Health Organization for Pudendal Education

Hello I have posted a few topics here already but wanted to expand on my condition and ask a few questions.
My symptoms started after a sexual encounter where I initially thought I contracted herpes - had excess need to urinate, burning in penis and scrotum, pins and needles in perineum, hurt to sit and couldn't drive for 2 weeks. Sciatic pain accompinied this with hypersensitive skin in pelvis. This lasted about 6 weeks then subsided to minimal symptoms, either through the use of cymbalta, antiviral meds orjust running itscycle. So far all testing has been neg for any infections.

Currently I am experiencing minimal groin discomfort but a lot of sciatic pain that gets worse throughout the day, sometime leaving throbbing pain by time I go to bed. Like I mentioned the pain has changed from prior being mostly groin to now being mostly sciatic.

Does this sound like pn? Or other nerve neuralgia associated or caused by pn? Also are there any PN specialists that take insurance? I live in. The San Fran area and everyone I know of here doesn't take insurance. I am soon seeing a neurologist and infectous disease doc to try to rule some things out. I know there are some good PTs for PN here as well as a few specialists but all out of network. I was wondering what are the steps to take before reaching out to PN. Neurologists, pain management, physical therapy? Any direction, insight or referrals would be most appreciated. Thank you

Hi Matt,
Is the sciatic pain in your lower back, buttock or leg ? To be honest it doesn't sound like PN although your other symptoms that have disappeared could have been associated with the pudendal area.
Have you had an MRI scan? You would probably need that to rule out any spinal problems like a disc herniation, as that is the usual cause of sciatica.
It may also be worth checking out your piriformis muscle with a physio therapist, as a tight or spasmed P muscle can cause sciatica (and PN) You could also google piriformis stretches but only do the easiest ones (don't do the sitting ones, always lie down) and stop if it hurts. Is your pain bi lateral?
Sorry I can't help out with your other questions but I'm sure others will
Take care,
Helen

Hi Helen

Thanks for your reply, yes I just started looking over posts here about the P muscle causing sciatica and possible pn and what others went through. Seems if it is the P muscle that is easier to work out than others. I was diagnosed with pn initially by a dermetologist who Is a pioneer in herpes and associated herpes infections with pn. Initially that fit my symptoms as I mentioned the sitting pain was horrible, slowly things moved to more sciatic pain originating in the butt and traveling down the back of my right thigh. Sometimes I have burning in the front of the thigh and even the front of the left thigh and on two occasion had pain in either knee feeling like it was buckled but I did nothing to injure it.

I haven't had an MRI yet, but have a appointment with neuro next week. Also wanted to add I have bladder symptoms meaning urinating often and arousal for no apparent reason with early ejaculation ( sorry for the graphics ). This is not as bad as when it first started but still apparent. I also had some sharp stabbing pain in rectum randomly but haven't had more than 3 instances. And lastly have mild groin pain, lower abdomen and testicles pain at times with slight urethral burn. Sciatica still being the prominent symptom.

I had a question or rather concern, what is the typical recovery rate on these type of conditions. I know it varies depending on the case and severity,but do people fully recover or at least maintain a normal life. It seems a lot of people on here had a lot of treatments over years at a time and some unfortunately are still looking for answers. This concerns me that I may get worse or never recover from this. I hope everyone the best and never even knew of this condition existed until recently.

Indeed! Piriwhatimis??? Yes was blissfully ignorant myself 5 years ago, well probably fair bit less as it took that long to correctly diagnose even tho' I kept pointing at my bum!
I have made the same mistake as you have just done, mentioning the main pain symptoms and almost leaving it at that. I think it is because the pelvic area is so complicated that the whole story is so important. Your less severe or less prevalent pelvic area pains and symptoms may help add to the complete picture so do mention these to the neurologist as well as the sciatica. It could come down to him/her diagnosis a spinal issue, as they are prone to do, as sciatica=spine (Er NO!!)
Unfortunately Neurosurgeons usually don't have any dealings with the peripheral nervous system so they are often unaware that there can be any pelvic connection with sciatica.
The problem then is that they may send you off for an MRI, look at your spine and see no problems so decide that you are faking it OR give a degenerative disc disease diagnosis which means nothing much.
This happened to me actually but because I had a disc problem in the past (S1/L5 microdiscecomy which was successful) that did cloud their judgement.
If they are sending you for an mri anyway make sure they do the spine and pelvis if possible. The nerves can not be seen unless it is a higher resolution scanner (and even then not all) or MRN (as Dr Filler terms his patented but similar imaging) The nerves are difficult to see anyway and I'm not sure where you are located but take a look at Hollis Potter in New York (there are a few mentions on here about her)
Even if you have a normal pelvic mri the size of the piriformis muscles can be seen (more importantly any asymmetry) so it is still worth having the pelvic image.
The bladder symptoms you mention with arousal and rectal stabbing do sound more PN related but burning in the front of the thigh and lower abdominal could be the Ilioinguinal Nerve? I don't have any front of thigh or lower abdominal problems so I am not sure about this one. I don't think it has any association with the piriformis muscle though so not sure how that fits in at all, Sorry.
Does the rectal stabbing occur in the same place?
A persons history seem to be a large factor in time scale and ability to treat the problem. If there is NO history of trauma incident and quick onset of symptoms say pelvic surgery, fall, weightlifting (more causes on home page) then recovery is usually easier and often can be managed by some medication and physiotherapy.
Is your p muscle painful if prodded? It is fairly deep so needs a good push, maybe best left for a physio to evaluate If you try an easy piriformis stretch and it hurts it will give you an idea if that muscle is involved. http://www.spinal-health-care.com/tips- ... stretch-2/
take care
Helen

Hi Matt,

I was reading back through your previous posts and now I'm just wondering if in fact you even had herpes. Did you go through the diagnostic process described on web md? http://www.webmd.com/genital-herpes/gui ... -diagnosis The reason I think this is important is because treatment for pudendal neuralgia caused by herpes might be completely different from pudendal neuralgia caused by something else. Urinary frequency and persistent arousal in the absence of desire are very possibly due to pudendal neuralgia (they were two of my worst symptoms).

