Pudendal Nerve Damage
3 replies to this topic
Posted 21 February 2008 - 08:59 AM
Posted 26 May 2009 - 05:35 PM
Hi! Ues, I have been diagnosed with Pudendal Nerve Damage, or PNE, how can I help you? Are you male or female, and have you found a specialist?
Posted 26 May 2009 - 06:12 PM
I am new to this site, and I'm not sure how you reply with questions regarding your need for help or answers. Does it go to your e-mail address stating you have a reply? I will check back in a day or so, to see if you have sent another message, but since you asked the question, I am assuming you have recently been diagnosed, or wondering if you have the disorder. First, diagnosis is very difficult for both males and females. I even went through a radical hysterectomy and cancer debulking surgery, which obviously did not solve the problem, and after the year following my surgery and many visits with specialists, I was finally diagnosed by the Bronco's Rehabilitation Center in Denver. I have a background in research; so, I had already suggested I had the disorder from the onset, but it took specialists a very long time to realize my self-diagnosis was correct. Very disapointing to me as the radical hysterectomy virtually ruined my life. My background, at the time of diagnosis I was in my late 30's and was extremely athletic, skiing, hiking, cycling, running, and co-ed sports prior to having children. I had twins, and my pregancy was high risk. During myl late months, I had groin pain and pain shooting down my right leg, but it cleared after giving birht. Our third child came along 3 years later, and during my preganancy I had a cerclauge, and did not obtain the feeling back in my right leg for days, and when it returned, I was in agony. My Perinatologist(s) thought the pain would subside after birth, but it only became more unbearable. My right lymph nodes were givng me problems, and they measured over 3 cm, which indicated it was time for a biopsy, which was the biggest mistake of my life. I knew they were wrong when they came back saying that I had a low grade sarcoma, but after losing many friends and relatives to cancer, I went through with the surgery. They did find a contained tumor, but it was very small, and certainly not the source of the chronic pain problem. Thankfully, I had a tumor board collaborate prior to my surgery, and a brilliant surgeon known for attaching nerves following severe accidents was present, and he suggested the issue with the right side was related to my pelvic nerves. By that time, I had already discovered the disorder, but had a difficult time convincing specialists that a lay-person can often diagnose themslelves. Long story short, I searched until I found a clinic to diagnose me, and then followed-up with Dr. Antolak in Lake Elmo, MN. He truly is the best in my opinion, an wonderful bedside manner as well. If you have any questions or concerns regarding the disorder, you can find many of his papers, articles, and web-sites on the computer. My understanding that he was the lead specialist at the Mayo, retired, and then opened his own clinic in Lake Elmo. Since I've been treated, he has sinc moved to another pain clinic, which is wonderful as he's passing on his skills and knowledge. If you think you have PNE, read articles from the web-sites, for me, I had chronic pain on the right inside of my thigh along the bone, and stretching down into the thigh. I also felt extreme pain in my rectal area, which felt like a ball, and in my thigh, ,I felt as though I wanted to rip out a section inside the right side of the inside of my vagina. I can not explain the agony I went through or continue to experience. Friends, family, and jsut about everyone I know can not possibly understand what I, or others go through. When I first read one article published by Dr. Antolak, I my eyes welled with tears, it was written by a doctor who had been a cyclist, and he said the pain was so bad at times that he was suicidal. When I had my husband read the article, he finally began to understand what I was going through. Believe me, I am one tough cookie when it comes to pain. I never flinched during childbirth with twins, or with our thrid child, but this has brought me to my knees many times. I think that is what both men and women most want others to understand, is truly how much pain each of us are trying to endure each day, and how very little there can be done. I was once surrounded by a very large network of friends, but I just couldn't keep up with my life, and one by one, I pushed them away because I just couldn't stand canceling on plans and obligations. Even with help, PNE is overwhelming. I hope wherever you are in your diagnosis and treatment, you will touch base with me. I have never gone through a support group; so, it would be nice to have another person, male or female to compare notes. Sincerely, Ljr