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Author Topic: Progesterone intolerant but Mirena coil suggested  (Read 7023 times)

becca

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Progesterone intolerant but Mirena coil suggested
« on: February 07, 2018, 02:34:49 PM »

Hi all,
so hoping for some advice - a few months backed my dose of utrogestan was increased to 200mg for 12 days per month.  The emotional and physical symptoms were pretty bad - at one point I found myself calming thinking about suicide, on other days I had uncontrollable rages or would cry ALL day, not sleeping, constipated for 10days or so each month - so I reduced the dose. Feel much better now!  The clinic I'm now attending now seems to accept that I'm progesterone intolerant but the concern is that I have irregular bleeding and have never had the usual withdrawl bleed.  I'm trying vaginal delivery of the utrogestan to see how that goes but they are suggesting that I get a Mirena coil to keep the lining uterine thin.  Would be grateful to hear from any one who has thoughts/info on the following questions:
(1) What blood tests can I have done to check whether or not I'm absorbing enough progesterone with vaginal application?  My GP doesn't know what to test and the clinic won't test as 'they only go by symptoms'
(2) Since I'm progesterone intolerant surely a Mirena coil is a really BAD idea????  Have any other prog intolerant women have success with this?
Grateful for any advice or experiences to help me decide what to do next
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Optimist

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #1 on: February 07, 2018, 08:27:20 PM »

Hi Becca
I have trialled several HRTs now and all seem to go wrong with progesterone. I finally relented and have had the Mirena coil fitted (about 1 week ago). So early days yet and I'm also using oestrogel.
You could ask if the clinic would recommend the Jaydess coil which is half the progesterone in the Mirena and may grva better option for you. Another lady on here was having this fitted a few weeks back bug I've not heard how she is getting on.
I can't say it's fantastic at present because I'm experiencing some joint pain and urine output has increased massively but so far none of the other side effects like insomnia, in fact sleeping really well... long may it last 🤞🏼 I have today used 4 pumps of oestrogel to see if this will overide these side effects as I felt like a very old lady trying to get out of bed this morning. I'm hoping eventually I will be able to use less gel but it's very early days yet. I'm going to be posting later to ask re this.
Sorry I can't answer re blood tests and I'm sure some other ladies will be along soon to answer your questions.
Good luck to you and welcome to the forum 👋🏻 You've come to the right place xx
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Mary G

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #2 on: February 07, 2018, 08:37:23 PM »

becca, I am severely progesterone intolerant so I know how you feel and I really do sympathise.  I am not intolerant of my own progesterone, just the ones used in all HRT preparations.

First of all, you need to have a uterine scan to find out if your womb lining has been clearing properly -  your GP/clinic should know this.  Once that has been established, you then need to find a way of using oestrogen with the barest minimum amount of progesterone.  You can either take the low dose vaginal Utrogestan or risk having a coil but I would recommend you try the Jaydess which has a lower dose of progesterone.  If you are progesterone intolerant, you should be able to swing it.

If you are progesterone intolerant then 200mg of Utrogestan for 12 days is a complete no-no.  Using Utrogestan vaginally means you can get good results with about half that dose but in your case I would do the 100mg Utrogestan for 7 days as in the Professor Studd regime - have a look at his website.  This is enough for most women but obviously there will be some who need more and you could be one of them so it would be best to have a scan as soon as possible.

I am currently thinking of having an uterine ablation and doing a very long 3 month cycle to make the progesterone phase more bearable but you might want to explore other avenues first. 

What type of oestrogen are you using?
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Hurdity

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #3 on: February 07, 2018, 08:38:16 PM »

Hi becca - you wouldn't have blood tests re the progesterone because anyway the most important thing is that when used vaginally, most of the progesterone gets to the uterus where it is needed before entering the blood stream. There is limited research which suggests that on average you might be able to use half the amount of prog vaginally compared to orally but the duration is also important - it seems that 10 days in a minimum and ideally 12-14 days per month to reduce risk of endometrial hyperplasia (which can lead to cancer). However the amount is also realted to oestrogen dose - the more oestrogen the more the womb lining is stimulated therefore the more prog needed to shed it (or keep it thin if used on continuois combined basis).

Maybe your cycle is still overriding the HRT hence the lack of predicatable withdrawal bleed.

The prog in Mirena is absorbed systemically and I did a rough calculation a while back and thought it was very approx of the same order as a Femseven patch - on average - can't remember if I thought this was initially or after a year or so - because the amount of prog released from the coil diminishes year by year ( and slowly month by month).

How prog intolerant are you? Although utrogestan is bio-identcial - we have to ingest such large amounts so that it is much more than we normally need and it is the metabolites (after going through liver) which seem to cause the worst side effects. You may well be fine with small doses of syntehtic ones.

Good idea of Optimist perhaps to think about Jaydess if you can find someone to prescribe it, now that it is beginning to be used off licence for HRT?

The only way to tell if you are having enough prog is to have a uterine scan every now and again

Hurdity x
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becca

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #4 on: February 08, 2018, 09:16:37 AM »


Maybe your cycle is still overriding the HRT hence the lack of predicatable withdrawal bleed.

