Health Organization for Pudendal Education

I am 39 years old , Male living in India and from past 1.5 years I have all the symptoms of PN, I am living in India

At the start I went to urologist, Who did cystoscopy but could not come out with anything except he could see inflammation

He thought its chronic Prostatitis (To which I am not satisfied, as how come I have feeling or pain of some foreign object in rectum)


As I had also sensation of like some foreign object in my rectum LIKE I have some coal placed in rectum, After each bowel movement pain increases By sitting my pain increases, so I went to gastroenterologist, who found nothing in my rectum

Then I myself started searching on the net and I am on conclusion that its pudendal neuralgia

I went to neurologist in India , who also had not much Idea, When I told him that through my search I feel I have PN, He told he has no information about it but gave me Gabapentin which is giving me some relief along with its side effects

I am unable to find a specialist who can do diagnosis of my condition (Being a father of 2 lovely daughter 9 and 11 years old, I want to spend more and more time with them but this condition is keeping me agitated for which i feel very sorry)

Can any body assist, I am also ready to travel abroad for its diagnosis

Hi Kanwar

I can only recommend Dr Gareth Greenslade in Bristol in the UK who i have been to see in order to get a PN diagnosis - Bristol has an airport - there may be flight connections to get you from/to India.

I am using gabapentin - if the side effects are too much i hope that you have been told that Pregabalin (UK name) is similar with less side effects but more expensive so not always prescribed initally.

Rosemary x

Kanwar, there is a section of the forum that lists some physicians in India. http://www.pudendalhope.info/forum/viewforum.php?f=99 If you could find a good physiotherapist in India who can diagnose and treat people with pudendal neuralgia, that would be a good place to start.

If you don't see anyone there close enough to you, maybe you want to go to someone on the list of PNE docs listed on our website at this link: http://www.pudendalhope.info/node/54

Best Regards.

Violet M

Hi Kenwar, welcome
I do understand your difficulty. YOU can match the pain to the probable pathology but the clinicians around you still need to catch up. . . .that is so not what we would expect from them
Gabapentin is primarily an anti seizure drug. However, it was discovered that it could have a beneficial effect on neuropathic pain. I know that it is not ever prescribed for 'normal' pain, so the fact that it has been of benefit to you would lend itself to a nerve problem; so you would seem to be on the right track.
I do hope that you are able to find effective targeted treatment.
Good luck
Helen

Thanks helenlegs 11, Violet M , Rosemary

Your Few kind words mean a lot to me

I plan to visit Canada with my family in April/May 2013, Then I think I will try to contact Dr. Stanley Antolak who I have located after searching from the web site

Any suggestion , should I go for nerve blocks, have any of you experience about this

Hi Kanwar

I have had one Unguided nerve block at my local pain clinic - used as a diagnostic tool - which gave no result and gave no pain relief.

I am not sure if a Guided nerve block is better than an Unguided one - also i was only offered one nerve block anyway - i am still not sure of it's accuracy.

I will leave it to more experienced members to answer you now as i have not been on this forum for long.

Rosemary x

Nothing conclusive can be gathered from a none effective, unguided block, so it should not be used for diagnostic purposes in my opinion, although you may be very lucky and they might hit the right spot.
Sorry this didn't happen for you Rosemary but it would have been more of a surprise if it had done .
Because of this it is important to have a guided block. Some clinicians use 3 separate blocks spaced over a few weeks with (they report) good results. I'm pretty sure that Dr Antolak will usually use the injections as part of his treatment Kanwar.
Good luck and let us know what you decide upon.
Dr Antolak is very well regarded for his work with PN. The excellent spin off being that he is very good at spreading the PN word with presentations and literature too.
Take care
Helen

I had some unguided blocks that showed a little relief. The guided gave full relief for a few hours and helped to confirm my PNE.
Janet

Kanwar, I had guided nerve blocks from Dr. Antolak almost 9 years ago. They only gave several hours of partial relief. I see them as primarily diagnostic because I don't know many people who have gotten permanent relief from PN blocks. If you can try physiotherapy before any invasive procedures that would be ideal.

Violet

Yes Kenwar, as Sunil is saying it is always a good idea to get a physiotherapists and or chiropractic evaluation, they can also tell if there is any muscle spasm or trigger points in the pelvis which can then usually be treated. Hopefully easing the problem. It is always better to find someone who Is PN aware but you may not have an option with that unfortunately.
Take care,
Helen