Health Organization for Pudendal Education

I sent my first post on the Pudendal.info site a couple of weeks ago but I don't know where that has gone so I thought I will start again.

I have been in pain for nearly 2 and 1/2 years now thanks to the HOPE site I am getting closer to a diagnoses.

In the last 2.5 years I have been to 4 specialists (back, hip, vascular and urologist) had lost of scans and x-rays and one operation (varicocele embolization) that made no difference. At the start I suffered minor pain in my left buttocks, left testicle and scrotum and found it difficult to sit all day. Two years later I can hardly sit at all, a 1/2 hour car trip twice a day and 30 minutes for lunch. The rest of the day I now stand, working with my laptop on my filing cabinet. The pain now spreads into the top of my left leg, so much so that I can only sleep on my right side as minor pressure on the left buttocks and left hip causes pain.

On finding this site I contacted my GP and advised that I thought I might have a problem with my pudendal nerve and would like to get a referral to Les Roberts as he was listed on this site as a Melbourne (Australia) based neurologist aware of pudendal nerve issues.

Well I had my first appointment last Thursday and the preliminary diagnoses is that I have pudendal neuralgia. Although this is not good news I was so relieved after 2.5 years not to have a doctor shrug there shoulders and send my home. Big thank you for the HOPE website for heading me in the right direction.

My my next step will to have the pudendal nerve motor latency test, waiting to be advised when that will be.

One question for other PN sufferers, do they find that the pain goes into their leg? My specialist advised that all my symptoms were in line with PN except the leg pain.

regarding the leg pain:
Many of the same structures in the pelvis that can entrap the pudendal nerve, can also entrap the sciatic nerve which runs down the leg.
At the moment, I have sciatica (pain running down the leg), from PNE TREATMENT: my pudendal nerves were suspected of being stuck in my piriformis muscles, so these muscles were injected with steroid. The piriformis can also easily entrap the sciatic nerve, and so what I wound up with was piriformis swelling which increased my pudendal symptoms and gave me sciatica. So much for treatment.
Point being, both nerves run from the base of the spine through the pelvis, and both can be entrapped by pelvic pathology. So it is not unusual to have both.

Hi Marc,
Welcome to HOPE! I'm so sorry about your condition but am thrilled you've found us and are FINALLY getting some answers! Even though our road to recovery is a long one, it's nice to be in contact with people who truly understand what you're going through and take this journey with you.
I hope you keep us posted with your treatment progress.
Best regards,
Karyn

Welcome to HOPE Marc

Thanks for continuing your story here, we really appreciate sharing experiences so that we can try to offer some support and HOPE for this future.

Thanks for the leg pain information and the warm welcome. I certainly will post my progress on this site, after 2.5 years of not talking to anyone who understood my problem it is very therapeutic to write about it, get support and read about others peoples stories.

Welcome Marc. Which part of your leg is it?

You can check out this trigger point chart:

http://www.triggerpoints.net/hip-thigh-knee.htm
http://www.triggerpoints.net/triggerpoi ... formis.htm

Another muscle that could be a problem is the obturator internus. Check out this chart:

http://tinyurl.com/35vqbg5

Hi Violet,

I get pain it 3 areas, upper posterior thigh, upper medial thigh and TrP1.

Hi Marc;
Welcome to this site. I know you will find some help here, as I have. Remember, no question is dumb. Ask away and someone will have a suggestion.
Glad you're on board;
Doreen

Hi Marc,
I had to respond after reading your first post. I am female, but the symptoms you described are pretty close to how I feel. My pain is all on the left side and it definitely travels down my leg. Sometimes it is the back of my leg, occasionally the top of my inner leg, and now it is starting to be from the top of my buttock/hip and down the outside of my leg. I don't get why it changes, but it has always affected my left leg from the beginning. Of course it also affects my left pelvic area too. My work has been kind enough to get me a stand up work station. Like you, I stand all day except for lunch and the car ride.
Wish you the best of luck. Hope you get some answers soon so you can hopefully get some treatment to lessen the pain.
Gracie

Marc wrote:Hi Violet,

I get pain it 3 areas, upper posterior thigh, upper medial thigh and TrP1.

Marc does this image http://www.kenthealth.com/articles/back ... oints.html of TrP1 show the right place?

You probably have more than one muscle complaining. Piriformis and obturator internus are likely culprits -- a good PT should be able to help you sort this out. Have you checked out the list of PT's yet? There aren't a lot in Australia yet but maybe one on the list will know someone in your area.