Progesterone intolerance, what worked for you?

[abouttoturn50]

I'm 49, I have tried HRT twice, the oestrogen part made me feel great but I'm having issues with the progesterone side. Firstly I tried Evorel Sequi which was great until the progesterone part which made me feel anxious and my mood was very low so I had the coil fitted and that was horrendous, the anxiety and dark thoughts were unbearable, I had it removed after only 2 weeks as I was going into a very dark place! I've gone through a cycle with no HRT, I'm 4 days before my period and I feel shit! Headaches, fuzzy head, fatigue and apathetic so I'm pretty sure I do need HRT! Should I have maybe tried longer on the Sequi? Just looking for suggestions before I speak to my GP really. Both times I was just told to stop rather than being given an alternative.

Yes tibolone is really good for some women, glad it is helping.

Look at my post with this guidance https://thebms.org.uk/wp-content/uploads/2024/04/01-BMS-GUIDELINE-Management-of-unscheduled-bleeding-HRT-APRIL2024-F.pdf - if whoever is prescribing that regime hasn't told you, in detail, about the increased risks of endometrial cancer, then it's time to ask why. @BlackStrayCat

I take the progesterone vaginally.

I am all good, but thanks x

@notanotherrokabag You've produced a document which gives some stats. But it's got to be looked at in the light of women with progesterone intolerance.
And individual treatment. Weighing up all the issues like mental health, use of HRT, and risks.

BMS guidance does not 'trump' NICE prescribing guidance.

I don't have time now to go through all of your points here but what I would say is that you're coming at this I assume as a 'bystander' rather than someone using the regimen under supervision.

In practice, any woman with unscheduled bleeding on a longer cycle would have a scan. And hyperplasia is not cancer. It's a thick(er) lining. There are 4 types of hyperplasia and only one is cancer.

This is why if any odd bleeding is investigated and action taken, it's controlled.

Do you think that specialists don't know all of this and make a judgement on each woman at the time?

The risks and incidence of hyperplasia and cancer are actually far higher in women who are a) overweight and b) don't use HRT.

@ZippyDenimBear this is sounding like a possibility worth trying, is that monthly or 3 monthly?

I know that there are a lot of specialists around who have very fixed views and don't practice evidence medicine. Do what you feel is right - as long as you're making an informed decision.

Personally, if I had such bad progesterone intolerance that I felt I couldn't take it more than for a couple of weeks every three months, I'd probably have a hysterectomy. As at least one high-profile private menopause doctor has done.

good luck with it

I understand the benefit comes from it not being absorbed through the stomach lining

I take 1x 100mg vaginally daily & continuously (no break)

@notanotherrokabag I'm curious why you joined this thread - perhaps as a non-HRT user anyway?

Your comment about some specialists having 'fixed views' and who don't practice evidence-based medicine comes over as if they don't know what they're doing, and are blinkered, although I'm sure you didn't mean that. You don't genuinely believe that specialists are unaware of the slight risk of hyperplasia? And that the symptoms - irregular bleeds - aren't fast-tracked for investigation? And that hyperplasia if it happens is usually easily reversed?

We don't hear much about women who are overweight and are at a far greater risk of hyperplasia and endometrial cancer.

The risks were clearly explained right at the start as part of a list of 'pros and cons' when I began HRT.

NICE give it as an option ( not just drs with fixed, non-evidence based ideas.)
There is a 3-monthly cycle tablet form of HRT (Tridestra).

This is the link to the NICE prescribing guidance. see REGIMEN where the 3-monthly option is listed for women both in peri and post menopause.

https://cks.nice.org.uk/topics/menopause/prescribing-information/hormone-replacement-therapy-hrt/

If you were referring to Dr Newson I wasn't aware that she'd shared why she'd had a hysterectomy, although yes, she does say she has.

I doubt the option of a hysterectomy on demand exists. It's a major op with risks both short and longer term. No dr is going to offer that unless as a last resort and certainly not on the NHS.

I joined.so those of your tricycling progestogen can do so in an informed way as it doesn't seem that any of your doctors have told you of the risks.

Well, you can exclude me from your assumption.
Thanks!

and me!

Thank you so much for the advice from those who have had similar experiences with progesterone. I think I'm going to ask for Utrogestan to use vaginally and see how that goes. I'm desperate to be on HRT because the difference see with the oestrogen is amazing!

