Severe progesterone intolerance

[Touty]

Anyone else out there with this? How do you manage to ease symptoms of menopause?

im on a very low dose combined tablet for hrt, still struggling to cope with mental distress, flatness and terrible feelings of doom. Even at the low dose of hrt I’m struggling with progesterone intolerance.

Ah...it's always very hard to comment when hrt is being prescribed outside of the UK. Different countries have different types, some aren't available etc etc, and guidance is very different.

There may be some estrogen only pills but not as combined continuous.

No, it won't be because you are progesterone intolerant because some tablets have a higher ratio of estrogen to less progestogen than yours.

Anyone know if Norethisterone is available separately as a tablet to take with gel/ patches? (for the Utrogestan intolerant)

Would this be better/ safer than a tablet containing Estrogen/ Norethisterone?

What I don't understand is why there is the same level of Norethisterone in both 1mg and 2mg versions of sequential HRT like Novofem?

Surely 2mg of estrogen requires more to offset it?

I have been offered a hysterectomy due to progesterone intolerance too nervous to go ahead as feel it's not a good enough reason but cannot survive without a high ish dose of Estrogen - no idea what to do tbh

In the UK? I'd be very surprised if so. I don't believe a surgeon would perfom major surgery for this reason. Please reconsider, there must be a form of progesterone you can try. The mirena?

I also could not tolerate utrogestan. Complete hell. Now on a half dose, so 12 days of one tablet vaginally. GP has not mentioned monitoring lining - do you think I should ask?

Yes I'm in the UK
I've tried the Mirena twice and both times I've reacted badly to it. Also tried Cyclogest & Utrogeston not tried synthetic ones (was trying safer options first) like provera or combined patch think combined patch only allows 50 mg Estrogen & I need a higher dose than that. I was suprised by my gyna offering a hysterectomy also Newsons private Clinic suggested it too

For those in peri who cannot tolerate progesterone well - have you tried three-monthly cyclical regimen where oestrogen is taken daily and progestogen is given for 14 days every 13 weeks?
It is considered more suitable for women with infrequent periods or who are intolerant to progestogens

I used Utrogeston for 10 days a month sometimes skipping an odd month when symptoms with it were unbearable but my lining thickened as obviously not enough progesterone so I didnt dare do a 3mth break also as soon as my lining thickened they took my estrogen away was 7wks of hell literally without now after going bk private again I'm trying Cyclogest but already have hives everywhere so looks like I cant tolerate this either but I'm not sure how people manage in a 3mth progesterone as my lining thickened when I tried a 2 month routine even though my periods were still regular

I have the mirena (+ oestrogen patch)

I could not tolerate the progesterone-only pill as contraception several years ago. I just stared at the kitchen table for 2 months. So I was very wary of the mirena and fought it for ages.

Anyway I have now had it for 9 months with no issues, along with the patch.

Well, I’ve changed my hrt - my mental health took a real turn for the worst, antidepressant not working. I’ve started taking the oestrogen gel 2 pumps with 200 mg of cyclogest daily as I’m post menopause, I’m taking the cyclogest vaginally so, I am halfway through the packet and I’m feeling much better! I’m just praying 🙏 that this means I have found a progesterone that I can tolerate. I’m scared of writing this in case I have an emotional breakdown in a few days which is what normally happens after I take progesterone for a few weeks.

Im also wondering if im taking enough of the cyclogest 🤔 200mg per day continuous, anyone know?

but I'm not sure how people manage in a 3mth progesterone as my lining thickened when I tried a 2 month routine even though my periods were still regular

@ja66 Not sure if you are still reading, and hope you have got something sorted, but a query over what you said here.

How did you know your lining had thickened? You must have had a scan, so what was the reason for the scan?

If anyone is using HRT the lining should be measured immediately after a withdrawal bleed, to assess the lining. If it's scanned at any other point, (especially after several weeks of estrogen-only) it will be thick(er).
But that's not a reason to withdraw your HRT, unless the lining is very thick all of the time, even after a bleed.

@Legacy Yes, it is. I used it for years with gel before changing to Utrogestan. But your 'average' GP may not be confident in prescribing the right amount unless they are trained in HRT or take advice from someone who is.

@JinglingSpringbells If I remember correctly my scan was done on joining the NHS menapause specialist that I'd waited years for. They were very against the high Estrogen (150) I was on from Newsons private clinic additionally not happy that I was taking Utrogeston vaginally and I admitted I wasnt taking it every month as it makes me completely wired & I get no sleep on it. The scan showed a thickness of 7 (they like it up to 4) was done randomly not patterned around my period. They arranged for an immediate coil fitting even though I'd previously had one with bad side effects. I felt I had no choice unless I wanted cancer! I persevered for 4 months had solid bleeding, wired feeling & no sleep & eventually removed it myself as I just couldnt cope. That's when my HRT was took off me as they offered me no alternative progesterone.
It's still an issue for me as after 7 awlful wks I returned to Newsons privately without NHS specialist knowledge as I couldnt get another appointment with them, which financially is tough for me & I purchased Cyclogest as an alternative to try and am using my surplus estrogen patches. Not getting on great with Cyclogest currently on my 2wk break with no period which worries me plus eventually I'll tun out of estrogen patches & I'm dreading restarting Cyclogest after my break.
I have a follow up scan mid March NHS previously arranged so I'm hoping to find out more then. It is a real struggle to so need the Estrogen but not cope with Progesterone plus the differences in opinions from specialists is frustrating I think NHS & GP want me on antidepressants not HRT but I have Osteopina already suffered unexplained fractures so need the bone protection apart from the other severe symptoms I get without Estrogen. It's really sickening tbh & I generally feel just 2 tired to battle for support

