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.

Thanks ChainsOfFlowers

Perpetualstateofchaos is Prostrap the same as Zoladex? I’ve been offered these injections but the gynae put me off by saying it will plunge me straight into menopause and the symptoms are horrible, as someone who has struggled with perimenopause the last 6 years this worried me a little. Can I ask if you have had any awful side effects from it? It would be great if you could keep me posted. Good luck with the jab today.

mrslme have you found the hrt has helped? Can I ask what type you are on?

Thanks for the link, yes I saw this. The only research I fiound was this piece which was inconclusive - proper studies are needed!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5850813/

Due to the lack of high-quality studies, it remains unclear how to advise women with a history of endometriosis regarding the management of menopausal symptoms. The absolute risk of disease recurrence and malignant transformation cannot be quantified, and the impact of HRT use on these outcomes is not known. Multicentre randomized trials or large observational studies are urgently needed to inform clinicians and patients alike.

@Gio I know, clear as mud and you feel like you are the guinea pig for the trial and error to see how it affects you.

@Perpetualstateofchaos I was put into a chemical menopause at age 27 for 6 months to help the endo then straight into surgery after that because my endo doesn't fully respond to meds as proven in the surgery. I found it very hard going, was given add back HRT (specific to that process not what everyone has now) I had hot flushes, my moods swung wildly, I was angry a lot which is the polar opposite of my usual cheerful self so I never wanted to try it again. I am glad it seems to be working for you.

My peri symptoms are very mild, brain fog mainly and a lot more emotional, I cry far more now than I ever did. That's it really so whilst it is this good I will wait.

It's bizarre isn't it. Every woman goes through menopause and endometriosis is extremely common. Yet doctors don't know how to manage it in menopause.

This is my second time round. I was on zoladex at 19 and it was horrendous with the hrt i was given. I was awful and so reluctant to try this set of meds but 2 ops for it since and pain as bad 4 months after the op i had to try something. This is part of me trying to get a hysterectomy as i cant cope with it anymore been over 20 years

Its similar but its a liquid rather than a pellet whoch is much nicer. Ive been on had a few nights struggling to sleep towards the end of the jab but no hot flushes, anxiety (which i can suffer from) no low moods either. After the 1st week i felt much calmer and more motivated and happier in my own skin. The massive plus for me was the reduction of bleeding i had 1 5 day bleed rather than 1 10 day and 1 5 day a month in previous 3thatbwas with transemic acid. Pain wise its much more manageable.

Jab is done arm this time is a little achy. But managed work as normal afterwards which involves a fair amount of lifting.

@Goldenbrowntexturelikesun When I had patches I had worked up to Evorel 75, I thought they would increase it to 100 but I actually managed to get an appointment with a specialist nurse who recommended trying Oestrogel (My GP had told me I would need so much Gel it wouldn't be suitable which the nurse was not impressed with!) I'm currently on 2-3 pumps a day. It definitely feels like it's working better than the patches which always seemed to become 'not enough', if that makes sense!

@Goldenbrowntexturelikesun
Just wanted to give you a little update. I had my 3rd jab yesterday which was week 8. From about 6 and a half to 7 and a half weeks starting the prostrap i had more pain than i have been having on it but easily managed with mefenamic acid. Prior to injection no pain relief was working for me.
Still no side effects of taking it with the hrt. Although i do notice a bit of dryness if hrt isn't used. Still feeling much more positive and better in myself overall. The nurse i saw said shes only ever known 1 person prostap not help with endo.
I have my consultation with my hospitals endo specialist on tuesday so i am hopeful he will agree to a total clearance as ive proved i can tolerate the hrt.

That’s very reassuring, thank you.

I hope it continues to help you.

I was attending an Endo clinic from the age of 46 when I was first diagnosed until 51.
From my own diagnosis I became peri menopausal at about 42. It took me 20 years to get the Endo diagnosed.
It was an Endo specialist who suggested HRT when periods became less frequent. I was under the impression it was a huge risk but he was brilliant and oversaw the HRT.
It has really, really helped in terms of hot flushes.
All I can say is now that I am post menopause no longer having periods is such a gift I can’t begin to tell you. They were taking over my life in the end.
I do still get flare-ups where the Endo was detected it hasn’t entirely left me. But HRT has not made it any worse and has brought me other benefits.
Hope this is of some help!

Thank you.
I’ve booked to see a private endo and hormone specialist so hoping she’ll be able to suggest something to help me.

Im glad it could help. I was so worried how id be after how i was when i was on Zoladex nearly 20 years ago. Honestly its the best decision i made this year. Colleagues at another site have said how much better i look.
I hope you get answers and find a soloution that works for you.

I was diagnosed with stage 4 endo in my late 20s. I had a Mirena coil fitted at 40 and it changed my life. No periods, no pain just a very occasional cramping when Mirena was due to be replaced.
Because the Mirena coil is licenced for use as progesterone HRT I just added oestrogen patches as I started to notice peri meno in my early 50s. I had 4 yrs of HRT until I was diagnosed with breast cancer, even though I went cold turkey with HRT I didn’t have any endo symptoms. I did have mild hot flushes but it really wasn’t the horror that people were predicting.

I’m now 3 yrs on and have had absolutely no problems. Without oestrogen the endo has no chance, I’m actually taking Anastrazole, an aromatase inhibitor, from the family of drugs commonly used to treat endo.

