Endometriosis UK
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Possible endo - should I speak to my GI or GP?

I am currently an outpatient in gastroenterology; I have seen a specialist here twice and am awaiting further tests and another follow up appointment in a month or so. They believe I have IBS based on a blood and stool test coming back clear (other than low iron); I have also had an pelvis ultrasound on my ovaries and cervix which came back fine.

After reading stories on forums and researching online, I believe that my symptoms fit well with endometriosis of the bowel or maybe rectovaginal endometriosis (I don't want to self diagnose but you know how it is when you're ill everyday and don't have any answers). I haven't spoken to anyone about this yet as whenever I have mentioned the symptoms related to my periods, they have been dismissed and I get told that it's "probably IBS".

My question is, who do I speak to about my thoughts on this? Is this something I should discuss with the GI specialist when I see her? Or do I go back to my GP to discuss it and go from there? I'm not sure if the GI specialist would tell me to go to my GP anyway or what would happen.

Feeling a bit lost so thanks for reading!

5 Replies
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I would talk to both of them, but a GP will need to refer you to gynae (although your GI may write to your GP and recommend a gynae referral, which will help). I also had GI investigations because I had bowel symptoms (chronic constipation, passing mucus and sometimes blood) which I had been told several times was IBS. I had a sigmoidoscopy which was clear and when I told the gastro that endo was suspected he said it fit with my symptoms. I was found to have a large rectovaginal nodule as well as further lesions on my bowel, and my uterus and bowel were stuck together.

IBS just means you have bowel symptoms that they can't explain so it's not really a diagnosis, it means they don't know what is causing them and it seems to be really common for women with endo to be shrugged off with IBS when they say they have bowel symptoms.

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Thank you for replying! I have similar symptoms and have read so many stories of women in similar situations being diagnosed with endo years and years after seeking help. I'll definitely mention it to both my GP and GI when I see them!

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I agree, both. With a condition like Endo, I would advise anybody where you might see more than one specialist to keep notes, Consultant letters and results. Then when you go and see your other specialist it is there to hand and they don't end up wasting time and money repeating tests etc.

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That's a good idea - I will request my letters and results (particularly as I've had quite a few appointments at this point). Thank you :)

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Thanks everyone for responding! I thought I'd update on here in case people look at the post and wonder if there is an answer. I had an appointment with the GI specialist and she is going to refer me to gynaecology herself if one more test under the GI department comes back clear! I don't know if it's the same for everyone but it may be helpful to know that your GI specialist can refer you.

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