Transverse Myelitis and Pudendal nerve problems

[purdy]

I was diagnosed last September with a spinal cord virus, which then developed into TM. Since then I have had problems with aches and pains in the groin/testicular area etc. The Neurologist never gave me a straight answer as to what was causing this pain, however my GP referred me to a Urologist when things didn't clear up. First off, the Urologist gave me some antibiotics to check for infection, but he seemed to think I may have damage to the Pudendal nerve, which has either occurred as a result of the TM, or due to lots of cycling before the virus started. Either way, I am going back on Monday as the antibiotics haven't worked, although since my last visit the burning has stopped. I have had endless urine tests, the last one by my work medical doctor yesterday, and all is normal, and always has been.
I am not particularly happy with how things are progressing, with lack of info from doctors etc, and would like to know whether anyone else has had this problem, and how it was sorted? I would like to put some pressure on the consultant for some answers, and some treatment, and by listening to others with the same problem, have an understanding on what I should be suggesting to the consultant. He cannot be 100% sure, but this seems to be a valid route, and a valid problem that needs addressing.

[janetm2]

Hi purdy,
Although I did not have your symptoms or seen the doctors you have seen I can point you to some info for you to consider until others answer. The faqs off the home page have a wealth if info such as a letter to your doctor, medications that can help if you PN or PNE to lower the pain and PN aware physical therapists (PT) and doctors are listed off the home page. One of the first steps is to see a PT to see if there is something they can loosen up to relieve the pain or find what specific area muscle, ligament or something might be a problem or cause of your pain. The doctors often do nerve blocks to see if the nerve is the problem - note this is not conclusive evidence but with your cycling history and any other PT or physical exam by the PN doctor they get a better idea if it may be PN or PNE. Best of luck in finding a diagnosis and treatment.
Janet

[purdy]

Great thanks. I am in France, and am under a Urologist atm who is aware of this Pudendal nerve problem. Who are the right people for doing nerve blocks, as this was something I was gojng to suggest to him. Is it him or a Radiologist that performs these things?
Thankyou so much for replying. I am hoping a nerve block with help troubleshoot. If that doesn't work..plan B whatever that is.

[janetm2]

Yes it would be a radiologist and you want it to be guided. The PN doctor tried some unguided blocks on my first visit but never hit it correctly on my left/bad side. The guided blocks hit the mark exactly and my pain disappeared completely but of course this diagnostic so the pain returned in a few hours. Good luck
Janet

[purdy]

Can I ask how they do it?

[janetm2]

I had CT guided nerve blocks and those I believe they go through the buttock (I was lying on my stomach). Others have suggested getting them via ultrasound so you can avoid the radiation and they probably are done the same way.
We have a whole section on nerve blocks and there are descriptions of medication used such as steroids. As you would see everyone has different experiences with them. I had no pain flares afterwards luckily.
Janet

[helenlegs 11]

Hi Purdy,

There are a couple of excellent PN recorces in France. You could get all that is needed depending on your symptoms of course from Professor Roberts and his team in Nantes. Here is the list http://www.pudendalhope.info/node/57#FR
I have no information about a connection between your spinal problem and PN but more and more reasons for an onset of PN are emerging. To some extent the reason why the problem occurred may not matter as the treatment like the block Janet described is the same regardless.
Let us know how you get on and how you are.
Take care,
Helen