Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Night_Owl on July 21, 2018, 01:44:33 PM
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Has anybody had a hysterectomy due to severe progesterone intolerance (HRT) - to be able to continue taking estrogen only?
Caught between a rock and a hard place - need to take estrogen as it helps alleviate chronic migraine, however I can't tolerate *any* type of progesterone, been through the spectrum - last hideous use of Utrogestan has made me realise I can't ever go there again, it turned me psychotic.
Obviously a hyster is drastic and I've been pondering this for years since the Panay Meno Clinic suggested it - need to take estrogen long term and there is no other way.
Any advice / comments appreciated, with thanks.
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For anybody who may be interested - if you find that you are progesterone intolerant and experience extreme behaviour when taking progesterone and with the withdrawal - it mimics PMT, menstrual psychosis - this article explains a lot - there is also (hopefully genuine) a comment from Professor Studd at the end of the article.
http://www.dailymail.co.uk/health/article-2339186/The-women-told-theyre-depressed-fact-menstrual-psychosis.html
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I know nothing about hysterectomy, but could you not have an ablation? Would that not remove the lining and stop it returning?
I might be talking tosh. I just wondered.
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Sadly, if you have a uterus you do need progesterone while on HRT. It's a good question though SueLW.
Taz x
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Thanks - Will ask at next Meno Clinic appointment re: ablation - wondering if hyperplasia can still occur after ablation and if it has to be done repeatedly, have no idea on this.
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You would still need progesterone after an ablation. I agree with Taz. X
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Watching with interest, I cannot get on with progesterone at all, my GP has said I have to have a last ditch try with Mirena before any Dr will consider me for a Hysterectomy. So had it put in last week, just waiting to see how it goes .......
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I had an ablation in 2016 stopped periods completely but still having to take progesterone as part of my HRT
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Night_Owl, I can really sympathise because I am severely progesterone intolerant and on HRT for life so I am in a similar situation to you.
I was advised to have a hysterectomy and I will do so eventually but I can't take time out to have the operation now. It is a long recovery time and I can't possibly be in a situation where I can't drive, at the moment at least.
If you can face the operation a hysterectomy would probably be your best option but an ablation would be a good interim measure and there is virtually no down time. I know you would still need progesterone BUT you can do a three month cycle with no risk of breakthrough bleeding - something that is difficult to achieve without an ablation. I know it's not ideal but a three monthly cycle might be more palatable and make all the difference. You probably wouldn't have the ensuing bleed either.
I think the final decision depends on how progesterone intolerant you are. Unfortunately, you can't just flick a switch and make yourself able to tolerate progesterone.
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Yes Night Owl
I had a full hysterectomy because I was very severely progesterone intolerant. I had mine in 2011
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Did it work paisley? This sounds very encouraging.
Taz x
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Thanks All for replies and suggestions. You know when you get to a point and think - *no more*, end of the line for any type of progesterone.
"Unfortunately, you can't just flick a switch and make yourself able to tolerate progesterone." So true MaryG - for some women the intolerance can get even worse with age as the body becomes less able to process prog.
I've tried increasing Vagifem and estro to reduce absorption, however it makes not a jot of difference - the intolerance reaction overrides it.
Sarastolly, you are brave having the Mirena, I was never able to agree to it as feared not being able to remove it if the side effects sent me crazy.
Paisley, did your health/ mental state improve with not taking prog, have you found some stability (on estro only)?
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I asked my gyn for a hysterectomy cause I wanted to minimize breast cancer risks taking only estrogen.
He was adamant that it is a very hard operation and he would do something like that only if there was a serious medical reason for hysterectomy.
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Emerald - having had one for prolapse (which thankfully went well) I would agree. It is major surgery even when done vaginally or via laparoscopy with few visible wounds.
Taz x
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To have a hysterectomy is a very difficult decision. Obviously once your ovaries are removed there is no going back.
I would love to tell you that everything is fab now but it isn't. 7 years later & I am still trying to find stability. Yes it is easier as I don't have to worry about progesterone any more but I really didn't think it would be this hard to find stability on Oestrogen only. But as with everything else as we all know every woman is different & there probably lots of women doing fine. I just wanted to be honest as it is a very drastic step to take. Xx
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Thanks for comments.
