Health Organization for Pudendal Education

Hi all, I'm in the DC/NoVA area, I've been reading this board a while and this is my second posting. I have damaged pudendal nerves thanks to six months of bike riding on a more forward-positioned bike after riding a hybrid for one and a half years. I'm morbidly obese and I had taken up bike riding for fun and exercise, and I was getting to the point of riding ten and twenty miles at a time to build endurance and burn calories. Unfortunately, I was putting a lot of pressure on my nerves and also when I was tired, I was banging myself in the urogenital area with the bike seat sometimes when getting on and off the bike. I had pain and also arousal symptoms sometimes after riding but always figured it was temporary. Pain is weakness leaving the body and all that, right?

Then an accident wherein I banged my vulva/clit into the seat really hard before getting thrown to the ground made me take a couple weeks off of riding. To my distress, the pain didn't go away as I always assumed it would. So here I am, a year plus later, still dealing with nerve pain. The arousal symptoms have lessened over time, though.

I've gotten standing desks, used ice packs, gotten bupivacaine/steroid injections from a local urologist, which all give temporary relief, but nothing lasting. Sexual intercourse is extremely painful, sitting for long periods is very uncomfortable, even lying on my stomach is painful. I'm now looking into ablation procedures or even decompression surgery. Oh, and I just started gabapentin. Fingers crossed that gives me a little more relief.

Puffsplus,

I am sorry you are going through this situation! Have you had an MRI yet? My doctor says always stimulate before you operate. I just wanted to share that you. But, please don't make your decision based off of what my doctor says. Do what you and your doctor feel is the best and follow your gut.

Do you attend Physical Therapy?

Hope

My doctor says he thinks I should get a second opinion. Now I’m seeking more intensive treatment from someone else who will take me on as a patient. I have an appt with a local gyn in Nov, but I’m also considering flying to Seattle or Phoenix if one of those docs will take me on. No, I’ve not had an MRI. Just started Gabapentin.

Hi!
First you need to know what is the reason for your problem. Do MRI and X-ray(but not the regular X-ray) and search for more doctors to see those , because from 3 doctors you may get 3 different diagnoses . Maybe is sacrum or pelvis problem.
https://www.youtube.com/watch?v=MWlGszPkAhY

This guys is amazing. Everyone can learn a lot from his lectures. If i was from USA or had a chance to go there was gonna visit him 100%.
In this video he tells something about the MRI's and X-RAY's.
Good Luck!

Hi Puffsplus,

I agree with Hope's suggestion that maybe trying PT is an option to try. Especially before surgery you want to know if there are any underlying musculoskeletal issues that need to be dealt with.

Violet

Exactly what does physical therapy consist of? My husband gives me massages using his fingers just to press on and rub on my vaginal muscles. He can feel the tightness in my pelvic floor, and so he massages it out. He also massages the anterior vaginal wall. Quite frankly, the only way we can have sex is if he massages me like that (it's our "foreplay" now), and intercourse still hurts. Without the massaging, though, trying to have sex with penetration is absolutely excruciating. Even so, too much massaging and it makes things worse.

Nobody has ordered an MRI for me thus far, so I'm not sure who would do that.

A PT evaluation would tell you if you have musculoskeletal anomalies like SI joint dysfunction, pelvic misalignment, posture problems, etc. that might contribute to having a tight pelvic floor. Myofascial release like your husband is doing can be helpful but it won't necessarily fix mechanical problems.

Your GP can order an MRI -- or any of your specialists. Since you are on the east coast you could go to Dr. Hollis Potter in NY or to John's Hopkins for an MRN. The east coast forum members can give you more info on that.

Violet

Well, my GP refuses to order me an MRI. I've seen two physicians in my primary care group of late and both have been damn near useless. One I saw whom I've never seen before, and she was reluctant to order a pelvic MRI because she's never examined me herself, etc. OK, I can understand that a bit. But even my regular doctor refused. She wants the urologist I'd seen before to do any orders. I can understand why, yet it would be much more convenient if she could do it, just because she's so much closer. The urologist is 20 mi away and hard to get appts with. It was hard finding a doctor to see me with this problem anyway, and when I was unemployed, I could just get appts with this guy when they could squeeze me in middle of the day. The hour it took for me to drive there was no big deal.

But now I'm working, so driving a long way, and waiting a long time (he is really busy and so frequently runs late) makes it a bigger deal. I'd have to take at least two hours, probably three, just to drive out there. I love that Dr., he has been great to me, I don't have qualms about seeing him again in the least, but I just wish my GP were more helpful. She's literally 10 min away from me.

Dr. Attaman in Seattle/Bellingham, the guy I'm flying across the country to see in a week, feels that a neurogram (MRN) would be more useful anyway. So, no MRI for me, not for now.

Well, that's unfortunate that your GP isn't very helpful. There has been discussion on this forum in the past on the pros and cons of MRN vs. MRI. I'm not sure there is any definite conclusion as to which is better so if your only option is the MRN, I wouldn't feel too upset about it.

Good luck with your upcoming appointment.

Violet