?- I have noticed more and more posts here that where one type causes migrains for some, it is fine for another.  It could be you don't have the right type of oestrogen for you or the right delivery method.  They all seem to have different effects different people despite being "bio-identical oestrogen" and in theory working the same.  Everyone here knows they don't.

I can't do everol nor can I take my oestrogen orally.  I have only managed find the gel works for me and then I had to play around from 1 pump right up to 4. I couldnt budge my anxiety, insomnia or left eye headache on anything else.  I take Utro but will be reducing my days to 7 on the next cycle.

[CLKD]

Dr Kathleen Dalton represented several girls in Court who had killed due to premenstrual syndrome. 

[Night_Owl]

Any progesterone seems to send me psycho/nuts, my own used to - lifelong terrible periods/PMS/acne up to late 20s - assume I've always had hormone imbalance / endocrine issues.  Difficult case to treat.

My dear departed Mum had hyster plus ovaries out at 39 for agonising endometriosis, she never took estrogen, I wonder how she would have been if she did.

I did actually see NP at last appointment, he said I could go down to 7 (from 10) x 100mg Utro, *6 weekly* which I had been doing for quite a few years - and that yes, progesterone intolerance can worsen further with age. 

Particularly over the years I've noticed the withdrawal after stopping Utro has got more extreme, more suicidal, life's not worth living overwhelming thoughts.  It's a mad cycle and I'm tired of it which led me to once again throw in the towel.  I realise that my own natural production must be down to zero now, being 12 years post-meno.

Oestrogens I've tried: Oestrogel (worsened migraines, too many peaks and troughs) Evorel 50, Estradot 50 (didn't agree), Estraderm 100, 75, 37.5 (cut to dose), 25, (Femoston and Elleste in early days, disastrous).  By far Estraderm 25 seemed the most kind delivery and best at lower dose.  My estrogen blood level was less than 100 on 25 patch which the clinic said was okay as not everyone needs high levels. On higher estrogen than 25 patch I had hideous period pains and worse migraine.  Unfortunately I'm particularly sensitive to micro fluctuations.

If I give in and go back on, maybe I should think about trying a different type patch - the clinic told me they're all more or less the same but I agree, they do have different effects.  I just can't face thought of taking Utro again though, of going to that deep, dark hole again ....

Ladbt28, so you are able to tolerate 7 days, is that per month or longer cycle - how do you find the withdrawal?

[Ladybt28]

It's a longer cycle - it's not been agreed with my medics but... - I just do it cos I have worked out it works for me!  So currently I am working on 21 days oestrogen before I start 7 days utro.  I don't have much of a problem with withdrawal when I only take 7 days. I have a problem when I start it because 3 days in, I am falling down the rabbit hole.  I have the same suicidal issues as you if I take it longer term 10 or up to the 12 days you are supposed to take it, I can barely manage 10 and then I have to try really hard, so am cutting to 7.  I was given it continuously at one point because I am post meno at 57 and it's a wonder I am still alive!

I do know of one person on the forum who only takes 3 days but does not speak about it publicly because it is advice which is outside the conventions. she has regular scans under her consultant.  I think200mg for 3 days and she bleeds on 3 days!  It is not talked about because it is considered controversial on the forum and causes a bit of a furore especially when there are new people asking about hrt rather than seasoned old hands like is who have been there and got the T shirt   I can't remember - she could be under Studd herself? - it is a long time since we messaged!

Next cycle I am planning to push it to 28 days + 7 utro because after my bleed which lasts 4 days it takes me another 4 days to start feeling right and it takes up too much of the "month" so to speak what with bleeding and "going down the rabbit hole".  I need a bit more of my life back.  It has taken a very long time to get to this point to get the right hrt and then to work out how to use it best for me has taken 7 months in total - prior to that I'd been at it 3 years and then I was on prempakc for 7 years but didnt know any better that it didnt work for me at all!

I get no peaks and troughs with my gel but I am on 4 pumps which is high, all 4 done in the morning but I do know some women who get peaks and troughs split the dose 2 morning 2 evening.  I have never had a blood test ever.  My treatment has been on the NHS and based on symptoms and much trial and error like you.

