Menopause and endometriosis - anyone been through this?

[WearsblackLoveschocolateAvoidspeople]

I only found out last December via MRI (after decades of gynae issues) that I have deep endometriosis and adenomyosis. I was 50.

I am now 51 and on a year long wait to have a laparoscopy. In the meantime I have spoken to my regular NHS gynae, a NHS endo gynae and a private endo gynae.

They all offer up differing opinions. One says my endo should disappear when I reach menopause, the private guy says it won't and I'll more than likely have it for life. One says hrt may help and one says hrt (especially the oestrogen side of hrt) will make it worse and that I should stick to just progesterone.

Needless to say I am confused.

Most support groups are full of younger women who have not yet been through perimenopause and certainly not been through to menopause. I am finding it hard to track down the experiences of older endo sufferers.

I feel awful tbh. I had an ablation 4 years ago which has failed causing me more pain during my periods. I've had a 26 year long journey with IBS/gut issues which has been just awful during peri and I'm sure there is a connection there also.

I'm kind of hoping menopause may offer me some relief from all these years of suffering.

I'm the same age and have similar issues. I had an ablation in 2018 but it was successful and helped with the bleeding.

I'm on HRT at the moment. I still have v severe pain. The GP referred me for a scan last year that showed I have endometriosis (one ovary completely fixed), adenomyosis and fibroids. We agreed that as I thought I was so close to menopause we would leave it and see if it got better - it hasn't got better so I'm actually paying for a private appointment on Weds as an emergency with a pelvic pain specialist just to understand the options.

Tbh if I could take out my own womb myself now I would. I've just had enough of it. I am not sure whether it's worth having a laparoscopy if it's not guaranteed to fix the issues if you see what I mean.

I totally understand, I would have a hysterectomy in a heartbeat if I could but sadly my gynae wasn't keen to go down this route which is really frustrating.
I'm not overly impressed with him tbh but he's supposed to be one of the endo specialists at our hospital so I can't ask to change. He says a lap could help as he can excise the endo patches which may be causing my bowel issues?

Good luck with the private appointment, hope it goes well for you.

Yes that's what they said to me about the laparoscopy but if the adenomyosis causes pain too and it doesn't fix that then I can't see what the point is?

I got divorced when I was around 38 and I had terrible problems already then and they refused to do a hysterectomy 'in case I met a new man and wanted another baby' (despite having 2 dc and definitely not wanting any more!).

I find the whole system not to work for women tbh. Even privately they wouldn't recommend a hysterectomy. I know it's a big operation but when this pain hits, it hits suddenly and I collapse. It's far worse than childbirth and lasts longer!

I'll let you know what they say tomorrow. I don't hold out much hope but I thought it might be interesting to get another opinion at least!

Hi. Long term lurker, first time poster here. Wanted to share my experience with endo and menopause. I am 50 with a history of endometriosis, treated with couple of laparoscopies in 30s and 40s then followed by depo provera for several years which stopped my periods and generally improved my symptoms. Once peri/menopause hit I requested HRT to resolve the symptoms of that - the joys! I was advised HRT could retrigger any endo so referred to consultant who recommended the mirena coil alongside the hormones to counteract the impact in the pelvic area.

Not sure if this has been mooted for you OP. This has generally worked for me though gastric / IBS / bloating did resume to a lesser extent, but nothing like when endo was fully active. It’s tricky one to manage as I was looking forward to menopause (!) to alleviate years of gynae issues, but found that brought its own challenges. Best of luck in finding what works for you.

Thank you.

Tbh my biggest regret to date is not trying the Mirena. Two years ago I was offered to choice of the Mirena or a uterine ablation. I went for the ablation because I didn't want to try anything hormonal. Sadly the ablation failed 6 months post procedure and I now have awful pain. I requested a MRI which is when the 'deep' endometriosis was discovered, I also have diffuse adenomyosis.

According to my new endo gynae, I should have never had the ablation as it has allowed the endo to creep into the walls of the uterus causing the adenomyosis which is now diffuse. Sadly I can not now have a Mirena as the scar tissue has formed over the cervix so noting can go in the uterus.

So for me, the ablation has been a huge mistake all round.

I need to see a private hrt specialist regarding that and my issues because everyone on the NHS all offer conflicting advice.

I really feel for you, the pain is dreadful, it is worse than childbirth I cry for days during my period. It's like my insides have been trapped in some kind of metal torture device.

Fingers crossed for tomorrow.

Yep this is me. 44 and not in menopause yet but significant issues with endometriosis which has been in the last 2 years. I’ve had to wait 10 months for an appointment to follow up an MRI. I’m seriously considering a private hysterectomy if I can find someone to do it. The pain is constant, wakes me up in the night, I cry as it’s so painful. Women are just expected to put up with it.

It is dreadful to think there are so many women out there in so much pain and discomfort and just left to deal with it alone. I really can not believe any man would put up with that for years on end.

v interesting meeting with the consultant - she was lovely and appalled I'd had very little treatment so far. She asked how they knew it was endometriosis - I've only had an internal scan, no MRI etc.

she did a scan and said I am still ovulating (fgs why won't my periods stop!!) and said she thought the previous NHS scan may well have misdiagnosed me because the ovary didn't look fixed and the cysts that they saw may not have been enodmetrial cysts (or whatever they are called).. She could see that I had adenomyosis though quite clearly. She said she can't guarantee that this is the cause of my pain but most likely it was. She said there are a few options. One is to stop my periods so she's given me a pill to do that - it will stop the ovulation. I can still take HRT alongside this. She's also given me some powerful painkiller suppositories that she thinks will sort the pain.