Your original symptoms sound like they could be PN related although there are other illnesses with simialr symptoms so I think that's good that you are having an MRI. You may want to find out if your radiologist can use Dr. Potter's protocol for your MRI -- you may want to request that your MRI include the pelvis, the lumbosacral plexus, and lumbar spine area to make sure there is no obvious pathology at the sacral nerve roots and at the plexus of nerves underneath your piriformis muscles.

I think I PM'd you a suggestion on finding a physiotherapist in the Bay area who takes insurance. Did you have any success with that? I don't know what your other history is but I think everyone with pudendal neuralgia symptoms should have a PT evaluation to see if there are any musculskeletal issues contributing toward their symptoms. Frequently, pudendal neuralgia does not occur all by itself without some other issues going on which is why I think a PT evaluation is so important.

The word "cure" is somewhat elusive in the world of PN although there are many people who get significant improvement and are able to return to a normal, functional life with very little discomfort as long as they live a careful lifestyle. I had severe piriformis syndrome pain on the right side before PNE surgery which has completely resolved. I was feeling so good I started using the treadmil and now I'm having some piriformis issues on the other side. I have pelvic stability/misalignment/SI joint issues which you may not have but it's something you want to have checked at least -- and it may not show up on an MRI.

Violet

Yes I had multiple testing done for herpes and other infections - still a few out there yet. All came back neg. the problem is the testing for herpes is not reliable,I have spoke with people on other sites that were positive for years while still testing ngeative. Unfortunatley both of these illnesses pn and herpes have similiar symptoms and no clear cut testing methods. I never got the tell tell blisters which is a big problem in the diagnosis.

I will definitely take your and Helens advice for the MRI requirements. I got some names of PT'S in the area which I need to contact and find their insurance status. What other illnesses you mentioned have similar symptoms? My history prior to this I havent had any issues with pelvic pain before whatsoever. I use to do moderate exercise, weightlift, light running when i had time, nothing strenuous. Everything fell apart 3 days after that sexual experience, that is the main contributor I am thinking to this condition so far. So it could be infection related or trauma during the event. It seems weird though that after the excruciating symptoms I had, they mostly went away to neusense pains or changed location from groin to sciatic. I guess time will tell hopefully what the cause was, either way i think treating with medication and therapy will help both causative factors, the real choice would be if it was needed for surgery or not but that would only be a last resort and way too soon now.

Yes Matt you have a way to go with conservative treatments first off, also take a look at the medications available for neuropathic pain (home pages)
As Violet said a good PT evaluation could give you tons of information and hopefully helpful treatment. Let us know how you get on.
Helen

Ok went to the neurologist, he did a physical exam found numbness in upper thighs and hypersensitive in right rear thigh, sciatic area. He didn't think I had PN because my symptoms were so diffuse and mainly associated outside the groin area. Did not warrant an MRI even though I mentioned it. He did see similar cases in military men stationed overseas that caught something after sex, and he took them through the gammet of tests to find out nothing, their symptoms eventually went away - was diagnosed as unknown virus.
He did put me on neurotonin up to 2700 mg but I can stop at any level that seems to help the symptoms. Currently it's almost been two weeks since starting meds and 1200 mg am feeling a difference, sciatica pain in about gone but still have burning in upper thighs, soreness in inner thighs and random pelvic/groin pain, nothing to cause major issues but I still know it's there... Also sitting increases symptoms.
Will see how it goes, I can come back anytime but have a followup in oct. I was wondering does my initial symptoms which came on quickly and so severe then died out to minimal symptoms after 6 weeks and then lingered and slowly going away up to current seem like PN or other nerve impingement to you? For me it seems to suggest an infection of some sort but maybe not.

Very glad that you have found the medication effective Matt The whole pelvic pain problem can be so difficult to sort out it may take some time to get some good answers especially if you have diffuse symptoms.
At least something is helping now although you may never really know why it all started.
Take care,
Helen

I just had my first flare up. Yesterday I went to a seminar where I had to sit on those chairs you find it hotel conference centers, metal frame with padded seat and back, the stackable kind. Anyway after sitting and squirming for about 5 hrs I had about a 6-7 pain scale sorenessand burning in buttocks both sides but predominantly the right side, no pain in groin though. The right side also had some pain radiating down back of thigh and have burning sensation on top of both thighs. Does this sound like pififormis syndrome? And how to recover from this pain? I have been lying down resting the next day and have been taking the neurotonin along with some aleve anti inflammatory. I hope it goes away soon, prior to this I was doing well with minimal discomfort, I hope this is not a sign that I cannot sit for long periods and was only due to the poor chair comfort. If so I will have to get a standing workstation as my job, when I get one again, requires a lot of sitting at a desk. Please let me know your thoughts and suggestions.