Endometriosis UK

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Do I have the right to request a referral to a bsge centre?

Hi ladies hope your all not too bad.

I recently had a lap and two bits of endo we're found and burnt off ( not sure where) a dense piece of scar tissue from belly button to bowel area that they wouldn't touch and told me to get a referral to surgeons. The thing is I'm convinced this scar tissue is a result of bowel endo the reason is iv had problems with my bowel since I could remember as well as awful periods. I was constipated a lot of my younger teenage years and now it's alternating loose stools and constipation that can be absolute agony even I can feel the pain with it all in transit it's awful. I get shooting pains up both ends and have in the past few months started noticing blood when I poo on my period it definitely coming from back passage iv checked. Sometimes it's extremely embarrasing and Comes on so quick that I have accidents. I'm 32 and have had 1 child via c section. Gynae have discharged me and I'm seeing my gp on Monday I asked the secretary for report and pics she said to go through access to records. Do you think I can ask for a referral? When they did the lap they said they don't know where the scar tissue is from. I don't know what to do now?

Thanks for any answers in advance x

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I asked my GP to refer me to a bsge clinic, I gave him the address and the two surgeon names that I was recommended for my local centre, waited over 36 weeks to been seen but now I'm under the care of them. So yes you do have the right

Can I ask how was you diagnosed before bsge? My fear is because they only found 2 bits and have said they don't know where the scar tissue has come from. My gp might dismiss the fact I need to be referred. Thanks for reply x

I have stage 4 endo on the Ureters, pouch of Douglas and Bowel. If your GP does not refer you, you can always get a second opinion from another GP.

Thanks hun. Hope your getting sorted. X

You can request the referral but be aware that these centres only see and treat women with severe disease. It might be helpful if you have some idea of staging (so if it says 'severe' anywhere on your notes then you should be seen at a bsge centre).

Has the GP done anything to investigate your rectal bleeding? It is really important that this is investigated properly (even though you suspect it is endo related it's always best to be sure).

Yes they did stool samples and bloods last year then told me it's ibs iv had this issue for years since young and since endo runs in my family and I get crazy shooting pains feel like I'm gonna pass out on the loo I'm just certain of it. X

I had the exact same thing before I was diagnosed, and it was only when I was seen by a different GP that I was told that rectal bleeding should always be properly investigated with a sigmoidoscopy/colonoscopy. The blood tests alone aren't enough. IBS does not cause rectal bleeding. Can you go back and talk to someone again about the bleeding?

Yes definitely I have the same gp again on Monday I will stress this. Can they tell if you have endo by doing these tests? Sorry for all questions x

No they can't, unfortunately. But they need to properly rule out bowel disease/diverticulitis/polyps etc. My sigmoidoscopy was clear but I have bowel endo and the gastro that carried out the sigmoidoscopy said the fact that they couldn't find anything else pointed to it being endo. The only blood test that can sometimes point to endo is the ca125 ovarian cancer test which can give an abnormal reading in women with endo due to inflammation but it's not a definitive test.

OK. Thank you very much for your help I'll mention this on Monday thanks a lot hope you get sorted x

Your story sounds very similar to mine. I had a csection and a year after had horrendous bowl symptoms like you described. Bowel movements were torture and I would bleed profusely from my bum. I was repeatedly told that it was just ibs after my scans, colonoscopy and sigmoidoscopy all can back negative. I finally got referred to a bsge bowl and gyni surgeon who gave me a laparoscopy immediately. They found that I had adhesions/endo in my pouch of Douglas. They said that there were so many adhesions everything was wound up so tightly like a ball of string that it has caused my rectum to stretch and narrow. As soon as it was all cut away and removed, the pain was gone and my bm returned to normal. You know your own body, keep pushing until you get the answers you want. Good luck x

Hi. Endometriosis and abdom surgery causes scar tissue/adhesions. When the endo growths bleed during a cycle, it's got nowhere to go. Over the years this can cause dense adhesions,fusing organs together and you can feel it but not always. Personally it feels like someone's constantly pulling my side it hurts and painkillers don't help. I've got lots on lower left side around ovary sticking it to bowel. It's a catch 22 because if they go in and separate organs from scar tissue,this alone will cause more to form,they can reduce the risk of this,but it's likely to happen again. X

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