Specialist meno clinic disappointment

[sillistudi]

Waited 18 months for this apt today.. I have 'complicated needs' re hrt due to endometriosis and adenomyosis - the outcome..? Basically I need to undertake a trial and error approach .. i could have spent the last 18 months playing around with my dosage myself as that was basically all the doctor told me to do. Furthermore that's it now, no follow up apt or advice based on what this trial & error might throw up as the demand is too high to allow that apparently.. therefore I'm left to my own devices with the trial and error anyway or have to go back into system and wait another 18 months at least!! I don't know what I expected but feel really let down. Also thinking whilst it's great meno is high on the agenda now, have we shot ourselves in the foot by flooding the nhs with demand for support as we navigate this stage of life? Anyway, rant over!!!

I decided a few years ago that the NHS couldn't be trusted with my gynaecological health. It had taken me 40 years to get to that understanding but there we are. I pay £300 a year for a menopause specialist and I see it as an investment. It also helped me to take back control so it was good for my mental health as well.

HRT with endometriosis has been slightly more challenging for me, but I'm also 18 months into trial and error.

That's with private support.

I'm just about to take the body identical progesterone for 6 weeks non stop, then gradually add in the oestrogen.

As the last attempt at HRT gel resulted in a histamine reaction.

The key now is to look at diet and fitness while waiting and ask your GP to prescribe, just go easty on the oestrogen as I'm sure you know women with endometriosis tend to be dominant in that hormone.

Right and that's the interesting thing, this dr advocated for a 'go heavy' approach to oestrogen.. double the dose I was on before which led to problems. My gp on other hand suggested starting really really low.. the clinic Dr basically sent me away with the advice that if the endo symptoms outweigh the meno ones, stop hrt.. she said nothing I've not heard on a podcast!!

I'm afraid combine endo with menopause and it gets a whole load worse in terms of medical confusion.

I had the private HRT specialist try to tell me that my endometriosis was the lining of my womb and that it bleeds inside me, say no more.

I'm afraid you really have to self advocate for the information and support.

I've been trying HRT for about 2-3 years now and at one point just went back on the combined pill to give myself a break from periods. I'm always told to have a coil which is a big fat no from me.

So for me large doses of gel "oestrogen" flared up my endometriosis to the point of me having to have surgery, so that advice is frankly dangerous.

I'm now in a place where I'm starting again what the non cyclic progesterone, then we will add in oestrogen.. tiny tiny amounts to see what can be tolerated, then testosterone.

You need a phased gentle approach, there really isn't much about juggling HRT with endometriosis but as 1 in 10 women have endometriosis and 50% of the population have menopause I'm sure the information will increase in time.

I think a lot of meno clinics are staffed by GPs who may have some limited training in menopause but they are not necessarily consultants with extensive training. On other forums I've read of women who went to meno clinics and were actually given the wrong advice altogether.

What I have read is that anyone with endo should always take combined continuous HRT (so the no-bleed sort.)

Your other option as @Willowkins has said is to find a private consultant who is an expert in endo and menopause (they do exist!) if you can afford it.

@JinglingSpringbells what do you mean by combined.. utrogestran every day?? Honestly I felt what this dr said was so formulaic, nothing specialised at all. I can't really afford private unfortunately & am also wary of these clinics as know there has been mention that some of these are just on the make. Unless anyone has a personal recommendation... ?

@JinglingSpringbells about to embark on my 'trial & error' approach..I know you're knowledgeable in this field. When you say continuous, would I take 1 utrogestran tab every night instead of 2 for 14 days? And does it matter where in my cycle I start the oestrogen/ utrogestran combo? Seriously heavy periods, migraines, early waking & heart palpitations every single bloody day are really getting me down.. but I am nervous of flaring up the endo by going back on it... then again it might help as having periods every 2 wks at the mo! How long would you give it before tinkering with dosage if things aren't improving?? Hope you don't mind me asking & know you're not my doctor but guessing you've some medical experience by nature of your posts in this area..?? Thanks so much

@hursty900 This covers some of the questions and mentions combined continuous which is both hormones daily.I don't know much about endo, being honest, but the rationale is that you use enough progesterone to control the proliferative effects of estrogen on the endo, wherever it is in your body. This would mean 100mgs daily as a minimum. Some women (without endo) are advised to use 200mgs daily IF they are using estrogen and it results in heavy bleeds. For women without endo, and who are post menopause, the daily regime of estrogen + progesterone can still result in spotting until the womb lining is thin. This link explains combined continuous HRT. Using it this way for 6 months is a guide after which any bleeding should settle down. You can start it at any time. https://www.menopausematters.co.uk/postmeno.php

[[//://www.newsonhealth.co.uk/wp-content/uploads/2021/07/Endometriosis-and-HRT-March-22-update-final.pdf

Thanks @JinglingSpringbells - I honestly think this literature & podcasts have provided me with more insight & reassurance than the 'specialist' meno clinic. What a shame..

My horns appointment with s specialist in Stratford upon Avon. She prescribed her some HRT that had made a massive djfferebcevto her life. Was given a private prescription,but after initial one NHS doctor agreed to fund it. There is now that special prepaid certificate yiu can get for 20ish pound I think for HRT treatment

For those asking for a recommendation, I'd happily recommend my gynaecologist for those in Kent. Otherwise a good start might be to find your nearest on the British Menopause Society website:
https://thebms.org.uk/find-a-menopause-specialist/

Ironic!!

I totally understand its different if you have complex health needs but I've always taken the view that there's basically limited hrt out there so what's the point of paying privately? They all seem to prescribe utrogestan and oestrogel which I asked for, and got, from my NHS gp. The only thing I'd bother going private for is testosterone.

@Cazelet agree.. I'm dubious of private health providers in general but particularly in this field.. there's a lot of money to be made. That said, there is very much a one size fits all approach via nhs in my personal experience - in all scenarios really not just meno

All info I've gleaned about private meno clinics is that they tell you to massively up the oestrogen.

I gave up years ago. My adenomyosis is one of the most painful things I have ever experienced. It's far far worse than either of my child births were. They seem very anti hysterectomy too!

It worked for me just a second ago.