Endo is so debilitating but I can honestly say that the Mirena coil freed me from endo for the last 20 yrs.

I do have a lot of scaring and adhesions in my abdomen, my bladder is a mess, but I have lived with the consequences of endo for so long it’s normal for me.

I feel that since endo is hormone driven post meno is probably the best cure.

I was diagnosed with endometriosis in my mid 20's, I had to go private, my GP at the time was awful. The consultant put me on the pill, I can't remember which one and it did help for a while but not with my moods. I had a womb ablation mid 30's which didn't work and in my early 40's I went into peri. I've been on HRT since late 2021 and at first it was working okay. I switched GP practices and my allocated GP took me off tablet form HRT as it was apparently bad for endometriosis, I hadn't had any recurring symptoms. I've been on Evorel for a year, started on 50 and I'm now on 100, I can't tolerate the Utrogestan orally at 300mg and I've also had a major flare up on my endo. I feel really ill all the time. A different GP put me on 200mg of Utrogestan vaginally and to take it continually. I still feel pain where my endometriosis was previously. I'm at a loss what to do next tbh. I was offered the coil and refused. X

Following with interest. I was diagnosed at 20 with severe endo. I'm now 48 and peri. I have daily pain and vagifem is irritating it so I dread to think what HRT will do. I got a prescription this week but haven't collected it because I'm not sure I want to mess with my hormones when my symptoms aren't too bad. I didn't tolerate the mirena and cerazette gave me migraines almost daily. Progesterone makes my endometriosis far worse. I've had lots of zoladex and similar and the menopause from them was severe and everything all at once. Peri is nothing compared to that horror. Each period is one closer to the menopause and I'm looking forward to it. My GP was not knowledgable at all about HRT. The risks outweigh the benefits for me right now I think. I'll be following with interest to see how you get on. Good luck!

I was offered a Mirena several years ago for my very heavy periods (way before I know I had endo) but refused and opted for a uterine ablation in 2022.

My gynae said it came with very minimal side effects or post op issues.

Sadly, that wasn’t the case for me as I have developed post ablation failure and am in more pain than ever. Since found out that I had a small adenomyosis before the ablation (this was picked up on a us scan a few months before the op but never mentioned). The ablation has caused the (undiagnosed at the time) endometriosis to enter the walls of my uterus. Had thengynae done his job properly and picked up the endometriosis I’d opted for the Mirena instead of the ablation but because I now have all the scaring from the ablation they wouldn’t be able to insert the Mirena.

Personally, I now wish I’d had the coil, several friends have it and it’s changed their lives, I wish to god I’d opted for that instead of the ablation which has caused me so many issues.

Would you be able to have the Mirena as you’ve had an ablation?

Do you get any side effects from taking the utrogestan vaginally? I’m seeing a private gynaecologist next month who specialises in hrt and endometriosis. I was going to ask if I could take it vaginally as I have awful IBS and have heard utrogestan isn’t great on the digestive system.

Pei is such a minefield when you have endometriosis isn’t it? Just makes everything so much worse to deal with.

I have the Vagifem but have been worried it will make things worse and also cerazette but would absolutely hate my migraine to be exacerbated especially the aura migraines I get as they are hormonal and after 20 years of suffering from them they still scare the life out of me!

I’m seeing a private endo gynae soon who specialises in hrt and menopause so I’ll keep you posted on what she suggests.

Hi , I have adenomyosis and I’m on ovestin and cerazette . I was diagnosed last year aged 50. I have to take the mini pill to stop bleeding, and the ovestin because of atrophy. I haven’t gone on stronger hrt as I worry about making the adeno worse .

Have you found the cerazette has helped? My gynae says he wants my ovaries to stop functioning and to stop my periods but I’m worried about having breakthrough bleeding as the pain from post ablation failure is at its absolute worse during my period, I really don’t want to be bleeding at random times, the pain is bad enough once a month. I’m also worried the progestin will bring on more migraines.

@Goldenbrowntexturelikesun , I suffer with migraines, but it’s been ok . The cerazette has hopefully stopped my horrific periods , that also had spotting between them .

I saw consultant he wont give me a hysterectomy atm. He's out me on the waiting list for an op with removal of endo adhesions and possibly removing an ovary if it does have an endometrioma. Im also having a hysteroscopy to try and confirm adenomyosis and a mirena inserted. If it doesn't help or adenomyosis is really bad hwll look at hysterectomy but is reluctant to take both ovaries and just have me on hrt.

My gynae is reluctant to offer a hysterectomy. I can’t work out if that’s due to a safety thing or an NHS money saving exercise because when I saw a private endo gynae (who is also the top endo guy at my NHS hospital) he was more than happy to offer me a hysterectomy but sadly I don’t have the funds for that.

I feel the NHS just want to experiment with all the cheaper options and hope one of them helps rather than going to the expense of a hysterectomy. I appreciate it’s a major op but they’ve messed me about for over 20 years.

I’m more than happy to see my uterus leave me.

It's strange isn't it. I cant afford private either.
My consultant is of the hrt is not as good as body produced hormones brigade from the sounds of it. He's only got what I've told him and in my notes and wants to see for himself what's happening which is fair enough. I've had 20 years of experimenting too. He's told me I might have to have a laparotomy because of scar tissue due to numerous ops so potentially a long recovery time regardless.

Let oks like we are on a similar journey. I’m waiting for a lap, going to be at least a year though!