Stage 4 endometriosis in bowel

[Doolittle4]

Hi I was diagnosed with stage 4 endometriosis 8 years ago. It was found in the iliem, the small part of my intestine. I was getting a lot of blood from my back passage. I was booked in for a bowel re-section but then my Mum got diagnosed with two brain aneurysms & needed two lots of brain surgery so my operation was put on hold. I then moved out of the area to another end of the country so had to start everything from scratch again from there as they couldn’t access my previous health records. I had to get that myself. I lived with it for a while but the last two years have been really debilitating. I can no longer go to the toilet without laxatives or doing at home enemy’s. A scan of the large bowel last year showed endo now tethering the sigmoidvpartvof the colon as well as the ileum. My body constantly feels toxic & I feel light headed. I have finally been put with an MDT team at Preston & Chorley hospital but it’s taken me a year and a half to get a consultation & my consultation has been pushed back twice.

I live in the north of England. Can anyone recommend the best NHS hospital for endometriosis that I could be asked to be referred to please? It’s needs to be one with a multi disciplinary team that specialises in complex cases of endo. Thank you so much. Xx

[Regenallotment]

Goodness you poor thing, this sounds horrendous. Well done for battling to get treatment in your new location. I'm baffled as to why the NHS can't be more joined up.

Have a look at bsge.org.uk/

They have a map and you can put your nearest city in - I typed Preston and got this....

bsge.org.uk/centre/central-...

Also one in Chester, another in Burnley and one nearish Halifax.

Good luck! Keep on keeping on 😊

[Doolittle4 in reply to Regenallotment]

Aww thank you so much for those links.

I agree, it would be amazing one day if the nhs could all use the same system to be able to share previous scans etc. One day maybe. 🤞

I will have a read up on Chester also. 🙏💕

[Hannah818]

So sorry to hear what you've been through, as far as I know there's two bsge centres in North west near chorley, one is Preston hospital and the other Burnley teaching hospital , details on the endometriosis foundation website , hope you get an appointment soon

[Doolittle4 in reply to Hannah818]

Thank you very much. Fingers crossed. 🤞 🙏

[Stephstark25]

Hey,

I'm not sure how far it would be for you but I'm under Saint Mary's hospital endo team in Manchester - It's meant to be one of the best endo clinics in the UK (outside of private).

They have always been really good with me and do work to keep you informed though waits times are long as we all know with the NHS.

Hope things get better for you

[Doolittle4 in reply to Stephstark25]

Thank you so much. Yes heard good things about Manchester. Did you have surgery there? And did they put an MDT team together for you if you don’t mind me asking?

[Stephstark25 in reply to Doolittle4]

Yes in 2021 to remove stage IV endo and a large ovarian cyst.

My endo is pretty aggressive and has come back as of 2024 so back with them now.

And yes, I got put on the MDT team both times due to the extent of the endo attachment to the bowel and other areas.