Health Organization for Pudendal Education

Hello everyone,

(edited)
For the past six months or so my job changed from sitting and doing data entry, along with running around getting parts, etc. to strictly doing data entry 10 hours per day.

For the next five months I would get a sore butt, mainly on the left side. It would come and go and never stayed long. I would try to stay off of it more when I could, but figured it was just "soreness" like if you stood on your feet all day. I had never had a sit down/ office job and was very naieve. Eventually I began to feel as though there was a lump under my left sit bone and soreness on both sides. I switched office chairs which relieved the symptoms up until about five weeks ago. My new desk I got was lower than it should be, so I had to hunch forward and started getting mild tingling between my anus and penis and the sit bone pain re appeared.

I went to sleep and the next day I had the sit bone pain, an aching/burning/pressure between my anus and penis, rarely getting jolts at the top of my penis, numbness around my anus and tingling/crawling at my scrotum. I also used to get a pleasent sensation when scratching my inner thigh/groin when I had an itch and now it gives a burning pain when scratched even lightly.

It will be handled through workmans comp and I know it is a much milder case, but I would like it to be as close to gone as I can get it.

Currently I have the sit bone and perineum pain if i sit (which I havent in 5 weeks except to/from work on a pad), burning/aching and the feeling I need to pee when standing in one spot (which I do now), but I don't notice anything when walking or sitting on the toilet.

My only real "pain" would be the aching burn when standing in one spot to do my data entry. I also havent had any pain when sitting in five weeks because I havent sat down except briefly on a cusion. The day I felt the burning is that last day I sat down without my cusion.

I am hoping that because I stopped sitting on it when I first felt the actual pain that it stopped the damage and now it is just inflamed. I have read hundreds of posts on several sites and still am not sure what my course of action will be. Most of what I have read relates to PNE and more pain and symptoms. I think the steps I should take are
Go to general doctor and try to get on meds. Get referral to PN aware doctor (non surgeon?). Try to find a PN nerve block doctor and get 1-2 guided blocks.

I dont believe it is entrapped, but is irritated greatly, but I will let doctors tell me. Any suggestions or help are greatly appreciated.

Brad

(edited to remove some personal information during claim process)

I would go see my regular GP and start with something like medications and a pelvic floor PT. There have been some cases on this board that have been made worse by the pudendal blocks so I would try the other before nerve blocks.

I only have a minute, but I'm going to briefly tell you what I would do if I were you. Feel free to ask more questions and I'll come back and elaborate.

--stop sitting, which it sounds like you're doing a good job of this
--cease all exercise with the exception of walking on a flat surface or swimming (no froggy kicks!)
--get evaluated by a pelvic floor physical therapist
--find a doctor who is willing to work with you on medications for calming down the nerve, muscles, and pain. Some suggestions include:
>Anticonvulsants for the nerve pain (Lyrica, Neurontin)
>Anti-depressants for the nerve pain (Elavil, Pamelor, Cymbalta)
>Muscle relaxants for the muscle spasm (Zanaflex, Baclofen, Valium)
>Pain medication for flare ups (Tramadol, narcotics)

If after a few months, you do not see improvement from the above, then I would seek out the official PN/PNE diagnosis. I'm of the opinion that nerve blocks and a consult with a PN specialist only do you good if you are pursuing more invasive treatment. Other more invasive therapies you can try besides surgery are Botox to the pelvic floor muscles, trigger point injections, and pulsed radiofrequency nerve ablation.

Lauren

Thanks for the replies.

I'll start with a GP visit and go from there. I assume he will say PT to start (after usually prostate checks, etc). I am going to take printed out copies of the documents that this site recommends.

I was also thinking that PT and meds would be the way to start, but the story of the 17 year old cured by 2 nerve blocks because he was only 3 weeks along. I didn't want the possibility of a total healing to pass me by while trying PT instead of the blocks. I thought the sooner the better.

I thought, probably wrongly, that the PT was mainly for people with spasms and pelvic floor problems. I dont have musc pain and can relax the muscles and dont feel any tensing or spasms.

Thanks for the replies. Most of what I have been reading is circa 2001-2004 so I dont know how identifying and treating it has changed.

If it would help I dont have a problem with going to Houston or SF california if it means better care.

I am not even sure if workers comp covers what i'll need if the doctors dont accept insurance.

