Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Peacegirl on July 08, 2017, 11:56:43 AM
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Not sure if this belongs here or on other topic area.
I only ask because what happens if you need oestrogen but in the end, really can't take progesterone? Im hoping the answer isn't 'you have to come off hrt and suffer' because i'd like my last years on the planet to be reasonable rather than just being ill and missing out on life.
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Elective rather than emergency, of course. GP refers to appropriate Consultant who should discuss surgical intervention and what HRT may be required, though many miss out the latter preferring to refer back to the GP >:(.
Hopefully someone who knows more about HRT combinations will B along, I didn't want to cut and run ::). Some ladies I think use regular oestrogen and progesterone less regularly ? :-\
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Hi Peacegirl- I'm also progesterone intolerant so have just come off HRT to see how I go.
My consultant has suggested estradot and longer cycle utrogestan but I'm not comfortable with the fact that there is a higher risk and having to undergo annual scans. I'm going to see how I do first before making any other decision.
He did say I could elect a hysterectomy but it's quite a radical move and needs careful consideration. At the moment, it's not something I'm contemplating but it's an option.
M x
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Ladies usually require HRT following hysterectomy though not progesterone if I remember correctly? Hysterectomy is a huge operation which needs planning for (i.e. food in the freezer, house-work sorted) as well as plenty of rest time after. Think about what you want to achieve and what symptoms U would like to sort if you don't elect the operation.
What 'higher risk' Michelemabelle?
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cLKD- higher risk of endometrial cancer.
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How high? Worth risking in order to get a Quality of Life? As an aside my breast consultant told me that tamoxifen was 'safe', however a friend died of womb cancer :-\ albeit 15 years after surgery.
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Hi Peacegirl- I'm also progesterone intolerant so have just come off HRT to see how I go.
My consultant has suggested estradot and longer cycle utrogestan but I'm not comfortable with the fact that there is a higher risk and having to undergo annual scans. I'm going to see how I do first before making any other decision.
He did say I could elect a hysterectomy but it's quite a radical move and needs careful consideration. At the moment, it's not something I'm contemplating but it's an option.
M x
Hi thanks for the reply, how's it going without hrt? I guess I've just tried so many things plus my specialist was so negative that I'm trying to be ahead of the game in case my latest regime doesn't work out. I can understand why you wouldnt want to accept the higher risk, it would be something I'd have to consider carefully. I'm not at the stage where I have to consider a hysterectomy yet but I just want to know what all the options are. Can you tell me what progesterone intolerance feels like? Other than diahorrea, headaches, bloating- I've just felt like I've got low level flu for the last few weeks - could be a very stubborn virus I suppose. Really hope you do better off the hrt. That will also be an option on my plan 'b' 'c' 'd' etc .
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peacegirl, I am also progesterone intolerant and have been advised to have a hysterectomy in the long term. At the moment, I am taking a very drastically reduced dose of (vaginal) Utrogestan under supervision with regular uterine scans and it is working extremely well at lining clearance and thinning. However, I don't want to have periods for the rest of my life so unless someone invents a modified form of Oestrogel (like DUAVEE) that stops the womb lining building up, I will have to face a hysterectomy at some point.
If you are progesterone intolerant, you can't just flick a switch and make yourself able to take progesterone.
If it hadn't been for those wretched studies, there may have been more research and development of better forms of progesterone or a less drastic medical procedure for progesterone intolerant women - something like an ablation. I feel strongly that the progesterone options for women are very poor indeed and even women who are not progesterone intolerant per se often don't feel great while taking it. It is also where all the HRT risk lies.
CLKD is so right, quality of life is vital and I think there are plenty of women who are progesterone intolerant who could safely reduce their dose and have a better quality of life.
There is only one way to find out how much progesterone you need and that is to have a uterine scan and have your lining measurement taken. No doctor can tell by talking to you from the other side of a desk. The NHS over-prescribe the progesterone part of HRT because they do not routinely offer uterine scans.
