Hi,I’m newly diagnosed,51,in chemical menopause chiefly for PMDD but it’s working well for endo pain too.I’m also on HRT.I’m hoping to stop chemical menopause soon to see if my natural menopause has happened and I’m looking for advice/anyone who’s experienced using HRT and if it impacts endo pain.I use progesterone too so it’s not unopposed estrogen which I understand can cause flares.It’s all very new and I know my situation is quite niche.Hoping someone may have some insight into endometriosis in the menopausal transition/HRT.
Thanks,
Julie
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Harlequin1
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Hi! I'm in chemical menopause too ( I'm 36). I tried the HRT tablet which is both hormones, I think it's called Tibilone. Within 3 days of taking it my endo had been really awakened and was terrible. I then switched to the gel and a progesterone tablet and was much much better.
Please note however there is a national shortage of HRT gel (I ran out 10 days ago unfortunately and can't get any for love nor money) so you might want to try perhaps a patch instead? Not had experience myself for that but hoping to try that once I can get through to my GP
Hi,thanks for the reply.I use patches already and I know about the shortages which is such a nightmare.I’ve been using HRT for 6 years and the endo pain has been gradually getting worse.I guess I was wondering how post menopausal people found the experience/HRT use but thanks for replying and good luck getting patches.
I haven’t tried much in the way of HRT, I did have Zoladex in between ops in 2020 with Tibolone. Neither did anything for me pain wise.
I did want to message more to say I was diagnosed Dec 2019 at 51, I understand that it can still be daunting regardless of age. I’m not even sure why it blew up when I’d coped every month, but for me it’s either starting CPAP which increased inflammation or possibly peri menopause.
Had lap Feb 20 and hysterectomy November 20. I will say, so far no bad effects from the hysterectomy. I’d always said I’d never have one, but pain says otherwise. My uterus was large and lots of fibroids.
Please ask away 🙂 I don’t mind any questions if it helps.
There are a few of us here, but it is a small group. I’d imagine it’s wider than any Dr would like to consider 😂
There is a new HRT, Bijuve, it’s only available privately, I was quoted £55.
Hi,thanks for replying.There’s not many people out there in the menopausal transition/endo camp that I can find so thanks for getting in touch.I’ve been using HRT for six years and endo has crept up into the mix and has been successfully helped with chemical menopause.I’m aware natural menopause(which I hope has happened)often reduces/ends mild endo but I’m in the dark as to whether if you add HRT post menopausally you can trigger endo pain again with the estrogen.That’s my concern and there’s no info out there about it.I suspect I’ll just have to see what happens but dealing with PMDD too it’s quite a balance to consider!Thanks again
There’s a Facebook group, surgical menopause uk, there’s often chats about Endo and menopause. Research gate website has research articles, I often use this.
Hard for me to respond re pain/Endo as I’m still battling pain. I was told it was residual nerve damage, but recently diagnosed gallstones so it’s more likely that.
Oestrogen is potentially a trigger, but no one is that sure. I was told the Bijuve was Endo friendly. If I was going to use HRT I’d be more tempted at that than Tibolone.
Unfortunately there is so little info on Endo before, we’ll be waiting a long time for post menopause.
Thanks,I’m a member of that Facebook group you mention and didn’t think to ask there.I also haven’t heard of Bijuve so shall add that to my list of notes and research.Thanks,I do appreciate your information.
I was diagnosed for the first time with a huge stage 4 mass at age 51, seven years after surgical menopause to include full hysterectomy and BSO. My pelvic organs were pristine at histology and my endo (which must have been lying dormant in my pouch of Douglas as that is where the mass arose from) was triggered by oestrogen only HRT which is associated with recurrence and malignancy.
It is important that unopposed oestrogen is not given as you have mentioned. Note that endo doesn't necessarily go dormant after menopause as it produces its own oestrogen within its own cells. You don't mention having had any excision for it.
In any event, endo or not, HRT is a risk balancing exercise and this might be especially so when taken after natural menopause when endo is involved. The new ESHRE guideline (full guideline) covers this in some depth, so might be helpful. Link below (page 137).
