I've been told I have number of organs failing to function cos of endo. Anyone else had this?

[Impatient]

Endo can grown just about anywhere, and the scar tissue that the irritations from endo cause do grow everywhere, and it is they more than the endo that can stop organs working properly.

I have adhesions on everything, endo on and bladder, on and in bowel too. While both still work and i can go to the loo, they are not working as well as they should be. The bowel especially is a constant daily issue for me and my loo trips.

I do have to keep the bowel movements soft otherwise I am constipated in no time at all.

some ladies on the forum suffer with kidney problems and the adhesions or endo itself growing around the ureters carring wee from the kidneys to thebladder get constricted just as the bowel does.

Most common is painful sex, when the vagina gets wrecked by endo or adhesions on the outer surface. Also the ovaries get coated in the stuff and fallopian tubes get blocked up and eggs cannot escape to the uterus which renders the woman infertile.

endo can easily get to anywhere below the lungs and sometimes the lungs themselves in rarer cases. There are certainly a lot of endo ladies with impaired organs dues to endo.

There are colorectal surgeons on the endo surgical teams at all the accredited endo centres in the UK because bowel disruption is so common.

[Annierossi in reply to Impatient]

Good afternoon

I read your message with interest. I was diagnosed 12 years ago with endo. Last had lap 4 years ago and laser treatment on ovaries. Have been suffering terribly with bowels ever since. Was diagnosed with fissures and haemerroids which were treated but still suffering. I was told by the colorectal surgeon that there was no sign of endo in bowel. He also said endo did not cause constipation (which, from what I have read, is rubbish). Although I get urges to go to the loo, and I do "go" every day it is extremely painful. The surgeon said next step is colonoscopy - I think this is a waste of time as I suspect there is nothing wrong with my colon. I've been to see a new gynaenocologist (my previous surgeon seems to have retired) as I'm suspecting that my bowel may be attached to something else. After examination, he suspects that my womb is attached to the bladder but said if my main problem was the bowel, I would need to go back to the colorectal surgeon (whom he knows as it's the same hospital). If you have any advice you can offer, I would appreciate it. Many thanks

[Impatient]

there are colorectal surgeons and endo specialist colorectal surgeons..just like there are gynaecologists and endo specialist gynaecologists and there is world of difference between the two types in terms of their experience and what they can spot and what they can do for you.

I would suggest first thing to do is check if the colorectal surgeon at your local is indeed an endo specialist.... attached to one of the accredited endo centres in the uk.

bsge.org.uk/ec-BSGE-accredi...

has a list of them. If nothing else it wouldn't hurt to ask you GP for a referal given that you know you have endo, and you know you are having bowel issues which are long lasting so not just due to a food irritation or a bug.

and here are a few websites you might want to read up on to arm yourself with info about recto-endo....

mjwcooper.com.au/patient-in...

ncbi.nlm.nih.gov/pubmed/163...

news-medical.net/news/20120...

danmartinmd.com/rvendo.htm

gyndr.com/endometriosis.php

gynsurgery.org/topics/endom...

gynsurgery.org/topics/endom...

some are a bit heavy on the medical jargon side of things, but bowel or colon or intestinal endo can make life very painful and trips to the loo an absolute mare.

If you are coping then surgery is something that probably can wait, but if life has got too painful, the bowel is really impacting quality of life then is the time to push to see the right people to get on the waiting list for expert surgical help.

I am not there yet...loo trips are painful and for many minutes afterwards but it does ease off and i can cope. Even the bleeding from the rear endo when the endo is active is a nuisance but i can cope with that. so for the time being i am not in any hurry to have another massive op. it hasn't been 2 1/2 yrs since the last one, and that took 17 months for my bladder to get back to working again for itself, so i am reluctant to go through the same thing again quite so soon.

It's just my own opinion on my own situation and each of us has to make judgements on what treatments we need to chase up according to our own circumstances.

Very best of luck tackling your GP for a referal to the right people to help you....even if that means travelling some distance for a consulation.