Endometriosis UK
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Freaked out my surgical recommendation.. really want advice from women who understand!

Hi guys. Well I got my MRI results last week. Consultant wants to cut out a 4-5inch section of my bowel, by the sigmoid colon cos it is severely adhered to uterus, ovary and pouch of douglas. He also wants to remove my left ovary as it is stuck to uterus and is in wrong place, contorting uterine ligaments and has a large haemorragic endometrioma. Im to take the analogue injections for 6 months with hrt to manage side effects, then use permanent meds to continue medical menopause after that. I have extensive endometrial deposits round back of my uterus which has also been pulled out of place by adhesions. I also have cysts on my kidneys which gynae consultant didn't know anything about so he's consulting with urologist..

He said my stage 3-4 endo is rapidly approaching stage 4 due to bowel pulled out of place and the total 'obliteration' of pouch of douglas. They r doing colonoscopy to check lumen of bowel as it showed up v inflamed.

I have no idea what to do and am terrified by prospect of such extensive surgery. I have a 5 year old and my husband works long hours.. the proposed 12 week bed rest seems unreal!

I want to dismiss this all and try to manage things naturally, but am worried by the structural abnormalities. I asked surgeon if I could hold off and he said only with the induced menopause. However he also said getting pregnant isnt impossible and this whole thing started cos we want another baby! Im 39 and afraid of menopause symptoms. Plus just started new job and not yet eligible for sick pay!

My pain levels are 3/10 constant (which I can manage), with 5-6/10 for about 10 days in month, which I manage with meds and diet.. reducing to a 3, and 7-10/10 every period and ovulation which always makes me reconsider my natural approach!

Has anyone had this surgery and been pleased with it?

Has anyone managed this naturally?

How have people got on with the analogue injection?

Any advice welcome! I'm all over the place 😥

6 Replies
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are you being seen at a bsge centre?

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I have it as an option. My consultant is gynae and works with colorectal and urologist at local hospital. He said this surgery is their main one and he has never had complications. My husband works at the hospital nearby that is bsge accredited and the surgeon there said he ll take my case. My consultant said its up to me and he ll do referral if I want..

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Please go to the bgse for a second opinion. NHS guidelines for endo say that bowel endo should only be treated by a bsge accredited centre.

This gives you the surgery stats for all the bsge centres - as you can see a bowel resection is pretty uncommon and I can't emphasise strongly enough that you need to be seen at a centre and get a second opinion on this.

bsge.org.uk/wp-content/uplo...

I had severe stage 4 endo - I had a large rectovaginal nodule measuring 3cm+, further bowel endo, my uterus was stuck over against the bowel on the right and the whole lot was stuck to the pelvic sidewall. Kissing ovaries (stuck to back of uterus), hydrosalpinx in the right tube, it was growing round my left ureter and on my bladder, obliterated pouch of douglas. I was offered surgery by a general gynae but went on to the bsge centre instead and had 2 surgeries with them. They were able to shave the endo off my bowel so I avoided a bowel resection. To become an accredited centre they have to perform a minimum number of these complex surgeries and provide follow up data and you also get support from a specialist nurse.

With regards to the drug induced menopause - please don't be afraid of this. I've had 2 courses of these drugs. It's fine. Don't let the word menopause frighten you. They can be really helpful in stopping periods temporarily when the pill isn't suitable or doesn't work, and lowering your oestrogen can slow down the endo.

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They can operate on severe endo out of a BSGE accredited centre if they still operate a specialised centre that follows the BSGE/NHS England specification and submits data to the BSGE for auditing. So effectively they have to operate a centre as if it were accredited. This doesn't sound to be the case and if this is so they need reporting to the RCOG.

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Bella29 I just recently had same operation one week back..and now im home recupperating frm this extensive surgery. First they did several test /MRI/CT/PET prior to my operation. I've been on and off to ER for the last 3months coz of bowel adhesions and didnt expect that it was that severe already.my cervix was severely attached to two adnexal masses,Colonic/Ileal segments was se..in short they were all stuck together and I cannot no longer eat or drink anything, Its blocked. Also my small intestines ,muscles of colon and cervix are all positivr with severe adhesions frm endometriosis plus chronic endocervicitis with Nabotian Cyst.

It was a 6hrs surgery and I thank God and my family for surviving in that o.r room. its quite too much and overwhelming ..I was scared to do it but my doctor told me I cant live like this and it will got more extensive if i left it that way..

Im still recuperrating..taking medicines and to follow up with my doctors after a week.

I hope that you'll find the right doctor whom really cares and sees the bigger picture that Endometriosis is not just an ordinary desease..and may you get the help and ease after this.

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My goodness, you've been through it! Thank you for replying. I wish you well with your recovery xx

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