27, nulliparous, rectocele/enterocele/internal rec prolapse/SRUS

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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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15 Replies

  • Posted

    edith can I ask if you are in the UK? I'm asking because that could affect any advice I offer you. Just to add I do empathise with you, it must be so hard for you at the moment and you are so young.

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  • Posted

    Hi Edith

    I'm so sorry to hear you've been going through all this, it sounds so awful. Is there any family history of this?

    Good luck with your appt on Friday and I really hope you get some answers.

    Best wishes

    Sue x

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    • Posted

      Hi Sue

      There are bowel conditions on either side, including coeliac and ulcerative colitis, but no pelvic organ prolapse issues at all. Thank you very much for your well wishes, I do hope things can and will improve for me! 

      Edith x

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  • Posted

    Edith I will reply to you fully tomorrow. Every time I right my post I get an error message but just to say I think you need a referral to a Urogynaecologist as well. You're not too young for surgery, these conditions can be addressed x

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    • Posted

      Am really pleased to hear that, thank you for perservering with getting a message posted! I'll discuss getting seen by a Urogynae as well when I meet with the Colorectal surgeon at the end of the week. E x

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    • Posted

      Good morning edith I hope I manage to finish this message ??. What I was trying to say last night was you are not too young for surgery. Your quality of life is affected and surgery can rectify some of your problems. As I said before a consultation with a Urogynaecologist (not a gynaecologist) will give you the opportunity to discuss your options with regard to your rectocele and enterocle then after seeing both consultants you can make some decisions. The biofeedback could be to assess your bowel muscle tone but I would see what the consultants advise because it's not something that would be done in my particular area. As for genetics I think because of your child bearing age they think it's necessary but remember if you don't want to do everything they ask then don't. It's your body and your life but a comment such as you're too young for surgery really is unacceptable. If I can help at all just keep in touch x

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    • Posted

      I'll look to forget the nurse's comment about my age; it upset me more than perhaps ordinarily as I've spent so many years back and forth not being listened to properly, with doctors telling me to try giving up a vegetarian diet, go to CBT or yoga for my "obvious health anxiety". When I finally had diagnostic evidence of a mechanical problem I felt quite vindicated and validated and also hopeful that things would finally improve for me, so was quite hurtful to have that temporarily dashed! 

      Your comments have really helped me go back to that mindset and I feel better now awaiting my appointment on Friday, where I'll finally be able to intepret my symptoms against the diagnostic results that the consultant will have in front of them. I think I'm both fortunate and unfortunate that I have worked in the NHS (biomedical sci and later a PG Dip in adult nursing which I had to leave because of my symptoms), I've perhaps had a bit of blind reverance for it, whereas now I really need to say that whilst I've been able to emotionally "cope" with things, my quality of life is severely affected and it needs to be improved. 

      I phoned the clinical genetics department as well and they said that they will try and see me this week or at least discuss my notes with the colorectal surgeon. I'll make sure to discuss with them seeking the input of a urogynae as well. Thank you so much for your support, Matron. I will keep you updated x

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    • Posted

      You now appear to be in the right mindset to deal with these issues. I think it's often difficult when anyone (and I include myself) works or has worked in the NHS to be assertive because we don't want to be seen as "pushy" which we aren't at all when you think of patients we've seen over the years. It's really sad that you had to give up your adult nurse training but when all this is over I think you should definitely consider going back to that. The personal experience you'll have gained through all of this will make you an even better nurse. Good luck with your appointments and I know you probably do this anyway but write all your questions down beforehand because if you're like me you'll forget half of what you wanted to ask. Keep in touch xx

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    • Posted

      You are absolutely right about the problems of being assertive when you have your own standard of care that you've given, that you can reference against. I cannot thank you enough for your support, I think this is the first time that I've felt empowered about accessing the care that I need. x

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    • Posted

      Hi Matron - an update on my appointment today with the colorectal surgeon. 

      I'm pleased to say that I felt that I was very much listened to and that he understood just how debilitating things have been for me. He said that if they were to perform surgery now, I would simply undo it all the very next day due my pelvic floor being in such a terrible weakened state. He also said that operating would cause my IBS to become intolerable due to the nerve stimulation that would occur. The plan is to get the ulcerated part of my bowel healed and also pelvic floor strengthened by only opening my bowels by use of a peristeen kit. He is also going to refer me to a dietician in order to get my IBS controlled as much as possible, again to try and enable as much healing and strengthening as possible. 

      He is going to see me in a joint clinic with a urogynaecologist in January. Although he does expect that I will have some improvement in my symptoms, he does expect that we will be discussing enterocele repair (and also possible rectopexy). 

      Whilst it seems there's quite a while yet to go before things improve for me, I do feel that I'm now on a pathway to some sort of respite! You were instrumental to me in how I approached today and also throughout my consultation, so thank you x

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    • Posted

      edith I am so pleased your appointment went well but even more delighted that you will have a joint appointment with a Urogynaecologist and colorectal surgeon. I always felt in your particular case that was the way forward for you and I wish there were more joint clinics. You now have a plan and although it is going to take time there is hope. Well done edith and I look forward to hearing how you progress xx
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    • Posted

      He said that I would be seing a urogynaecologist, without me needing to request it, but thank you so much for preparing me for it! He was kind, slight issue when I started crying (out of relief really) and he immediately suggested me seeing a psychologist which caused me to weepsay "I'M RATIONALLY UPSET! I HAVE ALL THE MECHANISMS"... 

      Whilst I'm waiting for the peristeen kit and bowel nurse appointment, he wants me to hand over my bowel function to loperamide and glycerin suppositories, which of course is really time consuming and causes extra discomfort that I'd rather not have. But as you said there is hope so I'm looking forward to a lifestyle where I can freely bend down in sainsburys to get some hobnobs off the shelf without needing a full decontamination sessions afterwards wink xxx

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