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Emma’s story

One of my Obstetric Fistula ladies recently underwent surgery #20 in the hopes of a repair.  This is her story and I thank her from the bottom of my heart for sharing it with us.

Emma – I first noticed a pea-sized lump on my perineum about 6 years ago. It seemed to come and go, but was never sore so I largely ignored it.

Then in May 2010, the lump became bigger and painful. I went to my local GP who diagnosed it as a Bartholin’s abcess and lanced it in his rooms. I remember him commenting on how deep it went but didn’t think much else of it.

2 days later, my entire labia swelled up as the infection tracked along the opening of the vagina. I had fevers and was very uncomfortable. I went to the emergency department and had it diagnosed as a labial abcess and this time had it surgically drained and laid open by a gynaecologist. Two weeks later, the original lump was back and I saw another gynaecologist who thought it was coming from the bowel. I was taken to theatre where a general surgeon found a hole in the bowel that was feeding the lump and flushed it with saline, declaring me cured.

Unfortuately in the course of this surgery, the lump opened up and stayed open, creating a true fistula tract. This was the first time I experienced the leakage of bowel contents out through the fistula. Horrified, I found the name of a new surgeon, Prof Carson, who performed a EUA and fistulotomy and diagnosed it correctly as a high, complex,. This first repair attempt failed and so started a long list of failed repairs.

I have had numerous fistulotomy, fistulectomy, advancement flap, labial fat pad grafts, anal sphincter repairs and seton placements. All failed. It was then decided to give me a temporary colostomy and try a repair then. I had the end colostomy for  12 months and each repair failed. I developed a parastomal hernia and kept getting partial bowel obstructions which were debilitating. The final straw came when I deveolped a parastomal abscess under my base plate and a reversal was performed. I am still upset that I spent a year of hell with a colostomy and it achieved nothing.

It got to the point when Prof Carson did not know what else to try and so he referred me to a CRS on the other side of the country. He performed 3 advancement flaps, the final one, in August 2013, has worked.

My total of operations on my bowel in the 3 years has totalled 20. It has been a long road. Constant abcesses and infections in the tract has kept me exhausted and the emotional strain has left me with severe depression. The financial toll has also been considerable. I am just lucky that I have a very supportive husband, family and friends who have supported me throughout the ordeal.

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2 comments on “Emma’s story

  1. I’m so proud Emma, to have gotten to know you, support you, and FINALLY, see you healed! It has been such a long road, but I never gave up! I KNEW one day we would see you healed! I am so VERY, VERY thankful!!!

  2. So glad to hear the words “has worked” You were the one who came to me, a very nervous new mum in the waiting room and pulled me aside to tell me all about fistulas and the fistula page. THANK You for being so open to me and for sharing your story! XOXOX Erin

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