Post menopause, pernicious anaemia and endometriosis

[Fiestadrive]

Diagnosed with endomeriosis over 15 years years ago, had Prostap injections for 6 months, with little success and opted to try Mirena Coil first before hysterectomy. Mirena was a god send for me, it was great at controlling my symptons, I've had 3 mirena coils in total. The first one for a year and a half, second one for 5 years and then replaced, and third one for 7 years due to age/menopause. Mirena was removed 3 years ago and all was good. Hwever over the past year pelvic area very painful, headaches, womb, pouch of douglas area painful, its as if my endo has returned. Anyone else had this? Grateful for any comments. Thanks!

[Poppyg16]

Hello Fiestadrive, I’m so sorry that you are going through this again as I expect you were hoping the hysterectomy would be the last of it so you could finally get on with some living. I’m 56 years old and have had problems since my periods started age 12! I was diagnosed in my early 20’s with endo and later on in life developed adenomyosis and adenomyomas too, which are a type of fibroid. I have been stage 4 for years, bowel envolment etc, and was unable to have a hysterectomy when I needed one a few years ago as I also needed treatment for breast cancer which also put me in menopause, so had to have a smaller surgery to just remove the adenomyomas. Throughout my life I have had 10 abdominal surgeries!!! mostly by general gynaecologists who only ever removed endomtromas and never fully excised the rest of the endo so it kept coming back very rapidly. I was told that after menopause that symptoms would get better and the pain, bowel, bladder problems etc are now down to extensive scaring. I have now however been diagnosed again and am finally in the right place under the care of a specialist centre as having active endo post menopause and the constant high levels of pain and symptoms are as bad as ever, just without the bleeding now that periods have stopped. There are quite a few post meno people on this forum who are still having symptoms, it’s very real. I’m bed bound most of the time unable to function on very strong pain killers and morphine which is still not taking away all the pain, which is at a very high level and my abdomen is very distended. I have also developed fibromyalgia too which on its own is a massive challenge. I am now on an urgent waiting list for an hysterectomy, endo pelvic clearance and bowel resection at a specialist endo centre as mri has shown a patch of endo that has doubled in size in a year. My consultant is very honest with me and told me that there is still much research to be done around post menopausal endo, but it is a very real thing as it can develop its own hormone supply to continue growing even when the ovaries have stopped working. There is not enough recognition and knowledge within general practice relating to endo and for me the surgery needs to be done as it will just keep growing and cause even more serious damage. It is not fair that we are told the myth about menopause magically ending our endo battle, but then this condition is never fair, we just develop very good coping strategies and I have had to constantly lower my expectations of what life is for me and accept what I can control and what I can’t. I so hope you can get the help you need, it may be a fight to be heard post menopause but you know your body better than anyone. Stick with it and maybe find some credible information about post meno, endo to print out and take to all your appointments. Feel welcome to use my story as evidence if you need too. A specialist BSGE centre would probably be the best bet for you as hopefully you will, like me, find a consultant who will take you seriously and give the help you need to stop this progressing again too far. I really do feel for you as I expect you thought this endo stuff was all behind you and that life would fully begin at the change. I wish you all the best with this and hope you soon have answers and treatment you need to get back some control of your health.

All best wishes Poppy

[Fiestadrive in reply to Poppyg16]

Thank you Poppy for taking the time to reply. You've had a tough time as well, I just 'assumed' endo would disappear post menopause but obviously the mirena coil kept it at bay, until it was removed. I'm waiting on appointments coming through, as well. Take care.