Sorry my thread seems to have caused some issues 🙈

I didn't get on well with norethisterone at all (many sleepless nights) but medroxyprogesterone acetate (Provera) is fine. I am in Scotland where, for some reason (not cost acc to my nurse), we aren't even offered utrogestan unless every other progesterone option has been tried. 🤦🏻‍♀️

No problem.

Good luck.

Just so you know the history here of vaginal use.

When I first used Utrogestan, my consultant told me that especially in France (and throughout Europe) women tend to use it vaginally.

It bypasses the digestive system that way and doesn't affect the nervous system (ie mood and sedation.)

However, using it this way in the UK is off-label.
Some GPs may not have heard about it (although it's becoming more common.)

You may come up against some 'opposition' as it is off-label, but most women just do it anyway if that happens.

You have wished me good luck twice on this thread.

I do not need good luck.

Thank you.

Actually I think that anyone taking progesterone 2w every 3m and ot having regular scans does need good luck, because they're not getting evidence based medical care. So I wish you well and hope you're one of the lucky ones not harmed by it.

@notanotherrokabag I know you're trying to help. The thing is, you (and I) don't know exactly what conversations have been had between posters using long cycle HRT and their drs. eg Have they been advised to report odd bleeding asap?

The new report from the BMS is certainly very forceful. my own view is that it's perhaps there to contain the use of off-label very high estrogen doses that some women have been given.

Looking at it more positively, the report does stress that endo cancer on HRT is rare and less than women not using HRT who report odd bleeding (post menopause.)

One encouraging fact they now include is that they allow an endo thickness of 7mm on women using sequential HRT which is a change from 'under 5mm'. This ought to prevent a lot of unnecessary biopsies.

Before, women were being put through (often) unnecessary investigations, yet it's been known for years (my personal experience with specialists) that a higher limit was reasonable when on a sequential regimen.

I do agree that an annual scan should be factored into 3-monthly regimens but sadly the NHS doesn't have the money or time for this. (Although women can ask to be referred privately if they can afford it.)

The main point is that hyperplasia almost always shows with bleeding, so a scan would be done and treatment carried out accordingly. The stats are also reassuring. Last time I looked at this, after a year on estrogen only, (which isn't done now but was in the past when HRT first came in) 20% of women would have hyperplasia but only a small percentage (I think it was around 1%) would have endo cancer. The stats on the link from the BMS give figures as percentages but not absolute numbers.

You're right to draw attention to it and yes, women should know there is a small risk and be ready to ask for a scan if they have symptoms.

It has been brilliant for my mood and libido.
I still get hot flushes in summer, which is more like my ability to regulate temperature i guess.
Im actually going to try mirena and patches again soon to see if i can tolerate it better now my periods have finally stopped, but if not, then ill go back on tibolone, as no idea how to stop the hot sweats otherwise

I do agree that an annual scan should be factored into 3-monthly regimens but sadly the NHS doesn't have the money or time for this. (Although women can ask to be referred privately if they can afford it.)

I don't think the NHS should be prescribing this regime if we can't do so safely. Scans could be done in clinic if the clinician can scan.

I don't think the NHS should be prescribing this regime if we can't do so safely. Scans could be done in clinic if the clinician can scan.

In an ideal world. But NHS meno clinics do not (I assume) have a consultant gynae who's an expert in scans just hanging around. It's specialist training at consultant level.

Can I say (kindly) that if you are not using HRT and aren't party to the conversations that happen, it's not helpful to keep repeating it all.

The most important point is that hyperplasia usually shows up with bleeding. You and I don't know what posters here on 3 monthly cycles have been told about this.

The info from the BMS doesn't prohibit long cycles. It says women need to be told about the risks. It would be completely impractical to scan women every 2nd cycle (ie at 6 months) and especially if symptom-free.

Just two points to add

1. Utrogestan vaginally - I used it this way and it still affected my moods so can still.be problematic h

2. Tibolone, is a medication not HRT. It works through something to do with oestrogen receptors ....but if you don't have any oestrogen it won't really create it for you. It still helps with not flushes and protects bones but it is not giving hormones. Other impacts of oestrogen loss will still continue eg loss of collagen etc.

It is not approved in the US

I was on it for around 3-4 years then changed back to HRT

@silverhamster Tibolone is a type of HRT but it's synthetic (not body identical.) It does have an estrogenic effect on the body.

It doesn't require an additional progestogen with it because the compounds in it combine estrogen and progestogen.