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Author Topic: Hysterectomy for severe progesterone intolerance  (Read 1228 times)

KiltedCupid

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Hysterectomy for severe progesterone intolerance
« on: September 09, 2019, 08:25:54 PM »

I've struggled for years now with debilitating prog intolerance. I've recently tried, several times, to stop hrt entirely in a bid to rid myself of the absolute hell that prog, any prog, wreaks on my body and mind. The nightsweats, brain fog, joint aches and emotional issues all return within a week of stopping hrt. I've just restarted oestrogen only patches after stopping all hrt for a week after 2 weeks on fem7 sequi prog phase patch. Within 24 hours I'm starting to feel myself again. This is evidence enough that I just can't go on with prog, I'm 57 and have a fair bit of life left in me including a badly neglected business to get back up to speed. I've tried all forms of prog including the 7 day Studd regime, none are tolerable.

I'd love to hear from anyone who's been in the same boat and who chose a hysterectomy and oestrogen only hrt with success.
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Hurdity

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Re: Hysterectomy for severe progesterone intolerance
« Reply #1 on: September 10, 2019, 07:17:35 PM »

Hi KiltedCupid

I think you are new so  :welcomemm:

Your post got missed..

Where are you based - are you in UK? It is not usual I don't think these days for hysterectomy to be given for prog intolerance - especially on NHS and I would suggest (maybe privately?) it would usually be a last resort because of the very real other problems that hysterectomy can cause.

If you are well post-meno and have no problems with your uterus (fibroids, polyps etc) then have you considered doing long cycle HRT? You have only been taking a medium dose patch (50 mcg) with the Femseven so if the oestrogen suited you and your withdrawal bleeds are light, then after consultation with your doc you could stretch the cycle so that you used the prog say to give an 8 week cycle in total (starting by increasing to 5 weeks and seeing how you get on). Also used vaginally ( did you try this way?) is associated with fewer side effects than orally due to fewer metabolic by-products.

There are many other prog-haters on here who are intolerant to a greater or lesser extent - some severely - and many of us do not feel ourselves on this phase. However for most it is a necessary evil to be tolerated in order to reap the benefits of oestrogen. Maybe give a longer cycle a try if your doc agrees or if not ask for a referral to a menopause clinic?

Hope this helps.

Hopefully others who have had a hysterectomy will be along to give their reasons for having one and any advice?

Hurdity x
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Mary G

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Re: Hysterectomy for severe progesterone intolerance
« Reply #2 on: September 10, 2019, 07:22:00 PM »

I can sympathise with your situation, I was there myself.  I would say it depends on your particular problem, for example, did you have a history of progesterone intolerance pre-menopause i.e. PMS? 

I thought I had become progesterone intolerant at menopause despite no history of PMS during reproductive years.  I did have problems with the contraceptive pill but never with my own progesterone.  I too used the 7 day 100mg Utrogestan regime for a long time but got to the stage where I couldn't take Utrogestan or any other form of progesterone cyclically full stop.  To make matters worse, I could no longer cope with the see-sawing hormones of a cyclical regime (it caused migraines) and found having periods made me feel terrible.  I was seriously considering a hysterectomy.

Long story short, I found a form of body identical progesterone that not only could I tolerate but actually made me feel good.  I really didn't think it was possible.  I now take 50mg progesterone every day and a separate form of oestrogen and testosterone every day and it is going extremely well after nearly a year with the added bonus of no periods!  I can honestly say I feel as good as I did on the oestrogen only part of my previous regime.  In my case at least, it is a case of the right type of progesterone at the right dose being absorbed in the right way.

If you are progesterone intolerant per se then this regime is unlikely to work for you but if you only struggle with progesterone used in HRT preparations then this regime might work.  It's not available on the NHS I'm afraid.

One other alternative is Duavive (oral form of HRT) which contains a low dose of oestrogen and a SERM that diverts oestrogen away from the womb and the breasts meaning you don't need any progesterone.  It might be worth reading up on it.  I tried the SERM (bazedoxifene) with a separate oestrogen but my symptoms returned so I had to ditch it but I didn't have any nasty side effects from the bazedoxifene.

If it turns out you are definitely severely progesterone intolerant and Duavive isn't an option then probably the only way to solve it is to have a hysterectomy and take oestrogen only HRT.  I know it's a big step and a difficult decision.

Feel free to send me a PM if you would like any further details.

I hope that helps.
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KiltedCupid

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Re: Hysterectomy for severe progesterone intolerance
« Reply #3 on: September 10, 2019, 08:02:27 PM »

Thank you Hurdity, my GP has already agreed to refer me to gynae for a chat about a hysto. Whether they agree or not is another matter. Yes, I've tried every possible combination of cycles and conti regimes, the most recent being 2 weeks on half fem7 patch which ended in the usual miserable conclusion.

Unless you're truly prog intolerant, you can't possibly understand just how it messes with mind and body. This isn't just a few days of feeling grubby, it's complete withdrawal from all normal activities, I split with my ex partner whilst on a prog phase, admittedly the relationship was strained anyway but prog messes with my emotions so drastically that I simply can't continue with it. Bat shit crazy would come close. My options are no hrt or hysto. I've tried no hrt several times now and can't manage my business and other responsibilities so I'm left with no option.

Thank you MaryG, your regime sounds interesting and I'd happily go private if I could find a solution, but I honestly think that I'm just intolerant to any prog, my own included. When fertile and not on bcp, my pms was overbearing and I suffered with post natal depression after my pregnancies, I've been told that's indicative of severe prog intolerance. I may consider duavive but would prefer not to use a mare's E. It may be something I have to rule out before being granted a hysto in which case I'd give it a whirl. It's strange because I'm ok, sometimes feel really good for 1st 2/3 days on prog but then the horrors start and I mean horrors.

I'll post with details of gynae response when I get an appointment.
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