Bowel endometriosis and lesions

[MrsMarlene]

Hi ladies,

Does anyone else suffer from bowel lesions caused by endo?

I am on a waiting list for hysterectomy and bowel shave but its been a long wait and I worry how much damage this is causing me. Does anyone have experience of this surgery? At my consult over a year ago the MRI showed only a small lesion but the pain has got worse. My GP and consultant dont seem worried at all.

I'll just stay at home in bed suffering and keep taking my painkillers til I'm allowed my life back I guess. 🤷‍♀️

xMissMx

[Rasmol]

Hi my MRI scan last month showed endo adhesions in my bowel. My GP was Ignoring me and I don’t expect any support from the NHS. I am now booked for surgery next month with a private doctor as this the only solution I see to stop my daily pain. I have also been recommended taking the mini pill to stop the endo progression. My suggestion is try advocate for yourself to find a solution

I wish you all the best

[MrsMarlene in reply to Rasmol]

I have asked a handful of private specialists in my area and they wont do the operation, saying that I need to have this done by a MDT team on NHS at same time as my hysterectomy.I've been fighting for treatment since end of 2019. Private consultant charged hundreds for MRI and just put me back to long wait on NHS.

On mini pill but also daily Tramadol x 2 for pain, and medical cannabis oil with THC.

Theres no other options for me but to be patient and wait for my op....

[me94 in reply to MrsMarlene]

Hi I also have bowel adhesion. My bowel is attached to utters. Do you get daily pelvic pain when walking?

[Annabelannabel in reply to Rasmol]

Not to be too invasive but can i ask how much it cost for you to get that kind of surgery privately I'm in the same boat and need it greatly. You don't have to tell me but worth an ask as I got quoted 33k

[Hidden]

Hi,

I had an MRI just after Xmas 2023 which showed multiple adhesions to my bowel. During my appointment with the colorectal consultant he too did not seem phased, I guess they see this and worse so often that for them it’s the norm. They also (hopefully) explained to you the worst case scenario which could be possible/probable given a long wait for surgery.

I am lucky enough to have medical insurance through my employer so I am being seen at a private facility. That said, I am still awaiting a date for the operation. I require 3 surgeons and getting their rotas aligned is proving difficult!

Like you, I lay in bed or on the sofa in immense pain waiting for the day I get my life back.

[MrsMarlene]

Noone explained worst case scenario to me. Consultant tried putting me off with details of what could happen if things go wrong with the operation (useful).I have adeno, severe endo with twisted ovaries and frozen pelvis syndrome. Have had to fight to get this far - with NHS consultants who dont treat this seriously.

I wish there was a specialist facility near me but im south england.

I'm just a number to the NHS at this point. Too many of us that need treating, and no care given at all. My GP doesnt even understand endometriosis. 🤬

I cant do anything but try to keep myself sane living in such pain...

[Hidden in reply to MrsMarlene]

I don’t know if you can self fund but the links below are to the gynae/endo Consultant I am seeing. I am seeing him at Spire Cambridge Lea hospital.

spirehealthcare.com/consult...

topdoctors.co.uk/doctor/moh...

Where in the south are you? I had my first op 10 years ago in South East (QEQM hospital)

What pain meds are you taking? I’ve tried so many now that any suggestions would be welcome!

[Cutteridge74 in reply to Hidden]

It has taken me 7+ years to get a diagnosis. I’ve had 2 laparoscopies, sigmoidoscopy, full colonoscopy and several consultations on NHS to which I was told to go away there is nothing wrong it’s just something you will have. Forced to go private at Spire Lea, Cambridge to see world renowned Endo Specialist and after a detailed MRI he diagnosed me with Endo and Adenomyosis also my ovary is displaced. Definitely recommend and worth every penny

[Annabelannabel]

I know how you feel and know how you feel when no one else does. Honestly we have to wait for surgery for relief it's the only way. I've tried many hormone treatments and my surgeon wants me on zoladex and hrt while I wait for surgery lap including bowel surgery whatever that means nothing good clearly. I'm only 23 and definitely worried. We just have to get on with it and tell the NHS they have a duty of care its their problem not ours bless them. All I can say is we have this forum and thousands of women going through it all but just because there's a lot of us suffering doesn't mean it's not serious or important. Wishing you well and here for a chat if you need Annabel