Health Organization for Pudendal Education

Hello I am new to PN and this site but glad to find all the good information here. About 4 months ago I thought I had an initial herpes outbreak but so far all testing has been neg. But most of all the pain has been here ever since. Let me tell you my symptoms which I was unofficially diagnosed as having pudendial neuralgia by the doctor who was treating me in LA at the time a herpes specialist.

Started 3 days after sex, urgency and excess need to urinate, by the end of the week I was intensely tingling all over the groin area for at least a few days I remember, I have never felt anything like that before. Symptoms that followed included burning feeling on testicles, pain in right buttock that radiated down back of thigh and tingling/burning in feet.
During this initial episode which lasted 6 weeks the majority of pain lasting 2 weeks, I could not sit down normally and driving was out of the question.

I am considering this may have been brought on either by trauma, I felt something 'pop' in the penis during the sex or could been caused by an infection herpes or other not detected on testing.

I am now left with mostly moderate pain by the end of the day, right buttock pain , burning in thigh and tip of penis along with tenderness in testicles that gradually get worse during the day and only relieved by a night sleep, symptoms seem worse by sitting or doing anything strenuous which requires the lower body muscles.

I have been on cymbalta as well on and off herpes medication, I think the cymbalta has helped a lot since the initial pain. I would rate my initial pain as a strong 7-8 and now I am at a 3 at my worst but everyday I do feel pain and it affects my daily life. It seems to be getting worse in that resting during sleep I still have days where I wake up and can feel the pain but to a lesser degree.

I want to find a solution to this and like a lot of you I have bern to all kinds of docs with no real answers. I now live in the San Fran bay area and am interested which direction to go? I have not yet been to neurologist or sports medicine docs or pain management all of which are near me at Stanford. The docs I did see have included urologist, internal medicine, dermatologist and infectious disease a lot of testing but no diagnosis.

I am thinking this pain is PN by my symptoms, sitting pain, various neurologic pelvic pains that get better with rest. If anyone has some good docs to recommend in the bay area or California in general I would greatly appreciate it, also along with next steps to take? Go directly to PN specialist or try neurologist and pain management first?

I am aware of some of the PN specialist in Ca the closest being Dr. Weiss but he doesn't take insurance. The ones in southern Ca I have yet to contact. I am wondering if I can at least get on lyrica or some other med by going through
local neuros or pain docs until i can see a PN specialist. My GP thinks this is all in my head and is continuing the cymbalta at low dosage 20 mg just to keep my stress down, I know otherwise this pain is very real and luckily the cymbalta is helping but lesser these days.

Any suggestions are appreciate

Matt

Hallo
your history is somehow similar to mine. My pain started also after prolonged sex, 2-3 days latency indicating delayed pain. This pattern repeated several times, before my pain became chronic (also have some better days with pain on the level 2-3 and some worse when pain is creeping toward 6-7). Psychologically it is very difficult to cope.
Although this onset of pain and problems is not typical, might happen. it is great that Cymbalta is able to reduce your pain.
First of all you have to investigate PT options, because there is very good chance that the uderlying problem is some clenched musculature, especially ischiocavernosus and bulbocavernosus - many guy reported similar problems after prolonged sexual activities.
Surgery is the last resort and should be approached very carefully. However, some cases might require this solutions.
M.

Welcome Matt,
PT is definetly a good start and to find a qualified PN PT see the home page on the left is a link to PTs by state. Also steps are noted in the FAQs section along with other lifestyle changes(minimize or stop sitting and anything else that causes pain). Sorry you may have to join us with this condition but plenty of info and experienced people to help. Good luck
Janet

Hi Matt, welcome to HOPE,
I would agree with flyer, and seek physiotherapy with a PN aware PT. There is a list of people on the home pages. If you can get Lyrica prescribed too that may help otherwise neurontin, which is a similar drug (but less metabolised and less expensive) is an option.
Try and pace activity, unfortunately 'activity' includes sitting but that can help calm things down. That with the medication and some targeted PT may well work well for you. There still will be no harm in contacting a PN specialist, who would probably offer a PN block, however if the PT seems to be making a difference I would stick with that and decline a block in the early stages. If PT is having no good effect, give it a few sessions though, the block will probably be the next step.
There have been a few recent posts where people have really benefited from physiotherapy, although this can take some time. I hope it works well for you.
See I agree with Janet too, she got there before me AGAIN
Take care,
Helen

Thanks everyone for the quick reply and good information. I know of some PT in San Fran that are well aware of PN, unfortunately they are out of network as most PN specialists are even though I have Blue Cross, which means expensive upfront costs.

Seems to be an expensive condition to have, yes I am attempting to get pain management as well Lyrica. Am attempting to get into the pain management clinics either at Stanford or UCSF which only accept referrals. My GP doesn't think anything is wrong with me so will have to see how the referral goes, probably have to change GP.

Has PT worked for you or people with my similar condition, if you know any names on here please pass them along I would love to hear from them.

Matt, I sent you a private message with a suggestion.

Violet