Brad

Hi Bradley,
I only have a brief addition to Lauren's excellent advice. Nerve blocks, in my opinipn, are mainly diagnostic and rarely if ever a solution. I would definitely try the steps she has suggested. A competent pelvic floor physical therapist if there is one available locally can be helpfull in evaluating your situation and taking a shot at calming down your pelvic floor if there are muscular issues involved (tense pelvic muscles pressing on your pudendal nerve). If you want to travel, I would highly recommend a trip to NYC to see Dr. Hollis Potter at the Hospital for Special Surgery for an MRI. A round trip to NYC and a room can be done for $600 and most insurance will pay for the MRI. She has special software for her 3T MRI that allows her to evaluate nerve issues. She found scarring at my right pudendal nerve that corresponded with pain elicited by internal pelvic pressure by a PT in the same spot.
If medication and PT don't resovle your problem. she currently seems to be the top choice for evaluating your next move.

Don

I am getting an initial GP visit this week and see if I can get to a PT and start on meds. I am in no real hurry, I just dont want to cause more damage.

I have been very hypervigilant with any exercise or stretching because I dont want to get worse.

I would love to visit NY and Dr Potter, I was reading about her last night. The only issue I see is that I got this from work and it should be on workers comp through SAIF. I haven't had to use it before and they seem to be picky on who you can use and not use. Most Drs have to be on or agree to SAIF's group policies or whatever they are called.

On SAIFS lists of Doctors in Oregon, I don't even see many Neurologists or Urologists anywhere close.

Any help or comments are still very appreciated.

Should I do the messaging with Dr Renner to see if he thinks I should go with PT first or if I am a higher percentage candidate for the blocks working?

Thanks again everyone.

Brad

Hi Brad - I would just like to say that you seem to have a really good attitude to all this. You've done exactly what you should have, right from the beginning, and stopped sitting. Have you read 'What should I do first?' in the information pages of this site? You've got it spot on.

I would think that you can indeed hope for healing, especially if you carry on with your avoidance of sitting. Meds are helpful for relieving pain, but they won't do anything to make things heal any faster. So if you do take pain meds - that's for neuropathic pain, of course - please take great care that you don't let the lack of pain deceive you into thinking you can sit again too soon.

Thanks everyone for the advice and replies/pm's.

I saw my doctor and he said I have either PNE or Sacral nerve entrapment. Then he tested all my leg strength and whatnot and said it must be my Pudendal, so thats good.

He put me on a low dose of gabapentin (sp?) of 100-300 mg 3 times per day. Right now I am just taking 100mg 3 times per day and will see how that goes. He said the next step (after my workers comp claim is accepted) will be to try lyrica possibly and then go to PT if need be. It seems there is a PN aware PT in Keizer Oregon that I could see.

My doctor didnt seem to know a ton about PN and left me in the room so he could research a little more. I had printed out my symptoms and some of the info in the sections her includiong meds, which he really liked. He also told me that mine is closest to the cyclist injury that is seen, then said that if these methods dont work (meds, pt) then there are nerve blocks and decompresson aurgery which we could look at later. He also said with the "cyclist" type of injury to the pudendal that surgery is very effective for full recovery. I'll get more info on where he learned that.

Brad

Hi Brad,

That's great that your doc is willing to do some research to help figure this out. Your physical therapist should be able to evaluate the pelvic floor muscles to see if there is some tension there that you are not aware of. Since you have caught this early and are being vigilant, hopefully you can avoid nerve blocks and other more invasive procedures as they are not without risk.

Not sure how far you are from Keizer Oregon. I'm sure the list of PT's on the HOPE website doesn't include everyone on it so if that's too far away for you, it's possible with a little research you might be able to find someone closer but the key is to find a therapist who is experienced with pudendal neuralgia and won't have you doing exercises like kegals that can make you worse. Good luck!

Violet

Thanks for the reply. I am taking the neurontin at just 100 mg 3 times a day and it seems to be taking the worst burning away. I just seem to be constipated now, i guess as I never have been before, and have a side ache now and then and other new aches.

I am still trying to learn about PN, just got the paperwork and he indeed diagnosed me with Pudendal Neuropathy, and don't want to just mask the pain. Because my level of pain is minimal at a 3 or so level, I would almost rather have the pain and hope for it to heal than cover it up and possibly injure it further without realizing it. If I couldnt feel the pain, I wouldnt realize that what I was doing is re-agrivating it. I believe it is not entrapped and still hope it will return to normal.

I still don't know if pain/ache means it is further injuring it or if it is just pain. Sex hurts, but I dont know if that is actually injuring it further.

I need to do some more reading it seems.

Brad