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[bubble tea]

Hi, I am 59, post menopausal, and would really appreciate some advice.

I wrote on the forum in 2023 about having progesterone intolerance/sensitivity but desperately struggling with menopause symptoms, and got some helpful advice. I have severe depression and anxiety when using progesterone - like off the charts.

Unfortunately, despite seeing a MS privately I am still having issues with menopause symptoms and my hrt is up in the air.

In Nov 2023, I was initially put on Lenzetto spray daily and 100mg Cyclogest (progesterone) pessary every other day and things were improving on this. I was still having some flushes and mood swings, but was finally able to sleep.

In March last year, for safety the doctor wanted me to increase the Cyclogest to every day. Unfortunately, this amount must have been too much for me as after a week or so, I fell into a terrible depression and began to feel suicidal. It took a while for this to come out of my system and tbh it's been up and down since then. I feel as if I still haven't got my life back since this "breakdown" of sorts.

After this, I used just the Lenzetto for a while until I felt more like my normal self. The doctor, who is really helpful, then wanted me to reintroduce Cyclogest every third day so at least I had some protection. I did this and it was ok but was not sustainable long term because of the low dosage.

I have now been put on Oestrogel - 2 pumps per day instead of the Lenzetto (which was off licence because I was taking a higher dose). I am still on the very low progesterone dose but the doctor wants me to increase this to every other day, with a view to trying every day again.

As you can imagine I am terrified of increasing the dose but don't want to come off the Oestrogel in case I go back to flushes, mood swings and not sleeping as well. Additionally all the upheaval has left me with low mood and lack of enthusiasm for anything really. I don't feel like myself at all.

I did in error go up to 4 pumps of Oestrogel last year as I misunderstood the instructions. I did feel ok on this but obviously I would need a lot more Cyclogest to continue with this regime so it's not possible.

I have seen the MS several times now, had umpteen blood tests, and a scan last summer (which was normal). This situation has been my life for over a year, it has cost be a fortune, and I feel worse than I did before I started. I feel no further on regarding a treatment plan.

Does anybody who has any experience of progesterone intolerance have any ideas? I have been looking at bazedoxifene/Duavee - but have not discussed with my doctor yet - instead of Cylcogest but as it hasn't been recommended to me I'm not sure if it is even a viable option.

I know there used to be specialists who would put patients on low doses of progesterone but every medic I have spoken to - several of them - will not even entertain such a thing.

If anyone could advise me on someone or something I would appreciate it - many thanks

[flo69]

Hi Bubble Tea, Have you tried Tibolone?
I hadn't found this forum in 2023, but I have progesterone intolerance and could tell you horror stories of being suicidal during one pregnancy as well as with synthethic hormones in the pill, the mini pill and every one I tried of that type of HRT. I tried cyclogest last of all, after utrogestan, provera and norethisterone, after all those I refused to take another progesterone, they were destroying my life.

I dug my heels in, the GP was angry about that because she had explained to me that progesterone intolerance didn't happen with HRT because of the much lower doses involved. I chose to believe my body rather than her books, so she took me off everything cold turkey and told me I'd get all my symptoms back, but it was my own failure to comply was the problem.

Eventually I got tibolone off a very grumpy lucum who was shown it by the pharmacist as something to ask me about after she spent "so much time on it" that she felt the need to complain to me about the amount of time it took to look up all the different HRTs.

I was thinking, if anyone learned about it before declaring themselves experts, they wouldn't need to spend time looking it up at all!

Anyway the pharmacist knew his stuff better than any of the doctors, knows the available medicines. Knows which ones women actually keep coming back for month after month after month and which ones they quietly stop taking and are afraid to stand up to the doctors who say their symptoms don't exist because for five out of six women there is no problem with progesterone.

The NHS has tibolone as a first line HRT for women with progesterone intolerance, I've read that, but not all the GPs have.

I'm 55 and very happily starting my third year on tibolone, knowing my bones are protected without having to put myself through hell.

[Mary G]

bubble tea, I'm really sorry to hear about your progesterone issues but as you probably know, it's a real problem for so many women on here and the reason so many women give up on HRT and go on to develop one or more of the medical conditions caused by oestrogen deprivation.  Progesterone doses need to be tailored to the individual if they are to work properly and without dreadful side effects.

I'm afraid the medical professional are obsessed with unnecessarily overloading women with high doses progesterone and in many cases, they don't need such a high dose of progesterone and could safety take a lower and more tolerable dose, particularly if they are older.  They have a one size fits all approach, dose women up to the eyeballs with progesterone and in the case if the NHS, they don't even bother to scan women unless they have a problem and all sorts of gynaecological conditions get missed as a result of that. 

