Health Organization for Pudendal Education

Hi everyone,

I have been reading the forum with interest: thank you everyone for your contributions as they provide so much encouragement.

My experience with PN has lasted so far for 9 years. Essentially, it appeared like I had a severe urinary tract infection that would never go away. I had such terrible pain in my urethra, made so much worse when I went to the toilet that I couldn't even get off the toilet, and when I did I would just collapse to the floor in pain. It has at times threatened my job and has most certainly impacted on relationships. However a bacteria could very rarely be pinpointed. After years of seeing different consultants and getting nowhere, I eventually saw Dr Baranowski privately. The nerve blocks he recommended helped tremendously, but were only temporary. It seemed that I had pudendal neuralgia. After a couple of years of trying nerve blocks and medication, it was decided that fitting a neurostimulator would be the best option. So I moved to the NHS since this is not available privately. After 2 years of waiting, I have now had a psychological assessment approved and am awaiting a neurostimulator.

I was wondering if anyone else has had one, and what the surgery/recovery is like? Is anyone's pain like mine, in the urinary tract?

Thanks, rayoflight

Amanda is our "poster girl" for neurostimulation. You can read her story in this thread:

http://www.pudendalhope.info/forum/view ... ?f=33&t=73

Best,

Violet

Hi Ray,


I don,t know anyone who has been fitted with a stimulator but I know that Dr B. has done them for people with pn.

You could ask him if he would be able to put you in touch with somebody who has been through this via London, the specialist nurse would probably be the best person to connact.


Alternatively you try and find a site that is for spinal stimulator patients I know there is one, just put in a few key words. These will mostly be for back pain people but you may strike lucky.

Do let us know how you get on when you have had this done,I,m sure all the UK patients will be interested to hear.

With the very best of luck,


Molly

Dear Rayoflight

When my PNE took off it felt like my bladder and/or urinary tract was on fire. I had no idea why, but that's why I was put through so many urological tests and antibiotics.

Now the pain is everywhere pelvic, even the toilet seat no longer provides brief relief. But I would say that some pain also still heads for the original places. I don't know anything about neurotransmitters, but good luck anyway.

Regards
P_M

Within a month of pn symptoms, my uretha narrowed and had to be distended. The burning pain was excruciating. I truly wish you the best.
Rea