Here is my story about living with a recto-vaginal fistula

Welcome !  I was inspired to start this blog after undergoing my 4th surgery attempt to repair my recto-vaginal fistula that I have been living with for over 10 years now.  I had so much hope that this would be my last surgery to end this nightmare.  After two weeks of promising recovery my fistula symptoms slowly returned.  It is now May 2016, two months after my March 2016 surgery.  My symptoms are fully back, if not worse then before surgery.  I am devastated but determined that I will have this repaired!  I am tired of sitting in silence with this condition and am therefore reaching out to tell my story with the hopes that this will be a place where women can come and share their stories too.  Please treat this as a space to share knowledge, to tell your stories, to shed a tear, to gather resources and to feel safe to be open because we are all united through this condition.  Knowledge is power.

I will now share my story.  Please feel free to leave me a message below or send me an email: mylifewithafistula@gmail.com

I am a 31-year-old Canadian female that has been living with a horrible, debilitating medical condition known as a recto-vaginal fistula (RVF) for the past 10 years. It has been determined; this was likely the result of a collapsed Bartholin gland following a Bartholin cyst surgery, when I was 18 years old.  Words truly cannot express how this seemingly small hole has altered my existence for the past decade.  I have been living with this condition for so long, that I have forgotten what it is like to have a normally functioning body.  The symptoms of a RVF are present every day of my life and have affected me greatly, both physically and emotionally.

When I was 18 years old, the Bartholin gland on the right side of my vagina became clogged and consequently swelled up to the size of a golf ball and burst open. The pain was excruciating. Surgery was then required to prevent it from swelling up again.  The following 3 years were marked with great discomfort and inflammation in the area as different doctors tried to understand why the area was not healing properly.  I was 21 when I noticed the first symptoms of the fistula which was gas passing through my vagina.  You can imagine my mortification as a young 21 year old in a relationship trying to explain this strange, unexplainable symptom to a partner.  For the next 3 years, I was subjected to an endless round of visits to doctors and specialists, who were unsure what to do with this strange, un-diagnosable problem except to put me on a cocktail of antibiotics and other pharmaceuticals.  At the time I was trying to get through University. The stress of my poor health took a huge toll on my ability to function in school and in my personal life.  My hair began to fall out, my iron levels dropped and I started to develop major food sensitivities which have majorly affected my intestinal tract.  I developed chronic bladder and yeast infections.  Sexual intercourse was painful and contributed greatly to the bladder and yeast infections. It was not until I was 24 that the fistula was officially diagnosed. By that time, I had seen more medical personal then some people see in their life time and it was just the beginning of my journey.  After undergoing a colonoscopy to examine my bowel, a specialist was able to confirm that I indeed had a fistula and in turn recommended me to a surgeon who he felt could operate on me.  What I didn’t realize at the time was how crucial the initial operation was for fixing a fistula.  In 2005, I underwent my first operation for fistula repair.  The operation was called an advanced flap replacement.  It involved detaching sections of my rectal muscles and sewing them over the fistula opening.  The post-op recovery was one of the worst ordeals I have been through to date.  I had no idea at the intensity of the invasiveness of the surgery and how hard it would be on my body for recovery.  The surgeon did not adequately prepare me in any sense of the word.  I became constipated for 5 days following the surgery due to the drugs prescribed for pain management and consequently blew out the surgery due to the amount of backed up feces.  The following weeks were marked with blood and fluids coming from my rectum, plus a yeast infection from the antibiotics.  I also developed an infection in the fistula area.  My rectal muscles were forever mutilated and scarred and have resulted in fecal incontinence.  The fistula was now larger and more pronounced than before.  I felt defeated, sick and helpless.  A tearful visit back to the surgeon resulted in him telling me that he could not do anything further to help me.  It was at this point, I realized I needed to take matters into my own hands and so I researched who was the best gynecologist in my province. I was able to find a highly reputed rectal / colon surgeon who, to this date, has performed two minimally invasive plug surgeries on me.  Although they have both failed and left me back at square one and wondering if I will ever be rid of this condition, they have not compromised my health majorly.  My surgeon, however, is now proposing a radical surgery as a last ditch effort to fix the fistula.  It will involve removing the gracilis muscle in my leg and interpositioning it between my vagina and rectum to create a wall.  I was shocked to learn about this surgery and it’s seemingly archaic techniques.  The worst part, however, is the diverting stoma.  They are proposing to cut into my perfectly healthy stomach and divert my intestines into a bag which I will have to use as toilet for the next 6 to 12 months.  I will carry a large scar down the length of my leg and be missing a muscle in my leg for the rest of my life.  I will also have my perineum sliced open and patched up again.  The repercussions from this surgery are endless.  My life as I know it will stop for months as I recover from this intense, mutilating surgery.  I cannot even begin to imagine trying to live the normal life of a 31 year old for the next 6 to 12 months with a bag of feces strapped to my side.  After hearing this proposal, I knew that I must find another less invasive option.  I have been recovering from my 4th surgery for two months now.  On March 2016, I underwent a minimally invasive, 1 hour trans-vaginal surgery with a highly reputed surgeon in California.  I had a very promising two weeks with no symptoms.  Shortly after two weeks my symptoms started to return.  The fistula is back.  I have no idea why the surgery failed.   I have had the misfortune of being subjected to years of discomfort, pain and suffering and much of it preventable had I known what I know now about fistulas.  I will never get to experience my 20s again as a normally functioning female and I am terrified to think about the long term repercussions of living with a fistula.  Although I am devastated and grappling with the grief of having gone through yet another failed surgery, I more determined than ever to have this repaired.