Surgery help: I have stage 4 endo, since... - Endometriosis UK

Endometriosis UK

72,901 members53,259 posts

Surgery help

Prettygreeneyes123 profile image

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

Written by
Prettygreeneyes123 profile image
Prettygreeneyes123
To view profiles and participate in discussions please or .
Read more about...
3 Replies
PixieDot profile image
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 profile image
Perla19 in reply toPixieDot

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 profile image
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.

Not what you're looking for?

You may also like...

When is surgery necessary?

For the last few years I've had very heavy periods - annoying, but manageable. For the last 12...
Jenn2022 profile image

endo returns after hysterectomy 6 months ago

hey just wondering if anyone has had a hysterectomy and endo return..I had a scan 5 days ago and I...
Ryanamber profile image

Surgery

hey I have a 12.5cm cyst on my left ovary as well as endo in the bowel. I’ve been told that I...

HELP

Hi I hope someone can help me in had a complete hysterectomy 5 years ago as severe endo and also on...
Ladybird189 profile image

Surgery options

I've been diagnosed with severe endometriosis, cysts on my ovaries and fybroids. I've been put on...
Crazy4cats profile image

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.