Health Organization for Pudendal Education

I was diagnosed with non-bacterial prostatitis twenty-five years ago. I went to several urologists over the years and never received any treatment or information of value. Eventually I dismissed the diagnosis of prostatitis as meaningless; it is just a name urologists give to symptoms they are unable to effectively treat. In 2006 I started to feel numbness in the rectal area from sitting too long at work. I read various stuff on the internet that led me to an appointment with Dr. Antolac. He diagnosed PNE and did a series of four nerve blocks. They had no therapeutic value for me. I am lucky because instead of the chronic pain most PNE patients have, my symptom is numbness in the rectal area. I decided against surgery after reading many stories online of people with bad outcomes. I am a biologist and after studying the surgery decided the risk was unwarranted. So I took Dr. Antolak's self-care advice and for five years I have not sat down. I stand, lie down or kneel. I only drive minivans and created a contraption for my captain's seat that allows me to "sit" on my thighs with my body angled forward; it works quite well. I have callouses on my knees from all the kneeling I do. I have no doubt the diagnosis of pudendal nerve neuritis or entrapment is accurate. When I first saw Dr. Antolak my most uncomfortable symptom was the foreign body symptom. I told Dr. Antolak it felt like I had a wad of cotton stuffed up my rectum. After five years of never sitting my symptoms are better. Not sitting has had a positive effect and I rarely have the foreign body in rectum sensation but I still feel numbness nearly always. Unfortunately bending over also aggravates my condition and I am less vigilant about not bending over. However, there are many days when my symptoms are minimal.

In addition to the foreign body feeling I also have a constellation of urological symptoms including weak urine stream, weak semen flow, occasional pain after orgasm and erectile dysfunction. Since I also have peyronie's disease (curvature of the penis) it is unclear whether my erectile dysfunction is a symptom of PNE or not. Anyway, I have come to accept all of these symptoms and while not happy about them, I know things could be much worse. I can also say with confidence that the urological symptoms have also improved after not sitting for five years. One thing I have definitely noticed is I rarely need to get up during the night to urinate. Also the painful orgasms have gone away. (I am able to have orgasm despite the erectile dysfunction.)

I intend to continue my "self-care " as Dr. Antolak calls it and hope that with more years of not sitting my symptoms will continue to improve.

I read the book a headache in the pelvis as well as the bad experiences many have had at the authors' "paradoxical relaxation" clinic. I believe the Wise Anderson treatment is valueless, however, after reading the book I did become aware that I definitely tighten my pelvic muscles when I become anxious. So I believe there is a small kernel of truth in the book's thesis. So I do try to be aware of the tension I create in my pelvic area and relax the tension when i feel it.

That is my story.

Pompei, thanks or sharing your story. I agree with you that if you can develop a coping lifestyle without too much discomfort, avoiding surgery makes a lot of sense. It can be very difficult if your job requires a lot of sitting and like you say, other areas start to complain including your knees if you kneel a lot. Good for you for keeping a positive attitude despite your limitations.

Violet

I am retired now and do not have to work, so it is easier to make the life style changes. I am going to do some experimentation with exercise too; I joined the YMCA and do mostly upper body conditioning. This site is great and there is a lot here to explore. I suspect other nuggets of wisdom are here somewhere ready to be found. Already I am much better informed in just a very short time. I have searched medical research myself now and then over the years but see new stuff here I've not come across before. I have accepted my conditions for several years and it helps greatly that I experience numbness rather than chronic pain. I can only imagine how frustrating it must be to experience pain every day.