Health Organization for Pudendal Education

Hi All
First off, a big THANK YOU to the community. I have been a visitor to this site over the past 4 years and learned a ton. Now I have come to the point where I need specific advice from people who are not my wife.

HISTORY
I have been overweight my entire life. In 2010 I lost 140 lbs and took up the sport of road cycling. Wow. I loved it. There was nothing better than spending a day on my bike just out riding and seeing the world. On top of that it was a great way to help manage my weight. I started doing century rides (100 miles) and loved them. I had no problem chewing up the distance so in May of 2015 I decided to do my first Double Century, which is 200 miles in one day on the bike. It is important to know that I was in great shape and did the appropriate training for the ride. I was on that tiny hard bike seat for 15 hours. I finished the ride and felt great, sore, but great. I did not know that on that day my life took and absolute turn for the worst.

About 3 days later I began to experience tremendous pain in my groin, scrotum, and abdomen. In 2008 I had been diagnosed with testicular cancer (Lance Armstrong and I have two things in common!) so when I get pain down there I tend to flip out. I went to my primary care doc, called my oncologist and emailed my urologist. All said that I did not have cancer, but probably prostatitis. I was given pain meds and antibiotics. This did nothing and went on for 6 months. I finally said “I have been reading and based on my symptoms and the fact that I was on a bike for 15 hours before this happened I bet this is ‘Cycling Syndrome’ and something to do with my PN”. They said your right and sent me to a neurologist who said “sounds good to me” until finally I ended up at a pain management dr. We talked about medications I could use, but, and this is very important, I was very concerned about the ones that cause weight gain. I had worked hard to lose the weight and my big fear was that I would gain it back. So we stayed away from some of the more common choices at first. Here is a list of all I have tried:
1. Topimax
2. Mexiletine
3. Lyrica
4. Butrans Patch
5. Nerve block (3 PN and 1 spine)
6. Methadone
7. Norco 5
8. Norco 10
9. Gabapentin (just started)
10. Oxy 7.5

Through this I have also been on Effexor because, as you all know, this has a tendency to wreck your life and make you one of the most sad and miserable people. When I type out this list I think “wow look at all the narcotics I have been on. This is no way to live”. In case you are wondering, I have gained 110 of the 140lbs back.

All of this is what brings me here today. I have a wife and 2 kids and I have been very “fiscally responsible “ as I have dealt with this and only dealt with people in my insurance coverage, but the problem is I am not getting the results there and I cannot live my life like this. I need to do something different. I need to get off the drugs, manage the pain and get my old life back.

I live in the San Francisco Bay Area so I am looking for any advice on doctors, physical therapists, or therapists in California that people feel could help. I am also looking for new treatment ideas, medications, or procedures to suggest or try. Anything you all have in that world of knowledge of yours would be so greatly appreciated.

My family left yesterday for a camping trip that we have done every year for the past 15 years. This is the first year I could not go because I am too much of a wreck right now. I don’t want this to happen again.

Thanks for reading and your help!

Welcome Fonis,
I am so sorry you have had such a journey. Losing weight and having the process causing you pain. I recently gained weight I think from meds and don't know that I can lose it. It is frustrating. Anyway there is help from PT in your area, see the home page list of PTs, pelvicpainrehab.com. Best of luck.
Janet

Often pudendal neuralgia develops as a result of a combination of things happening through your life. I don't know what type of treatment you had for the cancer but I was wondering if it might have been an important factor in your history if it possibly caused scar tissue to form so that when you took the long bike ride you had already been set up for problems. I think it's important to figure out the underlying cause of nerve irritation -- whether you have scar tissue from a previous surgery or residual problems from radiation, or whatever treatment it was you had previously so that when combined with the long bike ride it was too much for the nerves to handle. But you would also want to try to figure out if you have any ligament involvement that could be causing irritation to the nerve. There are different root causes of PN and I think it is important to figure out the root cause in order to find the right treatment. You can mask the pain with medications, etc. but that obviously isn't working very well for you.

The more diagnostics you have have from things like PT evaluation (and how well you respond to pelvic floor PT), MRI/MRN, diagnostic nerve blocks, etc., I think the better picture you will have of what is really going on.

I'm sorry you didn't get to go on the camping trip. I had to miss some family stuff too when I was going through PNE so I understand how difficult it can be. Please keep fighting though because with the right treatments I believe you can get better.

Violet

Hi Fonis
I live in Santa Rosa. I have had this condition for the last 24 years. I am 64. Nothing I have tried worked for me.
That does not mean something won't work for you. You are welcome to call me. I am not sure how to give you my
phone number without others getting it. I was advised not to give it on website.

Ray
I got it from riding bicycle also.

I sent PM