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Having read hundreds of posts across many forums, I thought I would contribute my story in case it resonates with anyone, as well as put a call out for any help/wise words/advice.
Since 2007 I have been stuck in a cycle of referral and discharge from the GP to a gastroenterologist with an IBS vs. Crohn’s diagnosis, due to IBS-diarrhoea symptoms with obstructed/incomplete defecation (have to splint every BM, often 10 times a day), rectal bleeding and urinary urge incontinence, symptoms that affect me daily.
Following a colonoscopy and proctogram in June this year, I was found to actually have an internal rectal prolapse; rectal intussusception; enterocele (large); rectocele (retaining 20% of the contrast medium); solitary rectal ulcer and perineal descent of 8cm. This was relayed to me by the nurse at the end of the proctogram, without any real plan or context, only that I would have to wait until August to see the colorectal surgeon, but at my age (27) and without any children, they would be hesitant to perform surgery.
My appointment with the surgeon is on Friday, but I have since received an appointment for biofeedback in October and also an appointment to see a clinical geneticist in November along with a leaflet on connective tissue disorders! I presume that a tertiary referral was made to a geneticist querying an underlying condition that’s led to such a poor state of my undercarriage in spite of never being pregnant or having had surgery. However, it would have been nice to have actually had a consultation before receiving this literature in the post.
I had placed so much hope on this upcoming appointment, thinking that at long last there might be a definitive plan that will help improve my life, but now I fear that this won’t be the case. I’ve read so many manuscripts on biofeedback and cannot see how it would be indicated for me when my symptoms are so bad, but if anyone can often a bit of insight or advise on how to approach anything, I would be so very appreciative.
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