It sounds like you were happily settled on a regime that worked but the doctor took fright, changed your regime and you are struggling to come back from that which is not surprising.  From what you have said, the Lenzetto and Cyclogest 100mg every other day were spot on and the Cyclogest dose was just right.  Did she suggest a transvaginal scan to check your womb lining measurement before changing your regime or was she taking a wild stab in the dark?  If the Cyclogest dose had been too low, you would most likely have had bleeding issues.

I tried Lenzetto years ago and found it to be very weak, how many sprays were/are your taking?  I have found Cyclogest to be very effective in 50mg doses. I'm 63, using two (recently increased from one) pump of Oestrogel, testosterone and 50mg progesterone transdermal gel (which in theory is not supposed to work for endometrial protection) everyday and I occasionally add in 50mg Cyclogest for good measure.  This year, my womb lining measurement was just 1mm which is too low, it's normally about 3mm.  Admittedly I have just increased to two pumps of Oestrogel but it demonstrates why it's so important to have regular uterine scans otherwise you are just guessing how much progesterone you need and effectively working blind. 

My advice is get what you need from the menopause doctor and then do your own thing and have regular scans.  I would start by going back to what worked before Andrew have a scan in about 3 months to check your womb lining measurement.  It could be worth trying Duavive or Tibolone it things don't work out but I would try adjusting your existing regime first.

I hope that helps.

[bombsh3ll]

Nobody has to be left struggling like this for goodness sake!

As others have mentioned tibolone is a good choice for progesterone intolerant women.

So is duavee although availability in the UK is a problem - you could try sourcing abroad if possible, I believe it is available in the south of Ireland. You would probably have to visit a clinic there, but once a year might be doable.

There are also multiple synthetic progestins that could be tried - desogestrel, drospirenone, norethisterone or provera.

I am assuming the mirena IUS has already been ruled out?

If you are really wedded to "body identical", and I would question whether that level of suffering is worthwhile for an absolutely minuscule difference in risk of any negative health outcomes, then professor Studd did used to allow progesterone intolerant women to take shorter courses eg 7 days per month, or 10-14 days every 2 months for example.

The important thing is that he was monitoring the endometrium in these women with a scan every year or so.

If you do choose to take less than you are prescribed, and in my opinion as long as you are well informed that this may increase the risk of endometrial hyperplasia you should have the autonomy to do so as it is perfectly legitimate to accept some risk for a better quality of life, then I would strongly advise you to book a private pelvic scan at least once a year.

[flo69]

There is Tridestra as well. I remembered it reading bombsh3ll's post. It has oestrogen all the time with progesterone only once every three months.

I wasn't allowed it because I bleed every month and additional progesterone doesn't seem to have any effect on my bleeding at all, so I would still have bled when I normally do and they said no because of that. I'm not quite sure why that's a reason, but it was.

I liked the idea of only having to take progesterone four times a year instead of twelve or thirteen times. I might have been able to handle that. I can handle having a bleed every month, that's not a problem at all, it's the way progesterone wipes the floor with me and made me take so much time off work I gave up work in the end.

[bombsh3ll]

Tridestra is unfortunately no longer available however you could put together a build-your-own version with 20mg of provera for two weeks in twelve, alongside your estrogen of choice.

Again endometrial monitoring with an annual scan would be sensible.

[CrispyChick]

If you visit a bhrt clinic they will tailor their products to you. Plus ask for scans. But it'll cost yet again I'm afraid. 😔

[bubble tea]

Thank you everyone for the helpful messages and taking the time to reply. It is a minefield out there. if it wasn't for this forum and the useful advice I would be in a worse position.

I wish I had known that I could potentially take a lower dose of progesterone long term when the MS increased the dosage. I hadn't had a scan at that stage and when I had one months later it was within normal range. So stab in the dark on her end really!

I have ruled out the mirena coil myself, although I know some people do well on it, because I couldn't risk a bad reaction to it.

I had considered bhrt at the beginning of this process but had ruled it out. Maybe I should look at it again.

You've all given me a lot of options to explore so many thanks. I think I'm going to book a scan immediately as a starting point so I know where I am.

Many thanks x

[Periscope76]

Hi Bubbletea, I’m perimenopause age 48 but very progesterone intolerant.  I’ve tried six different combinations of HRT so far and the P week once a month is always hell.  I’ve just been started on Slynd, Drospirenone. It’s not body identical but I’m a week in and no tears or anxiety to report plus I can take it continuously with no bleed… I take 2mg sandrena with it. Good luck!