[BlueButterfly]

My dear departed Mum had hyster plus ovaries out at 39 for agonising endometriosis, she never took estrogen, I wonder how she would have been if she did.

Estrogen would most likely have been absolutely terrible for her. Endometriosis responds to estrogen (telling it to grow). So it's better to avoid it. It's also why it can get so bad in peri since progesterone drops first and estrogen can fluctuate wildly, jumping very high at times. My family deals with endometriosis a lot. My mother and most of her sisters all had hysterectomies before 30 or shortly after because of it.  I have it as well as several cousins.


Best of luck trying to find something that will work for you. It sounds like you've really tried quite a bit. But I agree with what you said about trying a different patch if you do go back on. It is not true that it is all virtually the same. I've been told that with many combined pills in the past and everything as well and that is certainly not true. While the "active" ingredient might be the same, the whole concoction isn't. I really think they just say they are the same because they offer the same therapeutic benefits...certainly not the same.

[Conolly]

Hello Night_Owl,

Love your username! Tell me about your migraines... have you been experiencing them in perimenopause or before?

I have trialled Estradot+Utrogestan for 3 months and gave up for 4 reasons: it didn't touch hot flushes and anxiety, it worsened migraines, Utrogestan made me suicidal and I was in late peri so I wanted to know when I was menopause wise (2 years now).

I haven't taken any other drugs (HRT or alternatives) ever since. I am managing hot flushes with ice packs, gel packs, fan, sipping cold water, no caffeine, no alcohol and mindfulness (have just started some yoga at home). They have decreased in number and severity. Anxiety has vanished along with hormonal fluctuations, thank goodness, although I have always been an anxious person, but nothing like hormonal driven anxiety. I'm sleeping much better now and migraines have completely vanished (fingers crossed), never had any suicidal thoughts again.

I have decided that I want to stay away from migraines and periods, both have plagued my life throughout my fertile days (40 years). Enough is enough. Hot flushes are nothing compared to them and as long as I can manage to have restorative sleep, I'm going to stay drug free for as long as I can.

If VA strikes lubricants and moisturisers will be my first line of choice.

I have read a lot of posts from a former member called Elizabethrose who had awful migraines and couldn't stand oestrogen, she eventually stabilised on Vagifem but she also had signs of systemic absorption. Have a look at her posts!

Hope you find an answer soon!

Conolly X

[Night_Owl]

Thanks All for posts and information.

I was on long cycle - Estraderm 25 patch with 6 clear weeks (42 days) of 'estrogen holiday' then Utro 100mg x 10 nightly, v-route.  **This regimen was only prescribed under the guidance of Meno Clinic + yearly endo scans**

Similar here Ladybt -
Days 1-3 = slightly energised
Day 4 = feeling hideous, struggle badly for the remaining 6 days, eg. can't wake up in mornings
After stopping, (murderous) PMT off charts for 5 days
Then withdrawal bleed (old blood) occurs for 4-5 days
Further 5 days to recover
= Total days feeling ghastly: c.21 which is too long and no way could I be doing that into my 60s/70s.

Too much/strong? progesterone for the small amount of estrogen - but a necessary evil.

Migraines occurred at any time, when on estrogen only and when on Utro, so I couldn't identify prog as the culprit - it's more the fluctuation - maybe 6 weeks is too much estrogen accumulation.

I used to feel better immediately when I finished taking the Utro, however not so recently.

CLKD, I've been watching my diet, trying to eat well however I've gone back to the madness of eating gluten free oat cakes and bananas at 3am and 4am in the darkness whilst busily worrying about the future. Fun stuff.

Connolly, thank you, very encouraging to read your post, how brilliant that the flushes have decreased, the migraines have vanished and you're sleeping - how wonderful, that would feel like a dream come true!  I will look up Elizabethrose's posts.

Migraines started at c.9/10 years (start of puberty) then tailed off around 25 - returned severely when periods stopped at 44.  I was peri in late 30s but didn't realise, just felt ill all the time and didn't know why. 

The Meno Clinic have always maintained that the mig is due to low estrogen, however I feel it's more to do with fluctuation, would you agree ... afterall, I couldn't have had much estrogen as a 9 year old.  My poor Mum had mig up until she died at 83, although not as severely as mine.