Paisley, appreciate your honesty - sorry to read that you're still struggling, sounds lame but hope you find some stability in time.
So true every woman is different and unfortunately I'm *always* in the minority, hyper-responsive category who doesn't respond well to medication/treatment, just to add insult to injury, so sick of my weak constitution. Over the years I've discussed hyster with the Meno Clinic and pondered for so long as of course it's such a massive decision - through fear I already imagine changing my mind and jumping off the operating table at the last minute just before anaesthetic! My ovaries are now "undetectable" on scans so they would be left in place.
Duavive I don't see as an option for ethical reasons and prefer transdermal.
If I come off HRT altogether, without estrogen I will be back to feeling (more) suicidal with constant migraine and worsened anxiety/depression, a life not worth living. However a life with taking progesterone, albeit every 6 weeks, is still life-ruining, of no quality with the psychosis/imbalance/disruption it causes. We are all so hugely different, some women are fine on it.
If only there were more choices of HRT for progesterone intolerance.
Tried various ADs in the past, all gave hideous side effects.
No solution really ... sigh ... round and round in ever decreasing circles, no hope.
The sun is shining but couldn't feel more miserable. Sorry for the whinge, very low in spirits.
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Night_Owl, I'm sorry you are feeling so low but it's understandable.
Honesty, I think you have reached the end of the road and a hysterectomy is your best option. You clearly can't tolerate progesterone at all and like me, you desperately need oestrogen to feel good and keep the migraines away - there is a link between migraines and depression incidentally.
The fact that your ovaries are no longer viable should mean you don't have the side effects that younger women have when they have a full hysterectomy.
Think of the benefits, no progesterone ever again, no periods, no more uterine scans or at least not the endless scans that progesterone intolerant women have to have.
I know it's difficult but you might feel better when you have spoken to a specialist about the operation.
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Hi Night-owl
I certainly don't want to put you off as the big advantage is not to have progesterone anymore. I do class that as a really big plus. I just thought that after I had had a hysterectomy it would be a doddle for me to only have to think about Oestrogen & stabilizing on that would be so easy but it wasn't. I have read on other sites about women who have had hysterectomies & sailed through it & feel fantastic. I unfortunately just seem sensitive to hormones with progesterone being the absolute worse. So have a good look around on other sites where women have had hysterectomies & see how they are doing & coping. I hope you too can find stability. Xx
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Night owl
Sorry for late reply I have had problems getting on forum
I couldn't tolerate any progesterone and my womb lining was getting thicker no matter how much they gave me. I eventually agreed to the mirena coil out of sheer desperation and it didn't help my womb lining. Due to this the consultant said I could have a hysterectomy which i was over joyed with due to the increasingly growing womb lining and the progesterone intolerance plus pms! My hysterectomy was March 2017 and I can honestly say it's the best decision I made. I haven't looked back.
I use sandrena gel for the estrogen, it was a straight forward operation done via laparotomy
I know I very lucky and not everyone has such a good outcome but it was the correct decision for me
Xx
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I had to reply to this, Nightowl. Please, please don't have your ovaries removed unless you absolutely have to. Hysterectomy - ok. Oophorectomy - complete other ball game. Trust Paisley and I - this is a very, very tough road and getting HRT right isn't as easy as many people assume who haven't experienced the aftermath of this surgery.
Wishing you luck, whatever you decide. xxxx
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Just adding - the ovaries continue to produce androgens due to the sparing of the stromal compartment well into old age, even if they are 'non viable' as regard to estrogen production. This is why, I feel, that women who retain ovaries have a greater sense of wellbeing than those who don't. xxxx
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Thanks to All for your comments and useful information - much appreciated and so helpful.
The ovaries would stay - 12 years post meno, they 'dissolved' a while back and I experienced a further decline overall.
The fear is how you're going to feel further down the line, a thousand questions - will it be worth it, can it worsen depression/anxiety. So difficult as no way of knowing. We're all so different.
Much pondering. Just know for certain that whatever happens I can't ever take (any type) progesterone again.
Thanks again.
xxx