I wish there were better options available.
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:thankyou: Mary G
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peacegirl, I am also progesterone intolerant and have been advised to have a hysterectomy in the long term. At the moment, I am taking a very drastically reduced dose of (vaginal) Utrogestan under supervision with regular uterine scans and it is working extremely well at lining clearance and thinning. However, I don't want to have periods for the rest of my life so unless someone invents a modified form of Oestrogel (like DUAVEE) that stops the womb lining building up, I will have to face a hysterectomy at some point.
If you are progesterone intolerant, you can't just flick a switch and make yourself able to take progesterone.
If it hadn't been for those wretched studies, there may have been more research and development of better forms of progesterone or a less drastic medical procedure for progesterone intolerant women - something like an ablation. I feel strongly that the progesterone options for women are very poor indeed and even women who are not progesterone intolerant per se often don't feel great while taking it. It is also where all the HRT risk lies.
CLKD is so right, quality of life is vital and I think there are plenty of women who are progesterone intolerant who could safely reduce their dose and have a better quality of life.
There is only one way to find out how much progesterone you need and that is to have a uterine scan and have your lining measurement taken. No doctor can tell by talking to you from the other side of a desk. The NHS over-prescribe the progesterone part of HRT because they do not routinely offer uterine scans.
I wish there were better options available.
Thanks Mary g, sorry to hear you may have to face a hysterectomy and yes quality of life is a huge issue when weighing everything up. The specialist I saw last time said thst uterine scans were pointless as they don't detect endometriosis. This in response to me telling her I was taking utrogestan on alternate days as it made me feel so rough, but was willing to pay for private scans. I mean there was no discussion it was instant shut down. I won't be going back there but I'm worried my gp will be reluctant to go against my specialist now she's written a letter saying she's told me I should've taken it daily and i must take the provera daily. Had I been able to get hold of someone by phone (you can't ring them direct, you have to leave a message and hope someone calls you back within a week and hope you don't miss the call) then I wouldn't have elected to do this unsupervised but I felt I had no choice at the time. Oh well, I'm not at the end of the road yet, just thinking ahead a bit as so many things haven't worked out these past two years. Thanks again.
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Peacegirl, sorry, I'm a bit confused because you mentioned endometriosis and I didn't realise you had that condition. I don't know much about that but I do know that internal ultrasound very definitely does measure womb lining and would definitely pick up endometrial hyperplasia.
Dare I suggest a visit to Professor Studd? If you are progesterone intolerant, he would prescribe 100mg (vaginal) Utogestan to be taken for 7 days every month.
The treatment you have had so far sounds very poor to say the least.
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Hi Peacegirl I had an elective hysterectomy because I could not tolerate progesterone of any kind at all. It made me crazy. I also visited Dr Studd & the utrogeston he prescribed I still couldn't tolerate, made me feel the same. I would not recommend a hysterectomy but the positive is I don't have to take progesterone anymore but I still have never found a good oestrogen either. It is a very grastic step to take & if I had the choice again I probably wouldn't have done it but obviously this is just my own personal view
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Need to add my opinion here! I think I'm progesterone intolerant too. I had Total Abdominal Hysterectomy in January this year aged 45.
I did have Adenomyosis and Fibroids too and bled constantly.
I have been very lucky, I had no ill effects from the op...my only regret is not having my ovaries removed at the same time as I still suffer monthly depression.
My op was complicated in the fact that my womb was welded to my bladder! But I was home after 2 nights in hospital and at work 6 and a half weeks later.
I knew I would have to have a hysterectomy at some point so my thought was the younger I was the easier the recovery would be.
Again this is just my experience.
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:wub: :thankyou:
It's such a huge step to take ......... always worth asking the ins and outs B4 signing the Consent Form ;)
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Peacegirl, sorry, I'm a bit confused because you mentioned endometriosis and I didn't realise you had that condition. I don't know much about that but I do know that internal ultrasound very definitely does measure womb lining and would definitely pick up endometrial hyperplasia.
