How long did you leave it until your bowe... - Endometriosis UK

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How long did you leave it until your bowel op after diagnosis?

luthien profile image
6 Replies

So I've had my first laparoscopy with removal of a lot of endometriosis and freeing my bladder from my uterus, but they've left a bit on the bowel near my rectum (it's just on the surface) with the uterus still stuck to it as they need a bowel surgeon present, which I understand.

I'm due for a follow up appointment sometime March, but doc has said it's up to me whether I want to consider the bowel op or wait until symptoms start then look into it. Either way it's still there.

Anyone been in the same situation? what did you do?

I really don't know whether to go through with another laparoscopy; it's been a month and I'm still recovering from my first. If it's still there can it spread? I know it can get worse and that I may or may not have symptoms.

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luthien
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Starry profile image
Starry

Hey I had a similar dilemma. I had my diagnostic last December. A large RV nodule was attaching my vagina to bowel and adhesions distorting bowel into u bend.

I was initially reluctant to do more surgery as I took a long time to recover from lap 1 and the risk of resection/ stoma worried me, but the surgeon had indicated I would likely need further surgery when I first came round.

I tried mirena for 5 months then zoladex. Neither worked and we also ruled out a oopherectomy. By June I was struggling badly with extreme chronic fatigue and worsening back pain so I agreed to the surgery figuring that my Endo was still active, and was at risk of penetrating all the way through at which point a resection would be unavoidable.

The surgery was mid July. Turned out my nodule was larger than expected i escaped with a bowel shave but the damage to my vagina was significant. I needed a vulvectomy and lost 4cm2 of my vagina.

Given my nodules size and ongoing activity I probably did the right thing for my circumstances, but there are specific risks to weigh up when the bowel is involved. It's never clear cut but depends on the severity of symptoms, the extent of the disease, and the effectiveness and tolerability of hormonal therapies.

The first thing is to get a bsge referral ( only BSGE Endo centres are allowed to do pararectal excision surgery) and meet the colorectal surgeon to get his opinion to help you understand your individual situation better so you can reach an informed decision on whether to proceed.

Some links to read

endometriosis-uk.org/sites/...

omicsonline.org/laparoscopi...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

luthien profile image
luthien in reply to Starry

Hi thanks for all the info.

It's good to know others that have gone through the same dilemma!

I have had my gynaecology doctor that specialises in endo peform the first op, and all previous consultations. He has referred the photos taken during the op to a bowel surgeon and have advised that it will require another laparoscopy and not more complex surgery as at present the endo is only on the surface of the bowel.

I do not want to go down the route of hormonal therapy as ive been on the pill previously for 10 years; we are looking at having children (whenever that happens, naturally, no intensive planning) so really don't want to be back on hormone treatment. Plus I'm not keen on medication long term.

I'd like to get it sorted soon, but would 5 to 6 months after the first op be enough recovery time :S

Starry profile image
Starry in reply to luthien

According to this description of the body's healing process it takes up to 3 months to recover from a lap. centerforendo.com/is-my-end...

I was ill after my first but would have been able to have a second by then. Your doctor's wouldn't reccommend it if it was too soon. But under the NHS pathway it does need to be done in a BSGE centre as the Surgeons there are specially trained in advanced endo excision skills and are accredited every year.

luthien profile image
luthien in reply to Starry

I have a check up in 4 months so I guess he will discuss it then.

My appointments and op are all private - referred via my NHS GP. This stuff is my consultants specialism :)

Starry profile image
Starry in reply to luthien

As long as you're happy he's working to BSGE standards X Hope it goes well.

Ronacorn profile image
Ronacorn

I had a private consultant too and was so glad I did because it is his specialism. He did a total peritoneum excision for me 2 weeks ago and the only problem i am experiencing is with my throat/windpipe which I think is something to do with the ibuprofen they gave me during and post op which can cause heartburn. I think thats not too bad considering I had a 4 hour op and hes done the best he can for me using his specialist skills. He is doing a follow up soon and I look forward to sharing with him. I believe trust is a key element between patients and doctors

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