Health Organization for Pudendal Education

I have been under the care of Dr. Hibner since June 2012. I travel to Phoenix to see him. I live in Texas. I have had 3 ct guided nerve blocks with slight temporary improvement. 4 months ago he gave me Botox shots which helped a lot but are wearing off. I have an appointment for Feb. 14th for more Botox. I have spent the better part of the last 4 years reclining in bed. That is lying back on propped up pillows. Pillow under my knees, and usually ice between my legs. I am able to read and use my IPAD this way. I have asked various professionals if this is ok and they say it is. However, I'm having problems seeing how this could be okay without making my situation worse. Aren't I putting pressure on the same area as when I'm sitting? I have bilateral PN so I'm not sure how I should be lying. Please help!

Lindsay, being in any position too long can cause problems even if you don't have PNE but if this particular position is not causing you pain it seems like it should be OK. Sounds like it could be putting more pressure on your sacral area than your sit bones. Do you have pain if you are sitting upright?

Violet

Violet,
When I have to sit, I use my cushion your assets cushion. (But not in bed). It keeps my entire area from resting on a hard surface. But after a while, my sit bones do hurt because its the firmest cushion. It still beats the pain and burning from sitting directly on the chair, etc.
Yes, I'm sure the way I recline puts the pressure on the sacrum. I just don't know if its equally as bad for my PN as sitting straight up. I guess that's my main question. Am I doing more harm while thinking I'm doing the right thing?
Should I be lying flat?
Thanks for your always quick response!
Lindsay

I don't know Lindsay. I've often heard, "let pain be your guide" and that if it doesn't hurt it should be OK. I could not have been in the position you described because it gave me too much sacral pain but it sounds like sacral pain is not an issue for you and that you are not putting pressure directly on the pudendal nerve. Do you have a PNE PT that could assess you and give an opinion?

I think your mental health is important too and it's really difficult to read or work on your computer lying flat, right?

Violet

Thats part of the problem. While i was diagnosed with PN, i dont know if some pain is sacral or not. And you're right. Doing anything flat is nearly impossible!
I have taken physical therapy for 14 months, with different therapists, both in Denver and El Paso, and nothing helped. My PT, here in El Paso, is trained in PFD and did know what she was doing. After my Botox, in October, Dr. Hibner's PT told me to wait 2 weeks. I then went back to my PT for a couple of weeks and it just made me hurt more. I was then leaving on a 6 week trip, not my idea, so they told me just to wait til I got back and after my next round of Botox. Dr. Hibner's office is the most terribly run of any Dr. I know. He's actually employed at St. Joseph's. If calls are returned at all, it takes about 5-7 days. So I rely on you and others on this website for info.
My local gyn was killed in a tragic bike accident in June, so I don't even have anyone local for advice. Not that anyone in El Paso knows anything about PN.
Thanks again.
Lindsay

Hi Lindsay.

I also spend much of my time propped up on pillows. I have low back pain as well as pelvic pain, and sitting straight up in a chair all day is not an option. I work from home using a laptop computer with a pile of pillows behind me and one under my knees. I have been doing this for several years and do not think it has done me any harm. Of course, everyone is different and staying in one position for too long isn't good for anyone. I think it makes sense to do whatever feels best. For me, the reclining position works better than anything else.

Greeneyes

Greeneyes,
Thank you for sharing that info with me. I'm scheduled for more Botox on Feb. 14th and I'll have to ask Dr. Hibner again if I do indeed have sacral issues as well, or if reclining, as you do, is a good position for me to be in.

I wonder if the pillows under the legs is a good idea? Seems like it puts more downward pressure on butt. I lay flat with head proped up but I have to admit that as the months go by my butt is hurting more. I lay on my sides about 10 hrs a day when sleeping and the rest on my back in my latex bed in living room. I do not want to spend 24 hrs a day on side. Can't sleep on stomach because of ostomy bag.

The pillow under the knees takes pressure off the low back, which is a major source of pain for me.

Greeneyes