Dare I suggest a visit to Professor Studd? If you are progesterone intolerant, he would prescribe 100mg (vaginal) Utogestan to be taken for 7 days every month.
The treatment you have had so far sounds very poor to say the least.
Hi Mary, sorry for the confusion no I haven't got endometriosis as far as I'm aware. I could've pointed out to the specialist what a ultrasound scan does but she seemed quite closed-minded and intent on 'telling me off' (it felt) so I didn't want to push the issue. She's reiterated all of this in a letter to my gp too. I've just stopped taking utrogestan not merely because of side effects but also because I had the exact same hair - shedding problem as with norethisterone. I am remaining open to the idea of the hair loss being caused by something else but I guess the next few weeks on provera will tell.
Thanks MI71MUM - that's interesting and useful to know. That sounds like a tough op!
Paisley - thanks for sharing too - it's such a shame for you that this hasn't improved things for you.
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CLKD, wise words as always. With an operation like a hysterectomy, it vital to know all the ins and outs before going ahead with the operation.
Peacegirl, depending on how the Provera works out, I hope you consider consulting a menopause specialist even if it is just to get another opinion.
When I take high doses of progesterone I also get more hair shedding so perhaps that a common side effect. Now I am on a super lose dose, my hair shedding is back to normal.
Please keep us updated on your progress.
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Tnx Mary G. The only time I wasn't aware of what the Consent Form said was when I was heavily drugged, prior to removal of my appendix which should have been done by key-hole surgery: it turned out that he used the Key to Westminster Abbey :o ::)
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Gosh Peacegirl - your "specialist" sounds scarily ill-informed! What level was this person?
Of course the first indication of any uterine problems is abnormal bleeding - but this is generally related to endometrial thickness so an annual scan will help decide whether this is within normal limits. Endometrial hyperplasia and therefore cancer is very well-correlated with endometrial thickness so what the specialist says is not the case (that it's not worth having scans).
Although you should not have to do so, the fact that you offered to pay for private scans should have meant that the "specialist" could vary the licensed prescription - but of course you want to have medical supervision and endorsement for this.
AS far as I know you still need to take a progestogen even after an ablation which I think is the modern version of the old "D & C" - someone correct me if I'm wrong? What I don't know is, if an ablation means you can take less prog to protect the uterus for a given dose of oestrogen and therefore that it would be better for severely prog intolerant women. If this is not known then this is the sort of area where more research is needed.
Re the risks of endometrial cancer - as I said this is related to the thickness of the endometrium and it goes through stages and thickened linings can lead to endometrial hyperplasia of which a very small proportion lead to cancer. For anyone who varies the progestogen regime under supervision - the thickness is being monitored and measured and therefore the risk of anything getting anywhere near cancer is very much reduced.
One solution is - under supervision - perhaps to lengthen the cycle slightly and shorten the prog dose slightly - eg 10 days of prog in a 5 week cycle - and ask your specialist to monitor this through perhaps 6 monthly scan to start with - until you know how your uterus behaves. Of course this is tricky if you are still early in the peri-menopausal transition because tyour own cycle comes into play but once you are post-menopausal it should be possible.
So Peacegirl - please don't despair - you should be able to find a regime you are able to tolerate without the drastic step of having a hysterectomy - and I have always been strong advocate of not suffering needlessly because quality of life is so important, especially as we live so much of our life post-menopause!
Hurdity x
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I just have to say that I really admire the great advice on this thread. I have many times considered how much easier it would be to not have a uterus so as to avoid the progesterone piece of HRT since I am intolerant as well. However, I don't think most doctors will even consider it unless there are clinical indications for the hysterectomy (i.e. firbroids, adenomyoma, severe endometriosis or other concerns.) It is a major op and hard to tell how one will adjust afterwards. Most women I know who have had hysterectomies have felt fantastic but they were having them for very vexing issues such as severe and intractable bleeding, growing embedded fibroids, etc.