How prog intolerant are you? Although utrogestan is bio-identcial - we have to ingest such large amounts so that it is much more than we normally need and it is the metabolites (after going through liver) which seem to cause the worst side effects. You may well be fine with small doses of syntehtic ones.

Good idea of Optimist perhaps to think about Jaydess if you can find someone to prescribe it, now that it is beginning to be used off licence for HRT?

The only way to tell if you are having enough prog is to have a uterine scan every now and again

Hurdity x
[quote author=Mary G link=topic=38816.msg614884#msg614884 date=1518035843
Thanks Hurdity, Mary G and Optimist - really appreciate your advice.  I paid for an ultrasound scan after the second month of 200mg utrogestan as I was worried about not having a bleed.  Radiographer said lining of womb was 3mm, no sign of any folicles left in the ovaries and "no cancer".   In terms of intolerance I started on the studd regieme on 100mg for 7days and it was ok in terms of emotional symptoms but no bleed and womb lining got up to 5mm which my clinic says is the point at which they would investigate.  Initially increased dose to 100mg for 12 days and I seem to be sort of ok on this emotionally - it's not perfect but MUCH preferable to the hell of 200mg per day.

I said to the nurse at the clinic that I thought it might be my own cycle over riding the utrogestan and she said that wasn't possible!! 
I am using oestrogel Optimist - I was fine on two pumps per day for about a year but then had to increase it to three pumps a few months ago as my symptoms were returning.  Amount of oestrogen and/or utrogestan seems to have no effect on whether or not I have a bleed - I've had three random bleeds in 2 years - two on the lower dose of oestro and one on the higher - none of them in line with the timing of a withdrawal bleed.

I've started on the vaginal route for the utrogestan a few days ago - I know lots of women on here have said there is a lot of discharge with this but I haven't had any so far.  Hurdity if I keep on this but still no bleed - how frequently should I pay for a scan?  every three months?  and is it best to have the scan just after you've finished the utrogestan?
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Mary G

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #5 on: February 08, 2018, 11:57:19 AM »

becca, a womb lining measurement of 5mm is not worryingly thick for a woman on cyclical HRT, that figure is for women who are post menopause and not on HRT or perhaps women on combined HRT, surely your clinic should know this.   When in your cycle did you have that particular scan?   Normally a woman on cyclical HRT will go much higher than 5mm otherwise where does all that blood come from!

I take a super low dose of Utrogestan every 5-6 weeks and luckily that is enough for me but I have several uterine scans a year with my gynaecologist who does the scans herself so she can see what is going on first hand and I can ask relevant questions.  In my case it's either that or an immediate hysterectomy, I don't have a choice, but I think most women have one scan every year.
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becca

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #6 on: February 08, 2018, 01:08:56 PM »

becca, a womb lining measurement of 5mm is not worryingly thick for a woman on cyclical HRT, that figure is for women who are post menopause and not on HRT or perhaps women on combined HRT, surely your clinic should know this.   When in your cycle did you have that particular scan?   Normally a woman on cyclical HRT will go much higher than 5mm otherwise where does all that blood come from!

Mary G I had the scan a few days after finishing 12 days of 200mg utrogestan.  Then randomly a couple of weeks later in the middle of taking my next lot of utrogestan (back down to 100mg per day), when in theory the lining should have been thinning again, an incredibly heavy bleed.  It's a bit of a mystery.  I'm seeing a clinical nurse specialist at a meno clinic who is very supportive and knowledgeable but would prefer to get referred up from there to a gynae.  Perhaps my body's refusal to respond as it's supposed to will help me get that  ;D
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Hurdity

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #7 on: February 09, 2018, 07:29:04 PM »


Maybe your cycle is still overriding the HRT hence the lack of predicatable withdrawal bleed.

How prog intolerant are you? Although utrogestan is bio-identcial - we have to ingest such large amounts so that it is much more than we normally need and it is the metabolites (after going through liver) which seem to cause the worst side effects. You may well be fine with small doses of syntehtic ones.

Good idea of Optimist perhaps to think about Jaydess if you can find someone to prescribe it, now that it is beginning to be used off licence for HRT?

The only way to tell if you are having enough prog is to have a uterine scan every now and again

Hurdity x
[quote author=Mary G link=topic=38816.msg614884#msg614884 date=1518035843
Thanks Hurdity, Mary G and Optimist - really appreciate your advice.  I paid for an ultrasound scan after the second month of 200mg utrogestan as I was worried about not having a bleed.  Radiographer said lining of womb was 3mm, no sign of any folicles left in the ovaries and "no cancer".   In terms of intolerance I started on the studd regieme on 100mg for 7days and it was ok in terms of emotional symptoms but no bleed and womb lining got up to 5mm which my clinic says is the point at which they would investigate.  Initially increased dose to 100mg for 12 days and I seem to be sort of ok on this emotionally - it's not perfect but MUCH preferable to the hell of 200mg per day.

