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sitting pain--pudendal nerve entrapment sitting pain--pudendal nerve entrapment

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Unread 05-17-2004, 11:58 AM
sitting pain--pudendal nerve entrapment

Celeste, Thanks so much for you post, it is really amazing that I am now more then ever thinking that I do have pne. I go back to graduate hospital pelvic specialist on thursday . My Doctor and my physical therapist both returned my call when I told them to go on the web site. What kind of test dx's pne and is it painful? What is nerve decompressen? I am on neurontin and they did up my dose. It makes me real tired at night, now I am taking one in the morning as well. So I wonder if I can function at work and at home. I sit all day at a computer, I am a Business Manager at a High School and I have taken time off for surgeries and post op visits,test so forth. My work is understanding, but I make up the time one way or another. I really thought after my hyst that I would feel better and It has been a year from hell. I will keep in touch with you all and let you know what happens on Thursday;s visit. I hope I can help someone and get some info from my Doctor. I am also taking a bladder med that makes my urine blue, I really do not know if it is related to what the pne, but I know that you mentioned in your post that it could be. Well back to work. looking forward to hearing from you and the others. Mary
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Unread 05-17-2004, 12:25 PM
sitting pain--pudendal nerve entrapment

I will post on the tipna site tonight when I get home. My head is spinning with all of the bits and pieces of information that I'm trying to put together to make some sense of what is wrong with me. Like Mary, I too am taking Urimax (turns your urine blue) but it doesn't seem to do anything. My last visit two weeks ago was with a uro/gyno at what is considered to be one of the best teaching hospitals in the East (in North Carolina). This doctor told me that I needed "to stop thinking about it and move on with my life". Not much help there.
Unread 05-17-2004, 01:46 PM
sitting pain--pudendal nerve entrapment

Mary and Jean, I'm glad this information sounds like it can help you. I wasn't sure if it would be all right for me to mention another site on this one, and I am so glad that it was okay and that people are glad to hear about it. I wasted so much precious time in the dark, in pain, and the website really saved me. What I was getting told was, you just had a baby, it's only hormonal dryness! Nobody had any answer as to why it was only on one side, and why it stopped if I stood up. ::grrrr:::

Anyhow, they diagnose it by your history (having a single event that made it begin means a lot), your PNLMT (nerve test) score, and your response to a block of the nerve up at the level of where it branches off from the spine (that way they know it's the pudendal nerve, not the sciatic or others in the area). The PNLMT is normal if it is less than 4, BUT if you have the history, pain description, and get any amount of relief from the first block, your diagnosis is still confirmed. You come back 4-6 weeks later for another round of blocks, this time down lower, and if you got total relief you are done (this is rare since we hardly ever get diagnosed early on ::grrrr: and if you didn't, you set a date for surgery. Oh, and on the second visit you meet the neurosurgeon so he can answer your questions about surgery.

The surgery is not difficult. They just cut through buttock muscle to get at the nerve as it goes along the pelvic bone. They manually free it, they cut one of the ligaments in half and the other they put two vertical slices in. Then they lay the nerve in a lazy S pattern so it is not riding the bone, and close up. The ligament that they cut (drawing a blank on the name this second, I think it's the sacrotuberos) is only needed for pelvic stability during youth. The other one (sacrospinous, I think) is kept whole because it keeps the sacrum stable and you need that. The ligament windows will heal closed in 3 months but you need to avoid lifting during that time to help it along. The 3 months is long enough to let the nerve calm down and relieve its swelling.

Nerve tissue takes a long time to heal, 10-12 months give or take. The site has an excellent article on why this is, called Neural Plasticity. Nerve fibers are a lot different than muscle, bone, and skin in how they repair themselves. Patients post monthly status reports and you can read those and get an idea about what to expect. I don't want anybody to get the idea that it's easy, and I will say that I wouldn't go through this if anything else had helped me in the last two years. But people do recover and get on with their lives, and that's what I need too.

Hope this helps. The Tipna site is very friendly; we even have spouses of patients posting, because this is a huge strain on them too (no kidding, it would have to be). I'm only 42, and there is no way my husband expected to be married to a chronic pain patient; in fact we both expected me to be able to recover from the birth in 6 weeks like anybody else. In addition to having a new baby, it's been an incredible stress on us.
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Unread 05-17-2004, 03:49 PM
sitting pain--pudendal nerve entrapment

Thanks again Celeste! I have a board meeting tonight at work and i was just checking my e-mail. I printed out alot of info from the site and I am ready to talk to my Doctor and PT this week. Thanks again for answering my questions and my husband is great and he is living with a wife that is is constant pain and discomfort. I just now was in my car and I took two advils to get me going for tonight's meeting. Have a good night. Mary

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