Hurdity, the ablation is a thermal or laser destruction of the endometrium. It is much more permanent than a D&C. I'm not sure if the destruction is utter and total to the degree that no progresterone would be needed. But it's an excellent question and one that I'd like to know the answer to as well!
Can I just say, as an aside, that I am continually impressed by the level of care, concern and knowledge that longer time members bring to those of us new to the forum? It is a lovely thing to witness and I (for one) am most appreciative. As others have mentioned here, and in other posts, it is so often the progesterone component that causes side-effects with women using HRT. The idea of less frequent use (regimen mentioned by Hurdity) is something to consider, under the knowledge and approval of a qualified practitioner.
I do 10-days/month of 200mg Utrogestan and I don't even get a bleed. But I'm on a very low dose estradiol (0.025 patch as of now) and believe I am not even building up enough lining to shed. Perhaps this also because I believe I am post now and my own hormones have stopped 'interjecting' here and there.
A thought on this: the higher risk mentioned earlier in the thread would be estradiol-dose dependent, wouldn't it? Someone using a 1.0 or 0.075 patch (considered relatively high dose) will likely build up far more endometrial tissue than a woman using a 0.0375 or 0.025 patch. I don't think there are 'absolutes' when it comes to 'increased risk'. I would imagine individual absorption rate affects how much the lining responds to a given dose of estradiol. Additionally if in peri and your own estradiol is still kicking in, this complicates the picture a bit. It really boils down to your own physiology and how your body responds to your dose of estradiol.
There must be a workable solution short of hysterectomy and I do hope you find one peacegirl! Good luck!
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I have had an ablation...very successful- no more bleeding. Because a few cells could be left that could multiply you need progesterone. I wonder if you went to a specialist a more tailor made regime could be considered with less progesterone? If it's as simple as less womb lining = needing less progesterone but like you say, who knows?
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I just have to say that I really admire the great advice on this thread. I have many times considered how much easier it would be to not have a uterus so as to avoid the progesterone piece of HRT since I am intolerant as well. However, I don't think most doctors will even consider it unless there are clinical indications for the hysterectomy (i.e. firbroids, adenomyoma, severe endometriosis or other concerns.) It is a major op and hard to tell how one will adjust afterwards. Most women I know who have had hysterectomies have felt fantastic but they were having them for very vexing issues such as severe and intractable bleeding, growing embedded fibroids, etc.
Hurdity, the ablation is a thermal or laser destruction of the endometrium. It is much more permanent than a D&C. I'm not sure if the destruction is utter and total to the degree that no progresterone would be needed. But it's an excellent question and one that I'd like to know the answer to as well!
Can I just say, as an aside, that I am continually impressed by the level of care, concern and knowledge that longer time members bring to those of us new to the forum? It is a lovely thing to witness and I (for one) am most appreciative. As others have mentioned here, and in other posts, it is so often the progesterone component that causes side-effects with women using HRT. The idea of less frequent use (regimen mentioned by Hurdity) is something to consider, under the knowledge and approval of a qualified practitioner.
I do 10-days/month of 200mg Utrogestan and I don't even get a bleed. But I'm on a very low dose estradiol (0.025 patch as of now) and believe I am not even building up enough lining to shed. Perhaps this also because I believe I am post now and my own hormones have stopped 'interjecting' here and there.
A thought on this: the higher risk mentioned earlier in the thread would be estradiol-dose dependent, wouldn't it? Someone using a 1.0 or 0.075 patch (considered relatively high dose) will likely build up far more endometrial tissue than a woman using a 0.0375 or 0.025 patch. I don't think there are 'absolutes' when it comes to 'increased risk'. I would imagine individual absorption rate affects how much the lining responds to a given dose of estradiol. Additionally if in peri and your own estradiol is still kicking in, this complicates the picture a bit. It really boils down to your own physiology and how your body responds to your dose of estradiol.
