Endometriosis and menopause

[Goldenbrowntexturelikesun]

Has anyone been through menopause with an endometriosis diagnosis?

Wondering how you coped in peri, did it exacerbate your endo symptoms? We’re you able to take hrt? Did any medications help your peri symptoms?

More importantly, did the endo symptoms dampen down post menopause?

I am newly diagnosed with endometriosis and Adenomyosis (may need a hysterectomy for that) at almost 51 and feel lost as most online support is for younger women. I’d like to know what happens during peri and beyond.

Just to say I am almost 49, have had endo since 26. I was told Hrt would have no affect on my endo by a gynaecologist. Gp was wary of giving me any hrt because of the endo.

Gp was right, it has made my endo much worse and more painful. I originally had the mirena put when first diagnosed which was great and I would recommend it. Mine ran out and was put on patches. Downhill from there but am sticking with it as I need the hrt.

I am 48 and was diagnosed with endometriosis while I had the copper coil fitted nearly ten years ago now. Had a large cyst and some endometriosis tissue removed by laparoscopy then went on desogestrel (coil removed) which has kept it in check. Though I always feel I'm waiting for the other shoe to fall, slightly. About 18 months/2 years ago I went back on the combined pill as I felt the lack of oestrogen. Something of an experiment to see if it kicked things off again.

So far there have been no issues from the synthetic oestrogen- in fact I feel so much better, more energy, no vaginal atrophy symptoms. Still have pill periods but not too bad. Good luck, it can be an absolute bugger to deal with.

@Goldenbrowntexturelikesun , I’m 50 and I was diagnosed with adenomyosis last year . I’m currently on the mini pill to try and stop periods , which it is doing . But I’m having lots of spotting . I’m not taking hrt as I’m worried that will make the adeno worse . I just desperately want to go through the menopause.

This is where I’m coming unstuck, with all the conflicting advice.
My gp also said to be careful with HRT as she believes the oestrogen part will exacerbate the endo. However, I paid privately to see an endo specialist this week and he says that I should take hrt as the benefits for my longer term health outweighs the negatives (easy for him to say if it causes me more issues!).
Sadly, I can’t have the Mirena. I had a uterine ablation 2 years ago which has failed and I now have post ablation failure which has added to my pain. I wish I’d never had that done especially as the gynae had assured me I wouldn’ t get post ablation failure but then again he’d failed to pick up my endo in the 9 years that I’ve been seeing him so I have little faith in any of his advice. The ablation has caused scar tissue and they won’t be able to get a Mirena in. They have offered me the mini pill (cerazette).

Will you be able to get another Mirena? My friend has just had hers replaced at 52.

Thank you.
I saw a private endo specialist this week and he’s recommended that I take cerazette which I believe is desogestrel? How did you get on with that? Did you have any unwanted side effects? I have never taken any form of hormonal contraceptives and am very nervous about potential side effects. He then wants me to try an oestrogen gel to complete the hrt set.

I totally hear you, I really want to get through to menopause too, it’s been a nightmare 20+ years for me with horrible gynae issues.

They’ve suggested cerazette to stop my periods too. How have you gotten on with the mini pill? Any side effects at all? I am concerned about spotting due to the fact I had a uterine ablation which has failed and although I have very very light periods, just spotting really, they are so so painful due to the failed ablation. I’m hoping even if I get spotting it won’t be painful 🙏🏻

Did they suggest hysterectomy for the adenomyosis? All I’ve seen online when researching is how hysterectomy is the only cure for adenomyosis but the Endo specialist I saw this week never mentioned this and I stupidly forgot to ask.

I have adenomyosis. I never knew until I had scans when I was well over 50 (for various reasons, like a benign ovarian cyst.) It's in one area of my uterus. I've been on hrt for a long time and can't say it's made the adeno worse. I use the sequential type (fake periods each month or so) and they are sometimes a bit heavy. If you use the no-bleed type of hrt, you might be okay because the progesterone 'zaps' the growth of endo etc.

@Goldenbrowntexturelikesun , hi , I haven’t had a hysterectomy suggested unfortunately. I’m on the mini pill , but I do have an issue with spotting unfortunately.

