Endometriosis UK
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Who should I be referred to? Bowel issues

Was officially diagnosed with endometriosis in 2008 wasn't removed due to being on my urether, pouch of Douglas with adhesions that essentially my surgeon couldn't deal with and was led to believe it simply wasn't possible which I know isn't the case any more. However after several treatments Zoledex fitted the best and stopped my periods for almost a year. Fast forward through IVF journey, blessed to have my little boy and breastfeeding I had no periods and therefore no major issues for several years (some complex bladder issues during pregnancy thought to be endo related but manageable) however since my periods returned 10 months ago things have steadily returned (although not yet to the extend before) 

However I now have rectal bleeding 4 days before my period starts along with general pain and difficulty with bowel movements. Sec has been off for the full 10 months as so painful with random bleeding post (smear done already) My GP wants to refer to colerectal surgeon but I want to be seen in a BSGE centre. What's the right course of action here? To me it's primary cause is endo so anything else before is a waste of time? 

Who do you all see for such issues? 

6 Replies

You already were diagnosed with endo so severe that a general gynaecologist couldn't deal with it in 2008. However, the BSGE endo centres hadn't got up and running then. However, they now have been for some considerable time and it is required by NHS protocol that you are seen in a BSGE centre. Why your GP would think a colorectal surgeon is the appropriate person to excise endo from anywhere, including your urethra (or perhaps you mean the ureter?), I can't imagine. The colorectal surgeon is present at complex laps in case there are complications that require bowel surgery. Click on my name and have a look at my post on the treatment pathway and tell your GP that you wish to be treated according to NHS protocol that requires that severe endo must be dealt with in a centre. If you are in England take a copy of the NHS England contract and give it to them. If you are outside England tell them that the same provisions apply through RCOG and the BSGE itself.  


Thanks, yes it was evidentally a spelling error. 

Their logic is more that they are focus on the new rectal bleeding prior to my period rather than seeing it as a progression of endo. So my query was should this be the case initially or because logic would decide it was related that it should be straight to a specialist endo centre. 

Thanks re referral pathways. I had seen your very detailed post regarding that prior to posting 


You will need to be referred to a centre anyway and it will take several months before you will have surgery so I should get that moving straight away rather than delaying it by waiting for a referral to colorectal to come through. We know that you have rectovaginal endo and cyclical bleeding from the bowel is a sign of this. Endo on the uterosacral ligaments or on the outside of the bowel is active cyclically and irritates the inside of the bowel to cause IBS type symptoms such as constipation and sometimes rectal bleeding. The bleeding could also be caused by a fissure (tear in the anus caused by constipation) but I assume your GP checked for this? There may be little to loose by having a colorectal surgeon do a colonoscopy as long as it is as well as the BSGE referral and not instead of. Timing of a colonoscopy is is likely to be relevant - if done when you are not bleeding you will probably be told you just have IBS. Your GP needs to be clear that the referrals are for different issues. One to check the general state of your bowel and the other for necessary and recommended treatment for known severe endo. x


Thanks, that makes sense. Didn't even consider timing etc so that's really helpful 


And yes all things checked etc. plus it recurring only once per month 4 days before my period every day so they say it's unlikely to be the other suspects 


My early symptoms of endo were similar to yours, rectal bleeding during my period and bowel problems, plus occasional abdominal pain. Consequently, my GP referred me to a gastoenterologist in the first instance - which was a mistake. I had a flexi sig, found nothing, and went back to square one. I wasted years suffering thinking it was 'just IBS' before an ovarian cyst led me to finally be referred to a Gynae consultant

So my advice is - if you think it's endo, ask to be referred to an endo specialist. They'll understand the bowel issues, and deal with it appropriately. Don't be fobbed off like I was.


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