She said the only proven cure is the hysterectomy but given we haven't tried the other things first, she'd rather try less invasive methods and given it should go away with menopause, she was more hopeful that I should be near the end of it, especially if I kill the periods now. She said if I wanted a hysterectomy I could ask for one but as I thought, the NHS waiting lists near me are long so it will probably be a year and my private healthcare won't cover it (as it's a pre existing condition when I joined).

So I feel a bit more hopeful and more importantly, I have someone who at least LISTENED!! I have to say she was very good and if anyone is in London and wants a recommendation I'm happy to give one.

( we are trying this method for 3 months and if it doesn't work, we can try something else - fingers crossed it works!)

I had endo and adeno and ended up having to have a full hysterectomy which has helped so much. The MRI showed how bad things were and there was just no question, all out rather than messing on. I am on HRT now, combined so the endo does not grow back, and I feel absolutely wonderful. I'd recommend surgery to anyone who is suffering, its worth it.

That sounds like a great plan, so glad it went well for you.

Did she suggest the progesterone only pill? I have heard this may help endo and am thinking of trying this myself.

It would be great if you could dm my the consultants details, I am in Essex so not too far from London.

I am getting to the point where a hysterectomy seems more and more appealing.

I am going to try Ryeqo for this ... hope it works (Adenomyosis) Defuse

As this thread has been bumped how are you getting on @WearsblackLoveschocolateAvoidspeople ?

I have endo and am definitely at the start of perimenopause so am trying to learn as much as possible as information seems sparse for endo and meno.

Hi CorgiAPlenty I am still bumping along unfortunately, I haven't been able to get too far with the gynae department as their waiting list are so long. I do have a telephone appointment with the menopause team from the hospital, in February so I will ask as much as I can then.

The info surrounding menopause and endometriosis is definitely so very sparse which is very frustrating.

I have not come across this medication. What does it do?

@WearsblackLoveschocolateAvoidspeople I read as many medical peer reviewed stuff as I could on menopause and endo and basically there is no funding or research into it. Imagine my shock. It literally is a suck it and see situation and each woman can have a different response. Some women report increased symptoms due to HRT either making new endo deposits or activating older ones.

I follow an endo surgeon on social media he does several operations a day for endo and specialises in the pelvic area including bowel, bladder, diaphragm endo. (I didn't realise until recently that you can suffer from thoracic endo and it can collapse your lungs) He says hysterectomy for aden should help but for endo it has to be combined with removing as much of the endo as possible and surgically not ablation.

I had a quick google of that Ryeqo and it looks relatively new for us in the uK. It says

"Each film-coated tablet contains 40 mg relugolix, 1 mg estradiol (as hemihydrate), and 0.5 mg norethisterone acetate"

It seems to be primarily aimed at treating fibroids but can be used for endo if other treatments have been tried first. I haven't looked too deeply but it isn't on the UK endo site that I can find. I believe relugolix is a type of GnRh analogue so it just regulating hormones.

I know, it's quite a scary condition. My friend has lost part of her colon and a kidney to endo. Due to it being left undiagnosed for so many years (she was in her late 40's at the time), she also now has heart and vascular issues and is awaiting major sugery. My sister lost her ovary due to undiagnosed endo. I am scared for my lap whenever that comes up as I was 50 when the mri first detected it all, I am 52 soon and still waiting.

What is the name of the surgeon you follow? I follow as many as I can to try and get as much info before my next appointment as my consultant is quite dismissive at times.

I had undiagnosed endometriosis all my life, but being on the pill made the pain OK. After breast cancer in late 40s, i had to stop the pill I then had horrible periods, and then after menopause I had some bleeding.. they found pre cancer cells in my womb and told me to have a full hysterectomy. Best thing I ever did.
The op took 5 hours as they found endometriosis everywhere with organs like my bowels fused to my womb etc.
I'm so glad I had it done. I can't go on HRT due to the breast cancer which is annoying though.

I'm younger but diagnosed recently with stage 4 deep infiltrating endo and adenomyosis
I'm under a specialist endo centre

They're planning to excise all the endo, and fit a mirena for the adenomyosis. From what I understand the adenomyosis will go at menopause but the endo won't
I'm having a colorectal surgeon and an endo surgeon

Funnily I'm sat waiting to see the consultant to discuss so I can ask about menopause if you like? Going in at 11am

To add she's a female and lovely, very informative with everything

Ryeqo - patient leaflet, side effects, dosage | Patient info

How did the consultation go?

I really wish that I had opted for a mirena instead of a uterine ablation. Good luck with it all.

@WearsblackLoveschocolateAvoidspeople really well!

The plan is to excise the endo. Separate my ovaries, remove the cysts and possibly one ovary. Remove the bowel and bladder adhesions and fit the mirena

I asked about menopause, she said it can dull everything down but it doesn't totally stop the endo however it should improve - but HRT can mean it stays the same so she said it's all a bit your mileage may vary