Genital Crohn's Disease?

gidget2

Regular Member

Joined : Sep 2014

Posts : 42

Posted 10/14/2014 3:51 PM (GMT 0)

Hi,

I am wondering if anybody has had experience with a perianal fistula that has migrated to the external genital area?

I've had a complex perianal fistula with abscesses for over a year and had surgery to repair the fistula. I need to schedule a follow-up to finish the surgery.

I did a pelvic MRI last month which showed "healing sinus tracts" in the genital area. This seems to validate the pain and swelling I've had in this area since my symptoms started in this area about nine months ago.

At the moment, I'm working with my gastroenterologist to find a diagnosis.

At a recent appointment, he discussed my symptoms and the MRI results, he told me he was 90% certain it's perianal Crohn's disease.

After reviewing my results with the radiologists, my surgeon and doctors at clinical rounds, he called me a week later to say he couldn't make a certain diagnosis.

He's referred me to a gynecologist who specializes in female genital diseases. I don't know if this doctor specializes in genital complications of perianal Crohn's disease.

I'm wondering if anybody has had a similar experience and if they can recommend a specialist who deals with what I'm guessing might be genital or metastatic Crohn's disease and what treatment you've taken to help it.

Thanks for your help!

JaSanne

Veteran Member

Joined : Oct 2006

Posts : 2086

Posted 10/14/2014 5:20 PM (GMT 0)

Hi Gidget,

There are a number of us out there with fistulas, and they can tunnel through in many places including the genital area. I've known of one patient with fistulas coming out of both hips. The one I still have is recto-vaginal, and it's extremely low in both the anal/vaginal sides. One reason I still have it is that although it's healed but open, my doctors decided the risk of incontinence and nerve damage was too great. I don't have much drainage from it any more as it's really tiny; it's mostly a "gas" issue.

Did you already have a Crohn's disease diagnosis prior to the fistula diagnosis, and do you have other symptoms of the disease? Probably finding a good GI who is knowledgeable in inflammatory bowel disease is the best thing to go for, but that may be a challenge depending on where you live. The area I live in has few such GIs. But your current GI may be adequately informed, but just being truthful because sometimes, they just don't know for sure

Crohn's can be difficult to diagnose. But having the type of fistulas you're describing would surely make it suspect. Other than a complication of a difficult vaginal delivery, which would not show disease, I don't think there are many other causes.

Hopefully someone else out there can help you better than me, but I just wanted to welcome you.

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