HRT and endometriosis...... help!

[GeorginaLS]

Hello so I am 52 and had endometriosis through 40s - diagnosed after 8 years as is the way - surgery at 49. Symptoms ( horrific) stopped for a year then came back but lessening now and periods are also more irregular. I must be periomenopausal!
I think I should be on HRT but GP prescribed evorel sequi which from reading is not ideal at this stage. Previous experience of taking progesterone to lessen symptoms was disastrous and made me bloated tired and even more miserable.
Any ideas on what I should be taking? Much appreciated...

@GeorginaLS Trying to help but not sure what your question is :)

Why do you think Evorel sequi is not 'ideal'?

As you are in peri meno not post men, you do need a sequential type of hrt.

You can't have estrogen alone if you have a uterus. All HRT will include progesterone. The sort you have been given includes it on a cycle, rather than daily (for post meno women.)

Does this help?

post men = post meno (ha!)

@jinglinghellsbells - thanks so much I appreciate that and yes my question isn't clear and you are a mine of information!! Most grateful. Firstly - I understand all HRT contains progesterone. Evorel Sequi was what my ( nice) GP gave me after a consultation where we discussed symptoms etc - 52, periods becoming irregular, memory poor. So I was all set to start it... But then I did some homework and started reading about how peri-menopausal women who have had endometriosis but want to take HRT need to be aware it could be problematic.

So I shelled out for a private clinic appt and was told Evorel Sequi was not a good idea for several reasons - one- because it contains progestins ( I think? ) rather than progesterone. Sigh.

Bec I had years of endo previous attempts to take progesterone ( on it's own to lessen endo symptoms) resulted in my oestrogen levels surging ( if I have understood correctly what this doctor was saying) and consequently bloating, tiredness and generally feeling low. So I am wary of all it really but def think I should be on HRT - as it seems illogical not to be replacing hormones which are rapidly diminishing with negative consequences for my body...

And really my question is - WHAT YOU SHOULD TAKE AS A PERI-MENOPAUSAL 52 yr WITH ENDOMETRIOSIS TELL ME AND I WILL DO IT but instead the advice seems so contrary. The private clinic have prescribed me low progesterone and testosterone and told me to ditch the Evorel Sequi. I've taken nothing yet by the way as at the beginning of all of this....Thank you for replying, it is much appreciated by the way.

Okay here goes!

I am not an expert on endo. I have been told I have some scarring from adenomyosis (which was clearly never diagnosed when I was young and had bad period pain.) Having used HRT for 12+ years it's not made it any worse.

My understanding is that it's estrogen that fuels endo/ adeno as it makes the tissue grow. Progesterone stops the 'proliferation' , as it's called.

I am not aware of any difference in the pain/bleeding with endo according to the type of progesterone used ( either synthetic progestins or body-identical micronised progesterone.) There may be, but logically I can't see how as it's estrogen that makes the endo grow.

I have never heard of any type of progesterone causing estrogen 'surges' because- for example- women on the mini pill (progesterone only) don't get that and they tend not to ovulate either.

I would guess that with endo, the more progesterone you take, the better, as it will reduce the growth of endo in your body (fuelled by estrogen) so that would mean taking continuous HRT which is a daily dose of estrogen and progesterone. Please bear in mind I am simply suggesting stuff and am not medical!

If you were to go for a continuous regime, the gold standard at the moment is estrogen as a patch or gel, plus daily micronised progesterone 100mgs.

A lot depends on if you have pain when you bleed, and a continuous regime would avoid a monthly bleed.

I'm a bit surprised you have only been given progesterone and testo as testo is never usually prescribed without estrogen. Most women using it start a few months after they have had their estrogen dose sorted and feel the need for something else too.

(Can you PM me the private clinic as I do have some ideas about which are good and not so good.)

There is an up to date paper on this- I will PM it to you.

@JinglingHellsBells thank you again. That is fascinating. You know a lot. My experience whilst still having regular periods (so over the last five years) was of taking progesterone as a lozenge to reduce the endo symptoms ( which were horrendous but only during a 5/6 day ovulation each month, but for 8 or so years..) But the progesterone didn't work to help with endo, at all, at all at all. I felt rubbish. This was also after extensive endo surgery, when as happens the pain came back under a year later. Progesterone made no difference and possibly made things worse as when I took it I just bloated badly and felt very sleepy. I also gained weight - whether fluid or not I don't know.

Now, as I am def peri the private clinic seems to think it is a question of trial and error to get the dose of progesterone right, which may mean taking it then stopping for a few days, which I am dreading as it is a. time consuming to be constantly monitoring symptoms and b. I'd rather not have them. The endo pain is massively diminished by the way - because I am heading towards menopause - but because of this I want to take HRT. I will read the paper... I am also keen to use the NHS for HRT. We should all be entitled to equal treatment and not have to pay. Peri- and menopause still seems poorly understood though, even by good GPs. If I could safely take Evorel sequi I would, but I am panicked about what is the right thing to do. Thank you for your thoughts though, very much.

Realistically, getting treatment for this on the NHS is probably zero at the moment. There are very few NHS menopause clinics and the waiting times are long. They are also not necessarily staffed by the right people you'd need, sadly. The one clinic in the UK that has a good reputation is the Chelsea and Westminster, London and they do get referrals from across the UK. But again, how long the wait it now is unclear.

Was the progesterone lozenge supplied by the NHS? All I've ever read says that lozenges don't work.

You really do need a consultant to help you and one who has experience in endo and HRT/ menopause. If you want names, I can PM you.