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Jeana’s story (continued)

My journey began with a vaginal hysterectomy.  I woke up from my surgery and had incredible pain.  I thought my tailbone had been broken during the operation.  Two weeks later, I was still in severe pain and was walking with a limp.  My right buttock had a constant cramp and was very sensitive to the touch.  My surgeon, Dr. Mark Conway, knew this wasn’t normal but wasn’t sure of the cause.  He was determined to find an answer for me.  He sent me to local “experts”, but after more surgeries by physicians that thought they knew how to treat me and many procedures at pain clinics that did not understand the disease (some resulting in serious complications), he finally decided to find the true experts in this field.  He talked to physicians around the world to find an answer for me.  I began a series of nerve blocks and physical therapy.  For me, the conservative therapies did not work; the nerve blocks (8 of them) did not provide more than 6 to 8 hours of relief and physical therapy was too painful to be of any assistance. 

We researched surgical options and finally decided on a trip to Aix-En-Provence to Dr. Eric Bautrant.  He and Dr. Eric deBisschop diagnosed me with a unilateral pudendal nerve entrapment in two locations; at the falciform process and at Alcock’s Canal.  That same week, April 25th, 2005, I had my decompression surgery and began my road to recovery. 

Like many, I did not improve right away, but gradually things got better.  I did not have much physical therapy immediately following my surgery because I was emotionally just too tired.  This has prolonged my recovery, but I just didn’t have any more fight at the time.

Now, I am getting better.  I go to physical therapy twice a week and continue to see my pain physician (a knowledgeable one).  I am still disabled, but at least now I go to the grocery store with my son and it doesn’t result in two days of pain.  I can get through my days at home taking care of my own needs, without the pain worsening to the point where I cannot move.  I still have a long way to go and much more physical therapy, but I have hope.  I know that if I can strengthen my pelvis, I will improve even more.  I know that if I can continue to deal with my physical therapist releasing the muscle spasms in my pelvis that seem to be everywhere, I will get even better.  It has been a long road but I feel like I have turned the corner and now it is just a matter of time until I am back at work and making cookies for Friday’s PTA meeting. 

I am lucky.  I have the support of my family and friends and wonderful physicians and this, in turn, gives me the strength I need to go on.  Some of you reading this may feel like I am anything but lucky, I got this horrible condition and still am not “cured”.  Others may feel pity, for me and my family.  And yet others will feel like I am telling their story because they know the road I have traveled.  To those people, my wish is that this story leaves you feeling hope.  It is possible to win back your life.  It may take a while, but it is possible.

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