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Author Topic: Progesterone Intolerance  (Read 10929 times)

sallyfff

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Progesterone Intolerance
« on: November 01, 2016, 09:23:45 AM »

Hello everyone.  I'm new to the forum and the website.  I've already found it very informative and supportive.  I have a problem that I can't seem to find any other people have discussed already.  I am 49 and pretty sure I'm perimenopausal.  I wont go into all the boring history - it really does get quite complicated.  Anyway, my GP and I agree that I seem to be progesterone intolerant.  I had the Mirena coil in for a few years and developed autoimmune progesterone dermatitis (itchy rash).  I have been on Zumenon for a couple of months now but my GP says I need to take a progesterone as well to protect my womb.  Knowing that I cannot tolerate synthetic progesterone, she prescribed me Utrogestan (sp?), bio-identical and supposedly the kindest one to the body.  It actually made me feel dreadful.  Anxious, teary, negative, angry (PMT x 100).  Off to the GP again.  Unsurprisingly, she kind of nodded in a 'yes, I thought that might happen' kind of way, but we have to be seen to have tried everything before referral to a gynaecologist.   My GP has referred me and said that probably my only option is a hysterectomy.  Sounds a bit drastic to me.  If I do go down this route, I want to leave my ovaries in but then I would still be producing my own progesterone, which I think has been the cause of most of my mood swings/severe PMT for at least 10-15 years.

This may be a naive question, but if I do have a hysterectomy, does taking more oestrogen kind of cancel out the negative effects of my own progesterone?

Is anyone else intolerant of their own progesterone?

I have an appointment with a gynaecologist on 22 November so will be doing plenty of research before hand and will be going in with a list of questions!

Thanks in advance for any advice.

Sally
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Hurdity

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Re: Progesterone Intolerance
« Reply #1 on: November 10, 2016, 12:55:54 PM »

Hi sallyfff

 :welcomemm: and so sorry your post got missed - it was in the wrong section and got moved yesterday but then ended up in the date in which it was posted so no-one saw it! I hope you haven't written us off as unhelpful!!!

Sorry to hear about your prog intolerance - there are several women on here with the same. Some are intolerant of their own progesterone ( would suffer pms for the whole of the second half of their cycle), some who are intolerant of synthetic progestogens - found in most HRT and the pill, and some who are also intolerant of added progesterone even though it is bio-identical ie the same as produced in our bodies. Yet other (actually probably most women) are sensitive to the fall in progesterone - the progesterone withdrawal symptoms. So - we are a mixed bunch.

When you say you are pretty sure you are peri-menopausal - what have your periods been doing in the past year or so, and what is your cycle length? Have you started skipping periods? Maybe you don't know because of the Mirena - so did you start to get flushes or have you had periods since coming off the Mirena. Hope you don't mind all the questions but it's difficult to help otherwise.

Utrogestan is also often better tolerated when used vaginally as very little gets into the body.  Personally I would explore this avenue before opting for a hysterectomy - which is quite drastic I agree. Some women opt for a longer cycle ( usually only advised if post-menopausal) so that they can take progesterone less often. Others take it for fewer days in the month under gynae supervision ( as a scan would be needed to check it is keeping the lining thin).

If you keep your ovaries then yes you will still ovulate and produce your own progesterone but you would be able to take a high and constant dose of oestrogen which would help with the mood swings.

Hope this helps and hopefully someone else will be along with their experiences now your posts is visible - and hope you haven't given up looking for a reply and come on the forum to see this!!!

Hurdity x
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Maryjane

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Re: Progesterone Intolerance
« Reply #2 on: November 10, 2016, 03:42:12 PM »

Hi , Hurdity has loads more knowledge than me .

However , I am progesterone intolerant. I only take it 7 days a month , vaginally is definitely worth trying out . I can't as I have vaginal atrophy/ bladder issues which the utrogestin irritates.

I will need a yearly scan which is due nowish.

I have a hysterectomy on the back burner also , as I will need HRT for life, but a hysterectomy does not come without potential problems either , regards prolapses/ vaginal vault prolapse amongst other things.
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sallyfff

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Re: Progesterone Intolerance
« Reply #3 on: November 10, 2016, 03:45:32 PM »

Hi Hurdity

Yes, I was rather licking my wounds and sniffing!  No, not really, but I was puzzled and thought I'd probably done something wrong.

It was my GP - a great find, she's very knowledgeable and has been through the menopause - who suggested Utrogestan as that's what she used.  She said I am peri-menopausal after I was prescribed Noristhisterone to delay my period before I went on holiday in the summer.  It made me feel brilliant!  So, thinking I needed progesterone, I started taking the mini-pill (prescribed by a different GP).  It turns out I don't need progesterone and the reason I felt so good on the Noristhisterone is because it converts into estrogen or something (no, I don't understand either).  I have always suffered with PMT for about 2 weeks per month from ovulation to bleeding.  I don't have the Mirena in any more - thats what started the whole progesterone intolerance journey.  It brought me out in an itchy rash.  When I tried the Utrogestan it was vaginally.  My GP said that some women do it every three months, but like you said, this is for post-menopausal women.  She also said that in the US some women don't take any progesterone but have yearly scans of their womb for any pre-cancer signs.  My cycle is shortening (17 days this month) and has been for a while.  I think I'll be like my mum (deceased) and go down the constant bleeding route.  She also had a hysterectomy at my age.  I wish I could ask her! 

I have an appointment with a gynaecologist consultant on 22 November.  I've also stopped the Zumenon and switched to Evorel 50 as they were giving me headaches and making me feel slightly nauseous. Oh, it's all very complicated isn't it?  I've also been looking into Testosterone (zero labido) but my GP doesn't want to prescribe it until I see the consultant.

