new here, think i have PN

[scope]

Hi,

I thought it might be better if i just explain my situation here, then see what everyone thinks as i really have no expertise in this!

I have a disability, which means i have to use an electric wheelchair full time.
About 18months ago, perhaps a bit longer, i had an issue with the cushion i was using (it turned out when it was looked at it was damaged).
Due to the damage in the cushion, i had extreme difficulty sitting due to a lot of pain on the bone that you sit on (ischial bone i think) but putting my legs up in a crossed position alleviated this. I've had a new cushion for the last 12 or so months, but when i sit with my feet down and not crossed, i've noticed my penis goes numb after about 10-20minutes, and then if i leave them down longer, i get a pain, that's hard to describe as to where it is, but almost inside my scrotum, but its not my testicles. However, if i cross my legs, it relieves it somewhat

I was wondering if this was consistent with PN and if it is, what i should do next.

Thanks,

[scope]

Just to add some more info:
I had a spinal operation in 2005 to straighten scoliosis, so i have rods in my spine.
I've also found if i tilt my wheelchair back it alleviates the numbness sometimes.
as well as the penis becoming numb, my scrotum does as well.
I just thought some of this might be relevant

Thanks

[Violet M]

Welcome to the forum. Do your docs have any idea what might be the cause of the pain/numbness? Most docs will prescribe an MRI to make sure there isn't something else going on like a nerve root impingement in the spine. If the pain is right on the sit bone you might ask them to check for ischial tuberosity bursitis. Another thing you might want to do is get an evaluation by a pelvic floor PT (one who knows how to treat people with pudendal neuralgia) to find out the state of your pelvic floor muscles and to press along the course of the pudendal nerve to see if that causes the pain you are describing. There's a list of PN physical therapists on the website at pudendalhope.org.

Violet

[helenlegs 11]

Hi scope,
Welcome . Great advise from Violet as usual .
Sitting a lot will almost always exacerbate any pudendal nerve problem so as you use a wheelchair this may be adding to the pain. Many people use particular cushions to help alleviate the problem although I haven't ever found anything to suit me, so I'm not the best to advise, sorry. I think it is all a try and see experiment individually unfortunately, which can be costly
It does make sense that tilting your wheelchair will help as you will be taking pressure off any affected area, say ischial tuberosities (sit bones)for instance.
Is your pain on both sides btw? If so, is one side worse at all?
I wonder if the crossing leg motion could be at all related to the ss and st ligaments at all OR maybe the piriformis muscle. You can get your piriformis muscle assessed too with physiotherapy (although not the ligaments). If you are able some easy piriformis stretches may benefit you. You do them lying on your back and you can always get someone to help but only do very easy ones and gently to see if this makes any difference.
I know crossing my legs, but keeping the crossed leg raised but still supported by other leg, is something I do. It does relieve the pain somewhat as I am resting more on my better side.
I would definitely try the PN aware physiotherapy route as Violet suggested. A good physiotherapist can determine such a lot with a knowledgeable examination although it may take a few sessions to see any appreciable improvement if this therapy helps at all. Sometimes it is all someone needs
Good luck

Helen

[scope]

Well, i saw my neurologist, and she said i should speak to my seating specialist as they'll likely know more than her, thats why im now trying a different cushion. It sounds like from what you've said that I should see a doctor.
In regards to the bursitis, that's what i thought the issue was, so maybe i should bring that up with him too. The issue i had was the left side , the right seems fine i think. Is there a way for them to test for bursitis?

If I contact my doctor is there anything else i should say?

thank you so much

[Violet M]

Here is an article about bursitis, Scope.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2698173/
http://tinyurl.com/lupg6ux
I don't know that much about it -- just have heard people on the forum mention it before and it seems like it might be something to rule out before deciding for sure on a diagnosis of PN.

Violet

[scope]

hi,

Well, i think i have bursitis, however i didn't think that could lead to numbness of the penis, however i'll ask a doctor.
Im gonna talk to one on monday and once i have, i'll update this thread!

Thanks again

[Violet M]

Scope, the numb penis problem could possibly be due to an irritated pudendal nerve but that would lead you to the question what is causing the pudendal irritation. Ischial tuberosity bursitis can irritate the sciatic nerve and cause sciatica http://www.freemd.com/ischial-bursitis/ so I was just thinking it might be something to rule out as you are going through the differential diagnosis process to make sure it's not irritating the pudendal nerve since it is easier to treat than PNE.

Best,

Violet

[scope]

Hi all,

Just an update, i've been to the dr and my neurologist. They think it's to do with how im sitting, a new cushion didnt help, but i've been referred to wheelchair services to see if we can alter my current cushion.
my neurologist has also referred me for an mri scan to see if it's anything in my lower spine. I just wanted to update this thread as i haven't been on in a while. I'll update again when i hear anything more.

I really appreciate everyone's replies here, if anyone has any more advice, feel free to let me know!

thanks again

[Violet M]

Hi Scope,

Sorry the new cushion didn't help. Have you tried a roho cushion? Before you go for the MRI you might want to read some of the threads in the MRI section of the forum on experiences other people have had with MRI's.

Best,

Violet