The Road To Instanbul, Turkey

Exactly one month from today I will be in Istanbul Turkey for what I hope will be a life changing surgery. How I got here you might ask, well let me explain...

      It all started with a very routine surgery on Feb 10, 2011.  A type of surgery that is performed on a regular basis in the United States everyday. I went in for a hysterectomy for prolapsed uterus, and also a cystocele and rectocele repair. What is that? ( Click Here prolapsed uterus, cystocele,  rectocele )

     After waking up from surgery I was experiencing tremendous pain, which the nurses all assured me was completely normal. "You just came from surgery" they said. Although the pain medicine they gave me seemed to be doing very little to help, I believed them and did my best to deal with the pain.

     I came home after 4 days which is standard for that procedure, I spent all of my time in bed wondering if what I was experiencing was normal and waited for my two week post-op appointment. At two weeks I was unable to sit or stand, the only comfortable position was laying down. Unable to drive, I had a very kind neighbor and friend take me to my appointment, we had to recline her front seat all the way down and I was still so uncomfortable. At my doctors appointment he explained to me that I had a large repair done and to give it a couple more weeks.

     I then went in for my 6 week post-op appointment, and I still was unable to sit at this time. My doctor said that I likely have some "extensive nerve damage" and that nerves will repair themselves, "it will just take some more time". He asked me to make another appointment for 10 weeks, which is not standard.

     At 10 weeks post-op I returned, and it was still very painful to sit. I told my doctor that I thought something was left behind during the surgery, because it felt like when I tried to sit that I was sitting on something. He said that it was very unlikely, but for peace of mind he ordered an x-ray to check for any sponges that may have been left inside. The x-ray was negative. He asked me to set up an appointment with his colleague, another doctor in the same office, who had more experience with pelvic surgeries to get a second opinion. His colleague thought maybe it was a hematoma, and sent me to have a CT, this came back negative also.

     After these scans, my doctor recommend that I find a neurologist. He gave me some names which I called. I quickly found out that neurologists are unable to help someone with nerve issues in the pelvic area. I called back to his office to explain my frustration and they gave me some names of top neurologists in our area, after making some more phone calls, I learned that they could not help either. I did not understand, "I have nerve damage, why can't a neurologist help?"

     At this time, I am about 14 weeks post-op and I still had very little improvement with sitting and pain, I was not sure what to do. I am starting to feel extremely helpless, so I decide to seek another opinion from a different team of OB-GYN's. I scheduled an appointment that was three weeks out, which was for the first week of June. At that appointment, the doctor almost immediately diagnosed me with a condition called Pudendal Nerve Entrapment (PNE). I told her "it's been 17 weeks, shouldn't the nerves be getting better by now?" With very sympathetic eyes she replied, while nodding her head back and forth, "Oh no, it's going to be years. There is no way to fix this condition, only ways to help manage the pain."

This is how my journey began...
Only I had no idea that searching for relief from this debilitating and rare nerve condition would ultimately lead me half way around the world to Istanbul, Turkey.