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[Peacegirl]

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.

[CLKD]

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 ? 

[MicheleMaBelle]

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

[CLKD]

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? 

[MicheleMaBelle]

cLKD- higher risk of endometrial cancer.

[CLKD]

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.

[Peacegirl]

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 .

[Mary G]

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. 

[CLKD]

  Mary G

[Peacegirl]

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.

[Mary G]

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. 

[paisley]

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

[MIS71MUM]

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.

[CLKD]

    

It's such a huge step to take ......... always worth asking the ins and outs B4 signing the Consent Form 

[Peacegirl]

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.