Surgery help

[Prettygreeneyes123]

I have stage 4 endo, since 2011.

Lots of previous surgery and removal of cysts and endo.

I now have another 7cm cyst and endo surrounding bowel.

Consultant has given 2 options, 1. Remove cyst and clear endo as best he can. 2. Full hysterectomy. There is risk of damage to bowel. 1-3% for option 1, and 5-7% for full hysterectomy.

I just don’t know what to do. I am almost 46.

Can anyone please help/advise?

Many thanks

[PixieDot]

HiGosh, completely understand what you are going through. Similar - At 43 I needed to make radical decision too. My bowels was very stuck - also had ovary stuck to bladder… I was in such a mess, very hard and bloated - ironically looked pregnant. Never got to that! Anyway I went with everything out ovaries, cervix, uterus, and a bowel peel but gave consent for a bowel resection and temporary stoma if required. I did my research, though only had a small window to decide what to do. After surgery all I wanted to know was about the bowel… fortunately the colorectal surgeon managed to peel like a veg peeler after cutting.. eww I know. I was determined to not do any HRT for the first year in order to rid self of endo - this is the only way. Second year I did start on oestrogen patches Estradot - v good. But have now changed to a gel Sandrena - v good. Two years and six months I feel amazing even with Surgical Menopause… just a shame it was such a journey alone - we need to fight for better women’s services. Good wishes to you for whatever decision you make… if you have any questions, don’t hesitate to ask…

Good book to read Endometriosis, The Experts Guide to Treat, Manage and Live Well with

[Perla19 in reply to PixieDot]

Hiya, thanks for posting this! I had both ovaries removed in July (already had hysterectomy and bilateral salpingectomy in 2019). I’ve been struggling with menopause symptoms and on-and-off pelvic pain and have been wondering whether I should take HRT. I’m worried about exacerbating the endo. You say in your post that you stayed off HRT for a year and that this is the only way - was this after researching? Did the menopause symptoms continue right up until you went on HRT? Sorry to ask so many questions - no pressure to reply of course! Really glad to hear that you are doing well now 😊

[Lindle]

Are you being treated in a tertiary endo centre? No surgeon should be saying they will remove endo as best as they can or offering a hysterectomy as an alternative treatment as it isn't. A full hysterectomy with or without ovary removal should only be done as a last resort and all endo should be excised at the same time. This can only be dealt with by a multidisciplinary team in a centre.