(I've been using Vitamin E capsules and coconut oil for the VA).

[Hurdity]

Hi Night_Owl

Good to hear from you but not under such circumstances - I was wondering how you were doing?

The other members are giving you lots of great, advice but I know you have actuallly tried pretty much everything over the years and you are sadly very sensitive to both oestrogen and progesterone.

I also remember that unlike many women, you haven't been able to go onto a longer cycle even with that very low dose oestrogen of 25 mcg without your womb thickening too much.  Great that you are now able to reduce your numbers of days on the prog. I presume this has been agreed rather than lengthening your cycle to absolutlely minimise the number of days you have to take the dreaded prog? You are clearly in the best hands and being monitored.

No-one should dispute that the oestrogen from Vagifem is absorbed systemically - it's just that normally this is a very small amount - but if your tissues are not plumped up (due to maybe not being able to take a high enough dose?), more is absorbed, and because your HRT oestrogen is also low dose that would be a reason why you could be noticing it?

One thing I'd forgotten and not clear about is your getting migraines even with oestrogen? I can't remember whether you were getting them all the time even on the oestrogen only part of the HRT, or just during the prog part and the withdrawal?

I can't really offer any suggestions  - but just a couple of thoughts. In your position - if I could tolerate oestrogen for long enough on its own without migraines - I would seriously consider a (sub-total) hysterectomy at this point - despite the problems that it can cause, just because you are still so young and if you might be one of those who has debilitating flushes and sweats for years to come - well to me the prospect of a better quality of life would seem override the potential problems from the hysterectomy.

Secondly - and this is contrary to anything you've taken so a long shot - and I can't remember if you've tried it yet, is the Duavive? That does not contain a progestogen but a different drug that stops the oestrogen thickening the womb lining. However it is a tablet and the oestrogen is made from horse pee - but if you were prepared to give it a try I would say sod the principles in your case! I know tablet HRT is generally contra-indicated for migraine sufferers - so maybe it has been ruled out altogether? Does Nick Panay or has he suggested taking this compound (Bazedoxifene) along with the oestrogen you have already been taking? I know this would be very much off licence but it is available as a separate drug - although maybe not at the same dose as in Duavive.

Finally - Dancinggirl is in a similar position - not regarding the progesterone intolerance and migraines - but in deciding to stop HRT in her early 60's (after many years of taking it on and off,) due to ongoing problem with bleeding etc. Hopefully she will be along to tell you how she is coping with the returning flushes etc but she hasn't been around much recently so maybe if not, send her a pm ( if you get notifications of these by e-mail).

As you said and Stellajane echoed - it does seem weird having bleeds in your 60's - and I do wonder about my poor old uterus - but I don't know what the alternative is either? You are still quite young though....

Sorry I can't be of more help but did want to try to suggest something...

Hurdity xx 

[Ladybt28]

So ref Migraine
I started periods at 13 and soon after started with "migraine" surrounding my left eye and the left side of my face plus I used  to get a weird feeling at the hollow of the back of your neck where it joins the spine, like someone had cracked you on th back of the head.  No aura but it would make me feel nauseas but I wasn't sick. 'Went on the pill at 16 and they remained the same. For the next 40 years this very debilitating pain in my face continued off and on without what seemed a pattern (or maybe I missed it?) meanwhile I had every test imaginable sinus, eyes, nose etc etc.  No meds shifted the pain which when it was bad came and stayed for up to 3 weeks at a time.

I stopped the pill and the headaches lessened - possible clue, just maybe but still no real pattern? got a normal coil but I still got them.  Neer really ever got rid but probably periods where I just didnt notice they were that bad.  Meno they were back with avengence.   I was on anti-depressants fro 40 years which was totally wrong because my depression turns out has always been hormonal.

Femeston brought a headache that lasted 6 weeks! needless to say no more Femeston! I am now pleased to say that since my gel & utro, they have gone?  No left sided eye headaches or weird feeling at the back of my head.  You mention high oestrogen and my dose is considered high but you have done that with other oestrogens and it has made no difference to you??  I dont know why mine have gone but it is definitely hormonal and why nothing seems to shift yours Night_Owl?