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_______________________ Amanda’s Story My pudendal nerve problems began immediately after a vaginal hysterectomy in March, 2003. This surgery included a pelvic floor repair, bladder repair and right ovary removal. Immediately following my surgery, I felt a burning fire in my perineum, urethra and could not sit at all without feeling like I had a red hot poker inside me. My right hip was also very painful and lying on this side caused extreme pain and pulsing; my bladder was totally irritated despite no sign of infection. I left the hospital and rested at home, but was at my general practitioner’s office within a few weeks complaining of increased pain and being unable to sit. I was admitted to another hospital and had many consultants looking after me, including an endocrinologist, rheumatologist, neurologist, gynecologist, pain specialist, and an orthopaedic surgeon. I had many diagnostic tests including MRI, mammogram, blood work, x-rays and several different caudal nerve blocks, facet joint blocks, and intense physiotherapy. _______________________ Jeana’s Story To me, pudendal neuralgia is a little understood disease with a potentially devastating impact to its victims. As a sufferer, I understand firsthand the destruction this disease can cause. I, like most, went from being an active person (a mother of four with a full time job and many volunteer commitments in the community) to being fully disabled. For a long time, I spent most of my days in bed, thinking about what my life once was. I could not even go to the grocery store alone. My thoughts went from ‘what are we going to do this weekend?’ or ‘where will we go on vacation this summer?’ to ‘I wonder when I will be able to take my children to the park without misery, to go to my daughter’s gymnastics competitions and sit with the other parents, to carry my toddlers?’ I missed my friends. I missed being intimate with my husband. I still do…. When I was at my worst, a good day was making some small contribution to my family, maybe just helping make dinner. On the worst days, I would lie in bed, thrashing; trying to find the one position that would give me enough relief to rest and think of something other than the pain. I had become completely dependent on others for the smallest of things. _______________________ Violet’s Story Weightlifting and exercise are supposed to be good for you, right? So what could be better for keeping you young and fit when you turn 46 years old than to start working out? That’s what I used to think. A couple of months into my weightlifting program I noticed some twinges of pain that felt kind of like a toothache in the right posterior vaginal wall. My doctor passed it off as hemorrhoids so I thought, "OK, lots of people have hemorrhoids so I’ll just live with it." Over the next year the pain became more persistent until I had to stop the exercise program and start the seemingly endless search for a doctor who could provide a diagnosis. Finally the pain became knife-like with diffuse burning and pelvic floor muscle spasms, forcing me to lie down most of the day. Except for my religious faith and my love for my family I had no reason to live. _______________________ |