In the general population I suppose endo at your age (and what was mine) is quite niche but on support groups there are many in that position. I run a UK endo guidance group and we have a lot. Please feel free to pm as we aren't allowed to give links.
Thankyou,this is all really helpful information.I found your Insta and Facebook group from your profile.No I haven’t had any excision,I am literally just diagnosed as have been completely distracted by PMDD but the pain had become something I couldn’t ignore.It’s not severe,just background and sometimes at the level of quietly affecting my day.
I would definitely not be using unopposed estrogen and I’m getting the idea that that is important.
Bottom line is I was given HRT through misdiagnosis of ‘just perimenopause’ when I actually developed PMDD at 45.HRT doesn’t strictly treat PMDD so I may not have even needed it.I do now need it for chemical menopause but when my transition to natural menopause is apparent(could be now,could be 2/3 years!)I wanted to collect information about what I could expect.I may not ‘need’ HRT for symptoms when my natural state is established in which case the debate is settled.I was struggling to collect information for my seemingly niche position.As with PMDD I’m feeling more empowered learning that treatment is not written in stone and there’s probably going to be trials and pitfalls ahead.I’m still establishing medics too but have learned it’s best to be informed for these discussions.
I’m 53 and in surgical menopause (ovaries removed because of endo complications but I have my uterus still). I was advised to take hrt (progesterone pill and oestrogen gel) and I have had no endo problems since starting that, 5 years ago now. A colleague had full hysterectomy and then hrt and she still had endo symptoms sadly
Thankyou,it’s very useful to collect all these experiences as they’re so varying.It’s really making me understand there’s ‘no size fits all’ which is knowledge in itself,even if it makes the decisions less definite.
My superb surgeon (at a specialist endo centre) referred me to a menopause clinic, in part because I’d had some other complications, but was so helpful, might be worth you asking for a referral for some personalised advice
I’ve been in the care of an NHS menopause clinic for some time for PMDD which has sadly been inadequate.I have however had one apt at a pelvic pain clinic in Oxford and they’ve been great.I’m trying to merge the endo/PMDD situ together under one roof right now.I tend to be quite sensitive about being informed the best I can before appointments as PMDD is woefully misunderstood hence all my questions!But yes,fingers crossed for a smoother ride for this conundrum.
Hi, there, last year at 49 I was put in chemical menopause for endo, I also had a mirena coil, so getting progesterone from there, I was given estrogen gel which my consultant told me does not interfere with the endo. It took a good few months of being on it to notice a difference in pain, however the nurse hadn't been giving me my prostap injections at the correct intervals to start so this meant I continued to bleed and have pain. I think we probably had a similar situation although I have just had a full hysterectomy and so glad to be done with it all as I just felt so ill with all the side effects of the coil and prostap.
Well I'm 45. Not sure if I'm in peri- menopause or what as I have the Mirena therefore no periods, but still have a cycle., but having horrendous night sweats, as I did when I was on Prostap, but I used to get them anyway when the endo flared up.
So cut to the chase; I had excision surgery last June, which worked fabulously for all of 6months, when the dreaded symptoms returned. I cannot get a gynea appointment for love nor money as they're so busy. Took matters into my own hands and did some research.
I've been taking Progesterone tablets (Utrogestan) without and oestrogen (for now anyway - only flares the endo up something chronic) and it's worked wonders in controlling my endo symptoms AND the night sweats.
As I say, I have no idea where I'm at in terms of ?peri menopause; I just can't get any support at all.
But please do give it a go and if you feel you may need oestrogen, use the gel (as previously recommended), but a teeny bit and just titrate it accordingly.
I hope this helps you, as much as it's helped me. It's a minefield isn't it?
Thankyou,this is very interesting and I’m glad you’ve found something at least a bit helpful.My only problem with this regime is that my other condition,PMDD gives me a progesterone sensitivity so I try and avoid it at all costs.I cope but on a reduced dose.It’s such a pain to have so many things going on isn’t it?I Will remember this though,thanks.
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