Endo after menopause?

[JoBangles]

I am 58 and have been struggling with almost daily pain for the last 12 years. I had my ovaries removed 8 years ago but did not notice a huge benefit then I was shunted off to urology where I was diagnosed with interstitial cystitis. Urologist now suggests that it may be the endo that's giving me all these aches and pains. I would like to know if anyone else has been in a similar position after the menopause, I thought it was all about hormones. I am new to the forum but it's reassuring to read I'm not the only one who takes a hot water bottle everywhere, including holiday in the med!

[Jenny8]

Sorry, don't know from my own experience, but I'm 42 and have a mirena coil and when I saw an endometriosis consultant in January he said "you're only 1 or 2 mirenas away from the menopause and your endometriosis will go away then" (I'm paraphrasing). This would suggest his belief, as an endo expert, is that endometriosis goes with the menopause.

[JoBangles in reply to Jenny8]

Thanks for taking the time to reply - I am so confused by it all!

[Marcia71]

Sorry to say endo doesn't necessarily go with menopause. I've had a hysterectomy and my ovaries removed and am in daily pain. Finally had lap that diagnosed endo had remained. It was lasered off which unfortunately doesn't treat it so I'm now awaiting excision with bsge centre.

If there is enough endo it can produce oestrogen to feed itself. Or hrt can feed it or the ovaries so there are options as you can see

Get yourself referred to a bsge clinic and prepare for a fight as many people do not believe endo can grow after menopause or hyster but I'm evidence it can.

Good luck

[JoBangles in reply to Marcia71]

Hi Marcia, thank you so much for your kind message.

After always having painful periods I was looking forward to a pain free life but here I am, having more bad days than good. My main symptoms include almost daily abdominal and pelvic pain, frequency of urination, leg pain and bloating and now my back has joined in the party!

In a strange way your message is reassuring because it enables me to believe that if I get a positive diagnosis for endo then something could be done about it. It's such a limiting condition, sometimes the physical pain and the negative effect on my life really get me down.

I am hoping to be referred to a BSGE clinic in Bristol and I only hope that the waiting lists are not too long - I've got so much I want to see and do and I have already spent far too much time in bed curled up with a hot water bottle!

Thanks again

[Julie-66 in reply to Marcia71]

Hi Marcia thank you so much for this, I feel like I'm going mad! Going for a sigmoidoscopy on Monday as doc said it's bowel problem but the pain is exactly the same as before my hysterectomy and bso 18months ago? I'm not on HRT except for low dose vaginal pessaries for atrophy, gynaecologist said it's not a risk for endo , and that any Endometriosis there will die off ...had no excision because I wasn't seen by bsge or any specialists only general gynae, which I think was the problem-they don't "recognise " endo:didn't touch it /didn't look properly ie in pouch of Douglas etc? So here I am in excruciating pain daily and feel like I'm going mad! Have you had your surgery yet and if so how are you now ? Really hope it's worked for you and you're ok 🙏🙏Sorrry for long reply lol xx

[Marcia71 in reply to Julie-66]

Hi there.

Yes I've now had excision in March this year and feel so much better. Apart from endo removed I also had adhesions removed and scar tissue. Also bowel was stuck to pelvic wall which was due to endo and probably causing a lot of the pain so was unstuck and finally had appendix unstuck and removed. So pretty major surgery in the end but I feel loads better and am no longer in daily pain.

Hope you get some help soon

[Julie-66 in reply to Marcia71]

Oh wow that's great news, may your recovery carry on being successful! Thank you for replying 😊- I've just realised we've chatted before ha ha ! I'm on the Facebook site as "champers" so I'll have to try to keep in touch with you from there maybe, but before I go can I just ask were you on HRT Marcia? Because I'm not it seems like no one is taking me seriously, yet I'm convinced it's endo ?! Xx

[Marcia71 in reply to Julie-66]

Yes I am on hrt. When under general gynae I was on an oestrogen only one (evorel 50) which is bad for endo sufferers according to my bsge surgeon. She now has me on a combined one - Kliofem.

It really is a battle to be heard after hyster/menopause so keep battling.

Happy to talk here or on Facebook 😊

[Julie-66 in reply to Marcia71]

Thank you ! Yes I will do, totally had enough now, suffering for 30 years and going through hell, ending up with hysterectomy but no better ( though I had Adenomyosis which obviously it worked for but you know what I mean lol) Trouble is I'm not as confident as I'd like to be and find it hard to insist on being seen etc, was thinking if no answers after sigmoidoscopy (said he'd order an abdominal scan if it's clear to see what's going on ) how to ask for a referral when I've never been officially diagnosed? Been told after laparoscopy and hysterectomy I had inactive endo /saw endometrial scarring but nothing else except it being suggested 12, years ago -yet all the symptoms of us endo were there but ignored, so I don't even know if I'd get a referral for bsge ? X

[Marcia71 in reply to Julie-66]

Could be a struggle to get that referral but could ignore fact endo inactive and say endo and it's effects seen at hysterectomy so as that's not worked for you, you want to be seen by a specialist at bsge centre.

If you can afford it, it would speed things up to pay for an initial private consultation with a bsge specialisation of your choice and they then can tell you process to be seen on their nhs list. I did that with specialist at bsge centre at Guys.

[Julie-66 in reply to Marcia71]

Yes that's exactly what I was thinking, though I already paid privately to see Natalia Price at Oxford and although she's very good, I think she was more concerned about my atrophy and prolapse than the possibility of endo . Went back on NHS for follow up but saw a different consultant who recommended sigmoidoscopy, he said he thought it could be diverticulitis, and that endo was "highly unlikely as you've got nothing left in there "....*sigh* Said could be adhesions though. Also said they'd do another laparoscopy if nothing shows up at GI testing .So there's still hope I guess ! (Ps Went for initial consultation re bowel , this one said doesn't think it's diverticulitis!😩😂All very confusing! ) Ok thanks for the chat , I'll wait and see what the sigmoidoscopy reveals if anything then go from there , really appreciate your help and taking the time to, let's catch up again soon and I'll let you know how it went. Take care xxxx