@ja66 That is an appalling experience. How on earth can they not know that the limit for women on HRT is not the same as for post menopausal women. Complete ignorance of something so basic? The 'limit' of 4mm is for post-menopausal women, not using HRT, and some experts say up to 5mm.

You have been treated very badly.

My own experience (many scans, privately) is that women on HRT can have normal lining thickness up to 10mm during the cycle. That's why a scan is best done immediately after a withdrawal bleed. And it's not just the thickness that counts (so they have discussed with me) but how the lining looks.

TBH if you can avoid going back to the NHS it might be best if this is how they are treating you. OR you can discuss this with them. You don't have to 'do what they tell you' and forcing you to have a coil was a disgrace.

You are on a very high dose of estrogen and TBH it may be better if you can reduce that.
The BMS has recently cautioned against that- any dose over the 100mcg patch.

NICE has issued new menopause guidance in Sept 22 and it states that women post meno can use 3-monthly cycles if they are progesterone-intolerant.

All you need do is try to use the right amount of progesterone for the level of estrogen. For that amount of estrogen, the BMS would be suggesting 300mgs progesterone on sequential regimes, or 200 on continuous.

Thank you that is all very interesting!

NHS specialist is pushing me for a hysterectomy but I feel its 2 drastic when I haven't tried all progesterone options I feel they dont really know about other progesterone options so this is an easier option 4 them

Hi all, I also have the progesterone intolerance.
I am on Utrogestan, taking it for half the month. Had started using it vaginally after reading that may help

The first few months I was ok with it, I felt really tired and like I had a hangover but can cope with that.

However, subsequently I started getting terrible migraines and light sensitivity...and extremely low mood, I felt like I may try to take my own life, but for no particular reason. I just felt everything was pointless.

Every time this happened I immediately stopped the progesterone and i felt fine within 48 hours. Then my period would come early, as I'd effectively shortened my cycle.

Last month I cut the dose to 1 pill instead of 2 and that really helped.

I'm worried that I could get cancer if I do t take enough of it? Also if I keep needing to stop it early as the symptoms are just too terrible.

I can't really afford a private consultation and my GP is worse than useless, took months to get them to prescribe Estrogel and utrogestan as the argued that it didn't exist and that I had to have patches.

I found this info on the Louise Newson website. Seems to say it's ok to take only one utrogestan? But I guess that would be backed up by scans which I won't be able to access

Newsons prescribed me 1 tablet vaginally

The Newson advice is based on limited evidence apparently so the BMS advise full doses, however some women on low to medium oestrogen doses do <anecdotally> take it alternate days if vaginal. I do know of women who have had surveillance scans on the nhs for this very reason, even without bleeding etc just purely to check the endometrium. Obviously it'll be a postcode lottery like everything seems to be hrt related. But worth asking your GP for an annual scan.

If not private scans are £200/£300 i believe. You won't need a full consult just pay for the scan if you have concerns and if you don't get anywhere with your GP but it is a valid reason to have a scan on the nhs to check for adequate protection. Good luck.

*alternate days if continous, 1 tablet if sequential. As I said only based on limited evidence.

The BMS has overridden this suggestion and said very clearly that women must use the full amount unless agreed with their Dr first.

The trouble with thinking the NHS will do scans as routine monitoring is twofold.

The first is that the protocol doesn't exist (I know your friend has had it @Janiie but I know of no one else, only women with spotting.)

The second is that a GP would have had to agree to a lower, unlicensed dose which puts them in a very tricky position, ethically. They would need to justify going off-licence. Usually, any variation is done on the advice of a consultant as they are taking responsibility.

You can pay for a private scan BUT most reputable scanning clinics do want a referral from another dr. This is so they can send the scan results to them (as well as discuss it with the woman at the time.) You can't just walk in off the street, unless it's to a pregnancy type scanning service. I'd not recommend those as the people doing the scans are not doctors they are simply trained in carrying out simple scans, not looking for endometrial irregularities and making a judgment on what may or may not be a serious issue.

I think I’ve been progesterone intolerant for years, pre HRT. All really weird.
I get flu symptoms on it and an entire restless body (like legs but everywhere). Hadn’t made the link till recently after going off and on utrogestan. Chronic UTI (now almost three years) also started two months after I went on HRT.
However I love oestrogen - my hot flushes could sink a ship - and am seeing a GP at Newson to work out the minimum P I need to take to keep the O going. Just started testosterone with them too which is amazing.