Thank you in advance Hurdity.  I've read a lot of your comments on other posts about Utrogestan, and have found them very interesting and I really hoped this would be my solution but the rash came around my pelvic area and, like I said before, made me feel dreadful.  Really dreadful.  I now get the rash, although mildly, from my own progesterone!  I'm falling apart!!

Sally

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sallyfff

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Re: Progesterone Intolerance
« Reply #4 on: November 10, 2016, 03:48:14 PM »

MaryJane

Hello and thank you for your reply.  I had high-hopes for the Utrogestan, but sadly it made me feel soooo awful I had to stop.  My husband is lucky to be alive.  I will talk to the consultant about having scans of my womb.  How often do you have them and did they offer this solution without a fuss?

Sally
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Maryjane

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Re: Progesterone Intolerance
« Reply #5 on: November 10, 2016, 04:00:48 PM »

Those that can tolerate it vaginally , don't get the side effects in the same way as taking it orally.

I go private. Have a good chat with your GP , it's cheaper to have a yearly scan than a hysterectomy.
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Mary G

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Re: Progesterone Intolerance
« Reply #6 on: November 10, 2016, 08:00:10 PM »

Sally, welcome to MM and sorry I missed your post.

I am not intolerant to my own progesterone at all but severely intolerant to all forms of synthetic progesterone and to high doses of Utrogestan.  This only happened once I become menopausal and stopped producing adequate amounts of my own hormones.  I didn't have any problems with periods or PMS pre-menopause. I had a Mirena coil (first one fitted in 1998) pre-menopause and managed OK with it but as soon as my hormone levels dropped and I became menopausal (2004), I started getting migraines.

I am now in the last chance saloon and currently use 2 pumps of Oestrogel everyday, a small bead of testosterone everyday, 25mg DHEA and 7 x 100mg Utrogestan vaginally every 5 weeks or so and sometimes I take less than that if I feel rough.  The only real side effects I have with artificial forms of progesterone (synthetic and micronised) are silent migraines which consists of visual disturbance for about 25 minutes without the ensuing headache.  I have uterine scans at least once a year but one whiff of a problem will mean I have to have a hysterectomy. 

With the benefit of hindsight, I wish I had gone for a hysterectomy years ago when I was younger and probably better placed to get over a major operation - I am 55 now.  Obviously I don't need a womb and don't have a problem with the idea in principle but I can't face the operation at the moment because we have too much and I have to be fit enough for heavy manual work. 

My advice would be to try 100mg Utrogestan vaginally for 7 days each month and have regular scans.  You might find this is just about tolerable.  I was prescribed this regime/dose of Utrogestan by Professor Studd so you might find it helpful to look at his website, he talks a lot about progesterone intolerance. 

Don't be too scared off by my story, it is a extreme case and most women don't have anything like that level of intolerance. 

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Dawncam

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Re: Progesterone Intolerance
« Reply #7 on: November 10, 2016, 10:09:46 PM »

Hi Sallyfff - I do feel for you. Like you I'm completely intolerant to any kind of P - mine, made in a lab, a horses, early cycle, mid cycle, any bloody part of the cycle! It's taken me a long time (I'm 54) and a lot of black days/weeks to understand what it is, but I know now and I entirely empathise with you. My mum is also deceased so I can't ask her. No matter, this is our life and our hormones so we just have to deal with it.

I'm further down the Meno journey than you, prob 4 years post and, having tried almost everything, I'm going back to Mirena. I had one very early on, around 3/4 years ago, but had post sex bleeding due to its position so had it removed. I'm putting great faith in the next one as it's the end of the line -apart from Tibolone. I know you're not post M but you're well into your journey and your consultant may agree to Tibolone given your circumstances. It also had testosterone properties which would help with libido. I know some women swear by it!

The only other possibility is the new IUD Jaydess which contains much smaller amounts of P. It's actually a contraceptive device but can be used if you're on a low dose E - worth investigating?

Hope this helps.

Good luck hon.

Dx
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Hurdity

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Re: Progesterone Intolerance
« Reply #8 on: November 11, 2016, 10:47:23 AM »

Hi again sallyfff

Thanks for giving more information. Sounds quite tricky! The fact that your cycle is shortening - is indicative of the "Late Reproductive Stage" as it is officially known - your ovaries are still working, but in their last stage before peri-menopause starts (defined as when cycles start to get erratic and vary by more than a week each time - and usually get longer sometimes). During this stage (the Late Rep Stage) hormones do start to go awry and give rise to much more extreme pms symptoms and mood swings, and in some women the more extreme hormonal surges and specifically the oestrogen crashes - lead to flushes and sweats even while periods are regular. By contrast many of us didn't start getting flushes until periods had been skipped for some time ie longish gaps between them as in my case.

The good news is if you are still ovulating and producing your own progesterone, and if you are also adding oestrogen then some gynaes seem to be much happier with giving lower doses of progesterone than you would need if just taking HRT in late-peri or post-meno.

It's good you are being referred to a specialist as the 7 day regime could be something you could explore with him/her, but as it is less than the licensed amount then they should as a matter of course offer an annual scan of the uterus. This shouldn't be a problem as you have been referred for extreme progesterone intolerance.

Anyway all the best with your consultation and do let us know how you get on :)

Hurdity x
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sallyfff

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Re: Progesterone Intolerance
« Reply #9 on: November 11, 2016, 12:30:11 PM »

Goodness!  Thank you all so much.  I shall do some research on on some of the things mentioned - I want to say Toblerone - may be a bar a day would help!  I'll keep you posted.

Sally
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Dawncam

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Re: Progesterone Intolerance
« Reply #10 on: November 11, 2016, 12:34:23 PM »

Good luck hon.

Dxx
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