Personal StoriesViolet'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. My chiropractor "fired" me because my pelvis was so unstable it wouldn’t hold an adjustment for five minutes. My physical therapist (my second one), a pelvic floor specialist, pressed on the pudendal nerves and said, "It looks like your worst pain is right on the pudendal nerves." Talk about a pain flare afterward – it was so bad my physical therapist wasn’t sure how to proceed during my next visits. My pelvis was so unstable she was shocked and said, "I’ve never seen anything like this before!" After seeing that physical therapist, I googled "pudendal nerve" and read for the first time about pudendal nerve entrapment and pudendal neuralgia. As I read I kept saying over and over again, "That’s me! That’s exactly how I feel! This is not all in my head!" With only minor, temporary improvement from physical therapy and nerve blocks I was faced with the decision of whether to lie in bed indefinitely or go for pudendal nerve decompression surgery. Due to the chronic strain and laxness in my pelvic ligaments I did not feel comfortable with the transgluteal approach that severs the sacrotuberous (ST) ligaments. My research led me to the conclusion that the ST ligaments are important in pelvic stability, specifically in preventing excessive rotation of the pelvis. I opted for the trans-ischio-rectal (TIR) approach because it spares the ST ligaments. My surgery was three years ago in Aix-en-Provence, France. I had six points of entrapment – bilaterally at the ischial spines, falciform processes, and Alcock’s canals. The sacrospinous ligaments were very hardened and had to be completely sacrificed on the right and partially on the left. Dr. Bautrant was unable to achieve a normal PNMLT during surgery, possibly because the myelin sheaths of the nerves had been damaged. The first six months of recovery were quite painful, to the point where I wondered whether I had made the correct choice regarding surgery. By the ninth month I experienced significant improvement in my pain and activity levels. Now I am completely off of narcotics and I can be up and around most of the day doing light housework, gardening, and other activities I used to enjoy. I have to be careful not to get too rambunctious or to sit too long, but my quality of life is about 75% better than it was before surgery and I am extremely grateful to the physicians who have helped me get back part of my life.
Wendy’s Story At the age of 31, I started to try and start a family with my husband. My first pregnancy was an ectopic pregnancy. I finally got pregnant at the age of 35. Me and my husband were so excited. What an amazing experience. The whole 9 months of my pregnancy felt almost like a small miracle. I never had any type of pelvic pain whatsoever, either prior to my pregnancy or while I was pregnant. My son was finally born in January of 2005. I had 2 epidurals for the pregnancy and he came out at 9lbs and 3oz., after 3 ½ hours of pushing. I had 138 stitches, for this vaginal birth. My first symptoms started, right after I gave birth, while still under the anesthesia from the epidural. About 5 minutes after he was born, I felt this very sharp and intense pain in my clitoral area. At this point, I knew something was wrong, but being my first child, I thought it could be normal. After the epidural wore off, I really felt the pain. Not just your typical pain, but really severe vaginal/clitoral pain. I also had hyper arousal symptoms, that I could not control. The hyper arousal would stay for most of the day and become extremely painful. All of my pain was only on my left side. I also had some minor tailbone pain. The last symptom that I had was these “electric shocks”. I have them most of the day, minor ones, but sometimes, they come on very strong and actually make me loose my balance. After 9 days, I called my OB/GYN and told him about the pain, he said it should “go away”. At my six week checkup, I again told him of my pain. Stating that I could not even walk to my mailbox, to get the mail and when the wind blew, it caused more severe pain. After a quick exam, he said “call me in 3 months, if it does not go away”. He said, “I don’t need to see you, because I already know you have pain”. I was devastated. During this time, I made an appointment with a vulvar specialist. It was at this time, I really understood how much pain I really had. One touch with a QTIP, sent my flying off the table. Well, I tried several medications, your typical tricyclic antidepressants and some anticonvulsants. I tried physical therapy, biofeedback and everything else. Finally, I found out about the “pudendal nerve”. It was then, that I decided to have some nerve conduction tests done. My left side was abnormal, which is where all my pain was, and my right side was normal. I decided to meet with a wonderful PN doctor. His name is Dr. Conway. After an EMG test and a vaginal/rectal exam, he felt that I might have a pudendal neuropathy. I decided to have the pudendal nerve blocks done in 2006, which gave me a very short term relief of my symptoms and confirmed that I did indeed have a pudendal neuropathy. After another year, I finally decided to have surgery in Sept. of 2007. Currently, there are days that I feel great and there are days that the pain still flares up. It is now approximately 9 months since my surgery with Dr. Conway. I still have electric shocks, but those have started to diminish. The one issue that I had that has almost completely gone away since my surgery is the hyper arousal. The hyper arousal symptoms, for me were worse than the pain. I can say that my tailbone pain has increased since my surgery, but I am hopeful, that it will start to dissipate as well as time goes by. I can’t say enough about the doctors who treat pudendal neuropathy. To finally meet with a doctor that understood my issues, had empathy for my issues and was willing to treat my issues, gave me so much hope. I went from being suicidal, to having hope and a plan for treatment. I am still in the “recovery” process, which could take up to two years. I have faith that with some of the positive aspects of my surgery, most specifically, the hyper arousal, that other symptoms will also begin to dissipate with time. Wendy
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