The number one thing a person with pudendal neuralgia (or suspected PN) can do is limit sitting and sit on a cushion that takes pressure off the pelvic floor. I went about 6 months after my pain with sitting began before I started using a cushion. I wish, looking back, I had started using a cushion earlier so that maybe my symptoms could have been minimized more, but I didn't know really what was going on those first few months. At first it's a little embarrassing to carry around a cushion everywhere you go, but now it's almost second nature to me. The pain is not worth it. If I don't sit with a cushion I have to "side sit" on my hips or try to sit on my feet both of which are not good for my body and often cause referred pain in my back and hips.
This was the first cushion my husband, Mom, and Dad helped me make. It is an 18" molded donut cushion (like this one) duck-taped onto a plastic toilet seat we bought at a home improvement store and covered with a pillow case. The toilet seat is necessary to provide enough support to keep me off the seat when I sit. It's a beauty, I know!
I sit on this cushion vertically instead of horizontally like intended. Since I can't tolerate anything to touch my "sit bones" we cut away at the donut to take the pressure off those bones. It's not great, but it is better than nothing. The donut cushion is really best for folding chairs or if my back isn't going to touch the back of a chair otherwise my coccyx will have too much pressure on it, which also causes me pain.
That's why I found this cushion. It can be found here. It is sloped, 3" in the back and 1" in the front, and is made of a very firm foam. It's the first foam I've been able to sit on without it collapsing and putting pressure on my pelvic floor. I use this one in the car or sitting in the pew at church.
In order to keep my "sit bones" elevated while sitting, my husband had to cut this cushion at well. We wrapped duck tape around it to keep it from ripping due to the pressure when sitting on it. Cutting it did decrease the integrity of the cushion, but I've been using it for the last 9 months without problems.
I really stopped using the first cushion almost completely when I found this cushion, but after the botox injections this cushion has been really firm for me. It seems to hit too close to the sit bones and causes a lot of burning. I used my first cushion this week at church while sitting in a folding chair and was able to sit for about 20 minutes. So, I am on the hunt again for a new cushion especially one to use in the car.
I have tried probably 15 cushions over the last year, including an expensive Roho wheelchair cushion. But I am not ready to give up and stop sitting altogether so I will keep looking. That's one of the main things I've learned about living with a rare chronic illness, you can't give up. Even when doctors can't help or tell you "it's all in your head", you have to keep looking. You have to be your own advocate. It's easy to quit, but if you do the only one you hurt is yourself. There may come a day when I no longer can sit at all and if that day comes I know God will give me the grace to endure, but until then I will keep looking for a way to sit a little.
I've been looking at these cushions some, but I don't know that I'd be able to cut them so my sit bones don't have any pressure on them. Any of my readers have any suggestions?