It's back after 7 years!

[KarenBHorrocks]

Hi ladies, not been following these groups for a while as had total hysterectomy in 2016 removing uterus and ovaries after many years of pain with stage 4 endo on womb, bowel and pouch of douglas. Went on HRT and have gradually got better since -until about 18 months ago. The symptoms I used to suffer with (wind, bloating, ibs type pains & symptoms) seem to have returned. and more recently bouts of lower abdominal pain . My GP has prescribed me mebeverene, Naproxen and amitriptyline. I was referred to a bowel specialist which has come back clear. Was wondering if anyone had experienced similar issues, I am 46 and wondered if was nearing my natural menopause age and if this might be causing it? I also wondered if coming off the HRT (Everol Patches) might be an option as I know there is oestrogen in this which may be making it grow back. I was referred back to the hospital in March 2023 but still dont even have an appointment so am trying to find solutions for myself! Grateful of any help/ideas

Thanks

[Lindle]

Did you have excision of the severe endo at the time of the hysterectomy and was it in a specialist endo centre? Also have you been on oestrogen only HRT all the while since then and what have your oestradiol levels been at blood tests?

[E-ZEE]

The best is to ask your gp to refer back to your surgeon,for further investigation.You can get the clearer picture after MRI.

[Katel10]

Hello. I had deep invasive endo removed a couple of years ago but continued to have pain. Gas, abdo pain and lower and upper right pain. I ended up having an emergency appendicectomy. Having looked it up you can get endo on your appendix and it isn’t obvious to the naked eye.

[Joonaspryte in reply to Katel10]

Exactly what happened to me, endometriosis on appendix . I had an appendectomy and they couldn’t see it by just looking, the surgeon actually came to my bedside and said, oh your appendix appears normal, histology results came back and said it was surrounded by endometriosis , glands and stroma.

[Ljs5]

This totally resonates with me and I’m also 46 so hadn’t thought about natural menopause. I had a full hysterectomy in 2018 after having multiple problems - such as heavy bleeding, large cysts on my ovaries and horrendous pain. When the surgeon operated he had to also do an oopherectomy and said I had severe endometriosis that had stuck down all my organs including my bowels. He didn’t know how I had been coping. I was so glad to have everything out and thought because it had all been taken away that would be it. Just over a year ago I started having severe endo-type pains again and once ended up in a&e with suspected kidney infection but all was clear and was just given pain killers. The last year has been a huge struggle with pain and everything in my pelvic region being reactive and painful. My GP dismissed me saying she didn’t know what it was but would prescribe me amytriptaline which I had a previous bad reaction too (her advice just take it at night) I asked for a referral back to my surgeon. He is convinced the endometriosis is back. An MRI did not pick it up which means there is no big legions but he still thinks it is there and the HRT (oestrogen) has caused it to grow again. He has prescribed me progesterone to counteract it and this has definitely helped other menopause symptoms (mostly horrendous anxiety which I’ve never had before) and has eased the pain slightly - everything is still sore and bladder a complete nightmare especially when I run. I still feel it could flare up as pain intensified and lessened before my hysterectomy. My surgeon wants to give the progesterone another month before seeing him again and offering a laparoscopy. I’m just so frustrated and fed up! Apart from asking for progesterone I’m sorry I don’t have any advice.

[Lucie44]

Hi Karen, I'm sorry to hear you're going through this after all your surgery. I have an Endo sister who has had this and had to swap to a natural form of estrogen which was a cream in addition to progesterone. She is early 40s and had Endo everywhere. She said since she swapped the estrogen her symptoms did calm down a little but it wasn't a miracle sadly. This disease is just evil. I have it everywhere too and am awaiting a hysterectomy which I've been waiting for for years. I do worry it will all be for nothing anyway reading others posts on here.