I said to the nurse at the clinic that I thought it might be my own cycle over riding the utrogestan and she said that wasn't possible!! 
I am using oestrogel Optimist - I was fine on two pumps per day for about a year but then had to increase it to three pumps a few months ago as my symptoms were returning.  Amount of oestrogen and/or utrogestan seems to have no effect on whether or not I have a bleed - I've had three random bleeds in 2 years - two on the lower dose of oestro and one on the higher - none of them in line with the timing of a withdrawal bleed.

I've started on the vaginal route for the utrogestan a few days ago - I know lots of women on here have said there is a lot of discharge with this but I haven't had any so far.  Hurdity if I keep on this but still no bleed - how frequently should I pay for a scan?  every three months?  and is it best to have the scan just after you've finished the utrogestan?

You really don't need a scan if you have had no bleed and are taking the licensed amounty of prog cyclically especially vaginally - rest assured that if your lining gets too thick it will eventually bleed spontaneously - but this is counted as abnormal bleeding. 

That comment about the 5 mm needing investigation when you are on cyclical hRT is rubbish and really the professionals should understand what happens to the uterus lining during the course of a cycle. The same thing happened to me - I had some post-sex bleeding so was sent for investigation. My lining was something like 7.4 mm but I was in the middle of the oestrogen part of my cycle - no amount of my telling them that this should be expected and not abnnormal, prevented their sending me for a hysterosocpy (although they did see an abnormality on the U/S scan - which turned out to be small fibroid!).

YOur nurse knows nothing either - of course the prog can override the cycle - otherwise everyone could use HRT as contraception if it always prevented ovulation.

In answer to your question about frequency of scans - I would have thought annually would be sufficient - but if you are peri-menopausal then it is more tricky since the point at which you have a scan is crucial. For regularly menstruating women and post-menopausal women on cyclical HRT - the scan should be done immediately following the bleed because this is when the lining is at its thinnest ie after it has been shed. For post-meno women on conti HRT - scan can be done at any time - but obviously straight away if abnormal bleeding occurs. Also in your case any time you are worried go to the doc - but you shouldn't have to pay for scan if due to abnormal bleeding.

Also to clarify your point re the lining thinning when on utrogestan - this is not the case. During cyclical HRT or natural menstrual cycle, the lining builds all the time on oestrogen only. When you take the prog this changes the lining to become more structural - ready for baby - and it can become thicker over this time. If the prog level drops then if the lining has built up sufficiently and you have taken prog for the right length of time  - it will then shed and as I pointed out once shed it will be at its thinnest.

When you take continuous combined HRT during post-menopause the prog actually interferes with the oestrogen receptors to prevent the lining from thickening under the influcence of oestrogen - so this is when it starts to thin if the balance between the two hormones is right - but during the initial few months there can be sporadic bleeding until it gradually settles.

I don't get a discharge - just some white stuff in loo if I go in the night or first wee of the morning - I presume it's just the residue coming out.

Sorry this is a bit of a ramble and hope I've explained clearly enough!

Hurdity x
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becca

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #8 on: February 09, 2018, 10:21:28 PM »

Thanks Hurdity - I think I understand it a bit better now. 
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rae123

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #9 on: February 17, 2018, 01:12:42 PM »

Hi Becca,

I've just posted about the same, I have the same reaction a you to Utrogesten & it's not fun!

I found even using it vaginally gave similar symptoms, maybe not quite so bad and on the blood tests I had 'quite high' levels of progesterone, so it was being absorbed.

Hurdity is right, your own cycle can definitely override Utrogestan.

I've had Jaydess for just over 4 weeks and have horrible symptoms, wish I had never had it. On the other hand there are people who have tried Jaydess/ Mirena & it's solved the problem so it's a decision I guess you have to take- whether to take a punt on it or not- you can always get it taken out.
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dangermouse

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #10 on: February 17, 2018, 03:49:17 PM »

The doctor may have meant that the utrogestan was overriding your own progesterone. By taking high doses (as with oestrogen) your own output will decrease. This may even be part of the root of progesterone intolerance.

If you can get the lowest dose of progesterone that keeps your lining thinned then this will be your sweet spot, although I'm not sure how much flexibility the dosing allows.
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Denise Didi

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #11 on: May 18, 2019, 10:53:59 AM »

Hi hoping you will update us on your progress..has it worked...so unsure about getting the coil..if it makes you worse how quick can it be taken out?
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MicheleMaBelle

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Re: Progesterone intolerant but Mirena coil suggested
« Reply #12 on: May 19, 2019, 09:11:41 AM »

Not sure if this would suit you, although the Jaydess might be better than the Mirena as it contains less progesterone. You'd also need to have regular scans.

The progesterone is a synthetic one so again not sure how you'd cope with this. You'd need to arrange to get it removed if it doesn't suit you. Not sure how quickly this would happen?

I'm not convinced that a coil is a good idea given your sensitivity to progesterone. Perhaps you need to explore taking  less Utrogestan under strict medical supervision ( I take 10 days and I'm at my limits by day 7-8 ) and backed up with an annual scan. Don't self prescribe though. Only do this with the support of your doctors. X
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