Health Organization for Pudendal Education

Hi all,
This is my first post and wanted to get some ideas from some of you. I'm a 50 year old male in reasonably good health (til now). In my case I can't really say for sure but started noticing pain in my perineum mainly while sitting in the car sometime late last summer. It was very mild and didn't think much about it til probably October. I don't recall any specific accidents starting the pain but have had a couple of falls on the buttocks the last couple of years. By December the pain had become more noticeable and I consulted my regular doctor suspecting I might have prostatitis. The only symptom at that time was really just the perineum pain and didn't notice any urinary issues or pain elsewhere. I was put on a course of doxycycline and by late December the pain turned into burning in the anal area that prompted me to return to the doctor who took me off the antibiotic and she guessed I had developed a yeast infection. After a round of medication to clear the assumed yeast infection did no good I was referred to a colo-rectal surgeon who ordered a colonoscopy which only showed some very mild proctitits. That led to 6 weeks of NSAID's which did nothing for the pain much to the disbelief of the surgeon.
So by late February after much complaining about the pain, this doctor basically told me I should seek some counseling. I made one trip to see a counselor who immediately recognized I was really in pain and recommended I seek medical attention first. About the same time I happened upon some information on the web about PN and decided I should try to stop sitting. I have avoided most all sitting since March 1 except for riding in the car with a donut cushion and the last couple of weeks haven't been able to do that without pain in the perineum. I don't really notice pain much elsewhere but do have starting and stopping while urinating now. My biggest complaint is the awful pain in the perineum I get adjacent to the anus. Standing is better but I have some pain most all the time now and can sleep after lying down for awhile but don't really sleep very well.
I did get an appointment in mid-March with a physiatrist who is an MD that treats back injuries and he suspected coccydynia. I had just started trying some Amytryptyline a couple of weeks prior to seeing this doctor but he took me off that and put me on Baclofen. I didn't really notice any relief with the baclofen but he still has me on that. He also tried a ganglion impar block a week ago but i noticed no change with that either. Since I was still complaining after the block he started me on neurontin (3x100) about a week ago. He also had me get a pelvic MRI and he interpreted it as not seeing any pudendal nerve issues but I've read that an mri usually won't show those issues anyway. So starting to doubt this doctor too I contact Dr. Ken Renney's office in Houston to have a phone consultation and was sent some paper work and told to get a CT scan locally. That's where I'm at with things right now and not sue what I should be doing next. Should I seek some PT first before trying nerve blocks, etc.? I hate to delay and cause more damage and am very worried.
Thanks for any advice anyone might be able to give!

Hi and welcome to the forum.

I hate to see you go on a wild goose chase but my thoughts are that it never hurts to start with the least invasive therapies first and PT is typically considered less invasive than nerve blocks. You wouldn't have to commit to PT if you think it's not for you but you might obtain some valuable information by at least having an evaluation to see if your pelvic floor muscles are in spasm and to find out if you have any of the disorders such as sacroiliac joint dysfunction that so often accompany pudendal neuralgia.

If there's someone near you who is trained in treating PN patients, that would be great, otherwise you might be able to get a PT consult with Fatima Hakeem at the same time you go to Houston for the nerve block. That's something you could ask Dr. Renney.

Regards,

Violet M

Hi there, welcome ,
I can only echo Violets post. It can be such a run around especially when the 'experts'. . . . . aren't!
Arm your self with as much info from this site as you can. Have a look at the symptoms page and see how many of yours match. There doesn't need to be a 'full house' of course.
Maybe they were ruling cauda equina syndrome out with your MRI? but you are right an ordinary MRI won't show nerves, so I'm not sure how the Dr reached that conclusion.
Maybe you could add cymbalta to your medication as the combo of this 'antidepressant and the neurontin can work well. Maybe the neurontin could be titrated up once you become accustomed to the doses. I was on 2400 per day to get any good effect although less can suit a lot of people.
The other thing to say is that nerves can heal but it is still a lot better to get well targeted treatment sooner than later of course.
Take care and good luck
Helen

Thanks so much for the replies. I went back to the physiatrist today and he upped my neurontin dose and gave my a prescription to try the amytryptyline again. He wanted me to try PT here locally too but I'm concerned because they're not specifically trained for pudendal issues but he thought it wouldn't hurt to have them at least try to evaluate my pelvic floor muscles and try some relaxation techniques. Not sure what that entails but I'm willing to start there if it helps. This doctor is aware of pudendal issues, he just doesn't have much experience with them. But he did agree to give my any referrals I might need and try to work with me to help if he could which I appreciate. My other problem is I'm in southeast Kansas so there's really no good medical centers close by without a lot of travel so even finding an experienced PT is difficult. He mentioned that I could get a pudendal nerve block at KU med center in Kansas City but I'm nervous about whether they'd be skilled enough there for that. He did seem to think there was a doctor there that had dealt with some pudendal issues but can't remember the name he gave me.
My worst limitation right now is I'm having a hard time finding a way to make the 20 minute drive to work for my IT job. I had been getting by with a modified donut cushion with the front cut out for the last month but that started giving me pain back in the perineum while sitting on it so I've been trying to work from home the past week or so. Seems like my perineum isn't liking being suspended and I was sitting with my sit bones in the hole so they weren't really having pressure on them either. So not sure what would work right now. Bummer.

I have heard about people getting a standing workstation, or an adjustable one?? sorry have not seen one but I know they are out there. I'm sure that employers have supplied them too. Hopefully someone who knows about this will add a post or you could search for standing workstation perhaps.
Helen

Thanks for the standing workstation idea, I think I could do that if I could figure out a usable cushion to get myself into the car for the drive to the office. Also had a question about the pelvic CT scans. The doctor says I have to have one of those before going to Houston but that makes me nervous because of the high radiation levels in a CT. Maybe I shouldn't be worrying about that but he also said the MRI doesn't show nerves anyway so what's the value of having to do the CT scan. My local doc says he doesn't get that either since the MRI didn't show any problems so why do a CT too?

They're called "adjustable height" desks. They're great.

Carguy, if you are thinking of traveling to Houston, before getting a CT scan done you should check with the physician who is handling the new out of state cases coming to Houston. Check out this info that I posted yesterday: http://www.pudendalhope.info/forum/view ... =51&t=3329

I understand your concern about the radiation from the CT scan so think it through carefully and plan your course of action before agreeing to this. You may want to consider a 3T MRI using the Hollis Potter protocol that supposedly shows nerves, instead of a CT scan.

I wish I could help you out on the driving to work problem. Sometimes a different type of car seat helps but that's not an easy fix. I recently drove 5 hours straight in a rental car with no problems at all but my own car is not as comfortable.

Good luck!

Violet

Driving for me just turned out to be using a different cushion. The Togu Airgo was much better for driving than the cushions I made for other sitting. I hoped it would also be a replacement for the made up cushions but that did not work. Like everything else another trial and error until you get something for each situation. Best of luck.
Janet

That's interesting news Violet, thanks for the info! I'm not sure how that affects me because I had my initial phone consult with Dr. Renney last week and received some forms via TeleHealth from him so assumed I was going to see him if I went there.

Also thanks for the info on cushions, I'm trying figure out something that will work.