Health Organization for Pudendal Education

I couln't stand not being able to do the things my wife and I enjoyed. The simple things you all can relate too. Not being able to go to a restaurant, theatre or anything involving sitting like a normal person. My case is severe and I have had bilateral surgery for both Pudendal release and Piriformis syndrome which was the underlying cause in my case. I finally bought a power chair on e-bay then modified it to recline further. I invented a simple padded leg support that drops down when I need to get into smaller spaces. Then I made a headrest for it. This enabled me to go out again and take my wife to dinner or a movie. People look at me funny especially when I get up to go to the bathroom but then they just don't understand. I have since obtained one that was actually made to recline and is automatic (Invacare TDX-SP with tilt recline). I just modified the leg lift to a padded platform and now it doesn't look so home-made. I call this adaptation. If you want to live again and your condition is as severe as mine try it as it beats suicide which I thought of seriously. I am 65 and been living with this fo 8 years. But now I can walk my dog and pull my grandson in his wagon. We can go to the mall, Disneyland and anywhere else that can accomodate a wheelchair. Life is better now not greeat but better.

Hi.
Thank you for posting your idea and invention. I am happy for you that you can get out again. Just wanted to ask where your pain is located, and is there a part of your buttocks that can tolerate sitting?..I guess you have to recline to get a comfy position?
I am a middle aged mom of 3... My issues began with IC/Painful bladder syndrome approx 5 yrs back. After trying various treatments,lot of PT etc,, I developed pain with sitting in 2009..I suspect a nerve block possibly put in the wrong place etc.. set off my PN sit pain...In 2011 I developed additional pain in the outer anal area, following a peripheral nerve surgery...the scar tissue from the surgery probably the cause. This has been the worst as the pain kicks up on contact when I try to sit or kneel against a pillow. Thus I lay down a lot as the anal pain also comes with standing.. rectal suppositories help a bit,but we are still trying to find an effective pain med I can tolerate.
I so understand the isolation of not being able to go out to dinner or have a social life..Its very hard on my family as well..The hardest is having to miss special events in my kids' life.
With that in mind Ive got to come up with something that allows me to sit even for short intervals..for the time being.

I admire your ingenuity in modifying the chair to your needs.. Where is your pain and what part of your body touches the chair?..Would love to be able to design something like you have done! My husband is much more talented than I am in building or modifying things., so he could do it for he.. I'm not worried about it looks to the public...Getting out would make a world of difference to me.
Would appreciate if you could tell me how you position your body in order to sit with your chair and leg cushions etc ...I know we are all different in our pain locations..
Thanks very much and best wishes.

Hi Redriver -

I have had to resort to a reclining wheelchair as well. As much as it sucks, at least I have the option of going places that I couldn't go before. My wheelchair tilts and reclines. Tilting means that the seat actually tilts, rather than staying horizontal. The tilt feature is powered. Plus the back part reclines by pressing a handle, like a car seat. The chair itself is not powered, so I do need someone to push me around. I can't see where I am going all that well when reclined, so I thought I would need someone to push. My wheelchair was paid for by my insurance. I had a doctor's note and an occupational therapist's assessment for the insurance company, and they paid for the chair (over $8000.00).

I know what you mean about people giving you funny looks when you get up and walk. I get the same thing. The wheelchair has been handy for attending specialist's appointments where they would not allow me to use my reclining lawnchair. They can't refuse the wheelchair. I haven't used the chair to go to restaurants, as I can't eat when reclined. Do you sit up more at restaurants? How do you fit under the table?

How heavy is your wheelchair? Do you take it places in a vehicle? What kind of car do you have? We have a minivan, but we haven't outfitted it for the wheelchair, other than taking out the middle seats. My husband puts the wheelchair in the van through the sliding doors. If you have any tips for transporting the wheelchair, I'd like to hear them. Thanks!