Newish..Have Questions

[sman787]

Hi Everyone,

Thank you again for all you dedication and efforts to spread the word and offer support for folks with this dreadful condition.

I have been reading the boards now for weeks and have some questions. I live in Portland Oregon, and there is no one save some PTs aware of this condition or treating it as far as I can see.

1. I believe that I have PN "entrapment" not just neuralgia. I am currently unable to sit and bending my trunk in the slightest seems to traction the nerve where it connects or refers in my urethra/vaginal wall. It is excruciating....and once stirred up for the day, I am in trouble. "Stirring" it up means doing "anything" that requires any time of bending or sitting. My entrapped area is on the left side...in the butt..I can feel it.

2. I have read that people have had little success or worse with surgery...except maybe Violet (who by the way thank you for your leadership and help to newcomers) Is there any one here who has regained the ability to sit or *bend* after surgery?

3. I've also read that blocks not only don't work, but that the steriods can make it worse. I would like to avoid all that if possible..but the as a patient you are led to the that trough and forced to drink.. What advice can you give on that.

4. Finally, ..I am not on pain meds as I have led a drug free life for decades. Yet, if I am to travel to an expert, I will need something as I can not sit or bend w/o making the pain go to a 10 quickly.

5. Do narcotics dull the agony enough to allow doing the prohibited activities so one can travel to PNE experts or bend for daily duties....??????? Would slathering that tractioned area in my urethra wall with lodocaine enable me to function better or would it just irritate it further.

6. And finally.....can PT alone get the pain out of my urethra?????

Thank you!!!!!!!!!!!!!

Any help with answering these questions most appreciated.

Sam

[janetm2]

Sam,
Yes I can sit post surgery but rarely for just a few minutes without cushion, with cushion can be hours but with breaks to get up every hour or so. I have both a simple cushion I carry with me and then a custom Roho that I use in wheelchairs (I have foot problems so use that for malls, museums, etc) and since I have the special cushion in the wheelchair I use it for meals at home and another one that I use at work (I am up to being at work 7.5 hours max but could probably make the 8 but that could force re-entrapment and I don't want to take that risk, a gynecologist fills our paperwork for Family Medical Leave Act so I can leave early using Leave without pay). I only have 2 years until retirement so that is my plan. I can bend but not for extensive periods of time. I went with surgery because my quality of life was going downhill fairly quickly and was only working 4 hours a day with 5 hr days and wednesdays off. Although all is not perfect I am doing better than just prior to surgery and feel I avoided 24/7 pain level 10. Honestly if you have entrapment (PN doctor needs to diagnose it) surgery is pretty much the only answer but you can mask some of the pain with stimulators or drugs if that is a better option for you. A few have had good results with another therapy from Canada that is shockwave but not sure if they were actually entrapped.
Editing to answer more of your questions. I take narcotics (oxycodone 5-325mg) sometimes and it helps some (my chronic foot pain takes well to this) but the nerve seems to be helped with tramadol these are both used as needed for breakthrough pain and I only used tramadol since surgery. The other drugs that are helpful to take continously are gabapentin and lyrica and some others listed in the FAQs off the home page. I have used lidocaine since surgery but my pain is anal so not sure if it would be good for yours. PT can be helpful and is usually the first thing to try as muscle issues can be tackled however they could not help with my entrapment. Always good to fix and eliminate what issues you can. Good luck
Janet

[Violet M]

2. I have read that people have had little success or worse with surgery...except maybe Violet (who by the way thank you for your leadership and help to newcomers) Is there any one here who has regained the ability to sit or *bend* after surgery?

3. I've also read that blocks not only don't work, but that the steriods can make it worse. I would like to avoid all that if possible..but the as a patient you are led to the that trough and forced to drink.. What advice can you give on that.

4. Finally, ..I am not on pain meds as I have led a drug free life for decades. Yet, if I am to travel to an expert, I will need something as I can not sit or bend w/o making the pain go to a 10 quickly.

5. Do narcotics dull the agony enough to allow doing the prohibited activities so one can travel to PNE experts or bend for daily duties....??????? Would slathering that tractioned area in my urethra wall with lodocaine enable me to function better or would it just irritate it further.

6. And finally.....can PT alone get the pain out of my urethra?????

Hi Sam,

A lot of the people who got well and moved on with their lives don't post on the forum anymore. There are many more people than me who have gotten better. I can bend no problem and I can sit but I still use a cushion.

Nerve blocks can be done for diagnostic purposes or for the purpose of decreasing inflammation in the area of the nerve. I am not a big fan of people getting more than the series of 3 blocks that is typically required before surgery because I know several people who have gotten worse from them. But if you decide to consider surgery you are likely going to have to have several blocks prior because they are considered less invasive than surgery and they do work for some people. Also complications are pretty rare.

Narcotics took the edge off the pain and did help with traveling, especially after surgery. I was so drugged up after surgery I think I slept a lot and I don't remember the trip very well to be honest. Most of the times I was able to get 3 seats across so I could lie down. That's my best recommendation. Does lidocaine help you now? It didn't help me much before surgery but during the healing process it helped quite a bit.

I can't predict if PT will take your pain away. It works for some people but not others so it is definitely worth a try.

Best,

Violet