Health Organization for Pudendal Education

OK Hello, I am new to the board. I am 47. I just signed up today. And I don't have the ability yet to be on a computer without sitting... I have PN. I need to make allot of changes to my lifestyle. My place is very very small which I am finding is really tough with this issue. It started out feeling like I was sitting on a baseball but has progressed to pretty much every symptom on the symptom page. I feel like I failed badly at treating this early. Not for lack of complaining to my doc. He told me there was no treatment. It took a few months to get a new doc as I find that answer unacceptable, but those months I paid a big price for.

And now I am really at my witts end. At nights I pray to Gods I don't believe in, scream into a pillow or spend time sitting on the can which is the only place I can sit. I have been through alot , chronic pain for 15 years, but this is too much. It hurts to sit stand or lie down... Flare ups last days to weeks and I can't continue like this. Every night is level 9 pain with no position to get comfortable. I count my sleep in minutes. The pain now continues into the day. I also have peripheral neuropathy in my legs and feet, so walking I do, but it's also painful. The PN went undiagnosed, rather ignored by my old doc for far too long.

I found a better doc and am getting spinal Stimulator trial done Monday. Yet nobody told me not to sit or even to get a cushion etc. Or find the correct PT. So I am learning this on my own and a tad late since I was just officially diagnosed and now it hurts to stand. I have tried everything. Cymbalta worked but I have a horrible reaction to it, as I do with steroids, lyrica etc. Traditional Narcotic pain meds don't seem to help much. I am getting a trial spinal Cord stimulator on Monday. I was reluctant but I cannot live like this. I am running out of options. How do people live like this? I have been in horrible pain before, lived through Encephalitis, spinal surgery etc. etc., but now, yet another new thing to add to my list of issues. It is so constant with a loss of being remotely comfortable in any position. I really feel like giving up. My hope lies in the Spinal Stimulator.

I need to find a PT that knows what to do and not to do in my area. If anyone has advice on what exercises that are OK with PN and what are not, that would be very helpful. This site and forum has helped me greatly by just reading and I appreciate everyone sharing their experiences.

I wear loose fitting clothes as and still in search of underwear that doesn't hurt to wear and breaths better. I found some ideas to try on this forum which is great. I got a cushion today. It helps some. I need to look at some more. I am grateful to have found somewhere to share info. Got to keep this short. Thanks! Tim

Welcome Tim,
Sorry to hear you have been through so much and now this! There is a list of PN aware PTs off the homepage. The FAQs off there are a great resource for lifestyle changes, meds, etc. Tramadol seems to help me sometimes better than trditional pain meds at least for PN issues. Glad you found us and can get somewhere for relief. Good luck.
Janet

Hi Tim. Welcome to the forum.

I'm just wondering what types of imaging you have had already. Did you have an MRI to rule out any remaining spinal issues such as arachnoiditis, transverse myelitis, tarlov cysts, or sacral nerve root impingement? Just wondering because you mentioned you have neuropathy with pain in your legs and feet.

Hope the neurostimulator works for you. Have your docs mentioned the option of an intrathecal pain pump -- possibly with prialt? Just something to keep in mind as an alternative option if the neurostimulator doesn't work out.

Take care,

Violet,

Thanks to both of you for your replies. I greatly appreciate it.

I have got allot of great info from the main site. There just are not any listed PT's close enough to me. 90 Miles away is the closest. But my new primary doc is great and I will be asking him for help in to find one too. I am on disability with Medicare and my income is very limited. All the copays for this stuff is killing me financially. But thats nothing new.

I did get a nerve conduction test that showed I had peripheral neuropathy from scar tissue from my last spinal fusion. Nerve entrapment.
I went back to the neurologist when the PN pain got so bad, and she said to do a deep nerve conduction test for that area would be a waste of time as they are unreliable... She sent me to a very good pain specialist. At least one I trust for surgical stuff. But I can't use steroids so a nerve block was out of the question.
After seeing a pain specialist and her, they both agreed it had to be PN or Pudendal Nerve entrapment. I do have some issues in my spine. Pretty standard stuff. Stenosis, Scoliosis, scar tissue build up. Some others i do not recall, but nothing definitive to aide in a more solid diagnoses of PN. Although both specialists agree thats what it is. There just are not that many other things to cause neuropathic pain in these areas...

I am interested in a pain pump if this does not work. Thanks for mentioning that as I want to ask my pain doc about it. I am interested in anything that will work... I had 6 nights of utter hell and finally got 6 hours sleep. Now my flare up seems to be a tad better as long as I am hyper avoiding sitting. The pain while standing lasted 2 days but seems to be better as long as I really am diligent about not sitting as much as humanly possible. This is so hard. I was on my feet so long my upper back went out. But hey, on the bright side my house is getting really clean since I cant lay down or sit much.

Thanks again. I am doing better with a few hours sleep under my belt! Hopefully the trial stimulator works. I go in Monday morning. Thanks again. Tim

TIm,
Glad to hear you are able to try a stimulator. Hope it gives you some relief. You may want to check out the cushion section. I put together something cheaply with gardening pads and velcro, Your doctors sound willing to help and that is always a goid start.
Janet

Thanks I will do that! Well the trial stimulator is helping well beyond the 50% I needed for it to be a success. I even slept two nights in a row! Whoo hoo! I do still have pain while sitting and laying down but it tampers it down to a tolerable level. Now I need to wait a month to get the permanent Stimulator and this one comes out today. . I am just going to have to go back on Cymbalta for a month and deal with the side effects. But at least there is relief coming! Thank you for all your help.

Hi Tim,

I'm also experiencing a severe amount of lower back pain that is painful when standing. I also get cold legs and feet as well as numbness and tingling...I'm interested to know if you can share a bit more about this spinal stimulator and its functionality? (You or anyone else that can pipe in). You had mentioned your pain subsided when standing is this in just your back or does it include the perinium pain and discomfot. Also, because you are experiencing cold legs and feet and lower back pain I'm trying to find people that have a similar case as I do (I understanding everyones is different...but I'm sure you know what I mean) Could you share any additional information about your symptoms - if you wouldn't mind? You can even PM me so its private. I'm interested to know if you experience any sharp pain in the penis sorry if thats TMI. But I do have sharp pain that happens frequently throughout the day.

Thanks and best of luck
D

Hi Tim, great news you are getting some relief, life changing I'm sure! Can I ask does the stimulator restrict any activities e.g. swimming? How have you found life coping with it?
I wish you all the best for the permanent one

Hi Tim, great news you are getting some relief, life changing I'm sure! Can I ask does the stimulator restrict any activities e.g. swimming? How have you found life coping with it?
I wish you all the best for the permanent one

Hi Tim, great news you are getting some relief, life changing I'm sure! Can I ask does the stimulator restrict any activities e.g. swimming? How have you found life coping with it?
I wish you all the best for the permanent one