There must be a workable solution short of hysterectomy and I do hope you find one peacegirl! Good luck!
Thank you for a very helpful and interesting post. I've dropped the utrogestan and I'm seeng how the provera works -felt better after a few days but now my 'flu'-like symptoms have kicked back in. It's low level so I will manage with it if I have to provided my hair stops falling out which may take a while longer to slow down. I'm on 2 pumps of estrogel although sometimes these are smallish rather than full pumps and sometimes I dip a bit low and my symptoms pop up. I have had spotting or discharge but I wondered is this was down to me playing with the utrogestan dose. (I'm 57 post meno). I agree so much with what you said about this site. Its helped me be informed enough to take on unhelpful GPs and the 'specialist' is next lol! Hysterectomy would be a huge decision and last resort but after so many failures I just wanted to know where else there was to go eventually. I think you're right, it wouldn't be granted easily anyway.
Can I ask, how you cope with any side-effects from 200mg progesterone 10 days (if you have any).
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:thankyou: weather girl - lovely response in many respects!
Why does it have to be such Trial and Error at a time when ladies should be enjoying Life :-\ :'(
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CLKD, wise words as always. With an operation like a hysterectomy, it vital to know all the ins and outs before going ahead with the operation.
Peacegirl, depending on how the Provera works out, I hope you consider consulting a menopause specialist even if it is just to get another opinion.
When I take high doses of progesterone I also get more hair shedding so perhaps that a common side effect. Now I am on a super lose dose, my hair shedding is back to normal.
Please keep us updated on your progress.
That's interesting Mary g. Of course I will consider seeing a different specialist and hysterectomy would always be a last resort. I'm just stacking up all possibilities for peace of mind. The trainee specislists last word was 'if you dont want the mirena coil then I'm afraid we're running out of possibilities' which is rather s negative and problem focussed approach imho. I've been reading around this and utrogestan is not high on the list for hair loss but who knows how it's affecting our metabolisms which subsequently impacts on something else in the system? 🙄
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Maybe Peacegirl have a look-see at the web-site - which I need to look for - a hairdresser who is interested in providing wigs so there maybe be info on there - off to search.
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Here we are:
I found this whilst searching: http://www.mynewhair.org
Trevor Sorbie ...........
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Here we are:
I found this whilst searching: http://www.mynewhair.org
Trevor Sorbie ...........
thank you x
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That's Ok.. Sometimes it's about looking laterally ::) 'out of the box'.
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Yes great post weathergirl!!!
Yes the risk would be dose/duration dependent - higher doses of oestrogen for longer periods of time without progestogenic opposition would on balance lead to greater endometrial thickening ( proliferation) and needing higher doses of prog to shed it or thin it. And yes will vary individually in the extent to which we absorb oestrogen from the different doses and modes of delivery and of course our own uterus structure too ( eg whether fibroids etc as mentioned).
Utrogestan - being "natural" ie same molecular structure as progesterone - does not seem to be associated with hair loss in the same way as the other synthetic progestogens, although it has to be taken (orally especially) in such high doses that it could have effects beyond what we would expect normally from our own endogenous production which trickles out at a much more steady rate ( after ovulation).
Hurdity x
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CLKD and Hurdity, thank you both, and hugs! :hug:
Peacegirl, the side effects from the 10 days of progesterone are thankfully time-limited. I cope simply by knowing I just have 10 days and I'll be done! LOL! It affects my digestion, mood, energy levels and sense of motivation. Great for sleep, but that's about all. But I know others have it even worse, so I should not complain. If I had to take it daily, I'd be stopping the HRT though.
I hope you get better results (fewer side effects) with the Provera. It does seem to be a better choice for some women. Good luck and fingers crossed for you!