I was sceptical about the mini pill after taking Microgynon and not getting on with that @Goldenbrowntexturelikesun, but I got on ok with desogestrel and eventually had no periods at all on it. Only changed back to combined as I needed some synthetic oestrogen, my own levels having become much lower.

@shearwater2 , hi do you mind me asking , how long did it take for your periods to stop on the mini pill?

I’ve collected my prescription for the cerazette and will start taking it in a couple of weeks. See how that goes (fingers crossed).

@Toomanysquishmallows A while I think. Maybe six months to a year? But the periods on desogestrel were very light and pain free. A marked contrast to before surgery, when I had the cyst.

Good luck @Goldenbrowntexturelikesun.

Thank you.

I also have severe endo and going through peri menopause, I'm 51. Not taking anything. My periods have become chaotic though and spot brownish blood periodically. (For a few years, almost all symptoms disappeared)
I'm looking for this mythical doctor who has amazing knowledge on endo and how it interacts with hrt. I have heard it can exacerbate the symptoms? Anyone know about any research Or a good consultant?

This week I’ve stumbled across a local gynaecologist who runs out of my local private hospital. She appears to have great online reviews and it looks as though she has an interest in not only endo but the menopause and hrt too.

Sadly I can’t afford to see her right now but am going to see if I can beg, borrow or steal and then make an appointment.

Her online profile does mention video calls so I imagine she sees people outside of the area? Not sure MN rules on naming medical professionals, can I mention her name on here?

She’s also recognised by the BMS.

Yes, endo ruined my 30s (likely had it for years before then but symptoms worsened after childbirth). Then entered peri menopause late 30s. Because I was so young it made sense to try HRT as the risks from low oestrogen so young are significant. I was warned it could exacerbate endo symptoms but it hasnt. 5 years later and I've had to tweak the hrt type and dosage a few times but overall I feel much better than I did 10 years ago.

Can you dm me privately the name of the person?

I have Endo and am Peri-menopausal for about 18 months now, I'm 50. I have a Mirena coil which has been a godsend for the Endo and my menopause nurse has said they will replace it when it's due as part of my HRT treatment. I started with Evorel patches which worked but ran out of oomph so I was given the next strength and the next strength... I'm now on gel but have been having more frequent and painful periods since changing over. I have been told to give it 3 months and then see, I would be happy to go back to patches if the gel doesn't settle down. I would rather be on HRT and tweaking than not!

nonsensicalness really good to hear that it’s not exacerbated your endo symptoms, that’s reassuring.

mrslme sadly I can’t have the coil. I had a uterine ablation 2 years ago this has failed causing more pain and issues and allowing the (undiagnosed) endo to penetrate my uterus walls causing adenyomyosis. The scarring of my uterus now means they can’t insert a coil which is really frustrating. Had I known years ago that I actually have endo I would have opted for the Mirena. My gynae has well and truly messed up my uterus and I’m so angry about that.

I’ll dm you now with her details 😊

I was diagnosed with endo decades ago. I listened to a podcast with Dr Louise Newsam and an endo specialist on the Balance website.

https://www.balance-menopause.com/menopause-library/088-endometriosis-and-the-menopause-chris-mann-dr-louise-newson/

There is not a lot of research into endo and either peri or meno, I have looked at the medical papers. I am personally just at the start of my peri journey but no real consistency to any symptoms so will be watching and waiting for a bit. Plus Ds2 is doing his A levels so no way do I want to start tinkering with my hormones until he is out the other side.

Not sure how helpful this maybe. Im 38 and have both endo and adeno. Ive been on evorel conti and prostap which has put me into a chemically induced meno (as im trying to convince my consultant to give me a hysterectomy) so far my symptoms have been much more manageable ive only missed one day due to being in excruciating pain rather than 5 plus. I was told it might get worse around 8 weeks then improve again. Next prostrap jab is tomorrow so happy to update in a few weeks

@Goldenbrowntexturelikesun I'm so sorry to hear that. All I know is that you have to keep on pushing until you get what's right for you - and that's exhausting! I went over a year without seeing anyone, I was prescribed HRT over the phone even with the added complications of Endo.