Tuesday, November 15, 2011

Cushion Trials

I have talked about my need to sit on a cushion if I do sit, but I have never posted pictures of my lovely cushions.  Sitting is the most painful thing for me. If I don't use a cushion the area just medial to my "sit bones" will start burning and within a few minutes will feel like knives stabbing me.

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?


3 comments:

  1. Hi, I can relate to your pain as I have chronic sit bone (ischial) pain due to having to sit so much. I have significant back problems and can't do a lot but sit. I too have spent so much money in an effort to find the right cushion. If it's too hard, it hurts the bones so much that I just can't stand it. If it's too soft it collapses and doesn't help at all. I am in a quandary and have been for many years. As long as I was able to work as a nurse it was ok because I didn't sit much but now that I'm retired and with the back problems it's different. The pews at church are very difficult to sit on because the cushions are thin on the pews. The next day I am in so much back pain. I took a bad fall 15 years ago on my backside and have been in pain since. I have given up on epidurals and other injections since they don't seem to help. If I could find the right cushion that wasn't too hard or too soft I would be happy. The Lord has taught me much in the last 15 years. I have had two different types of cancer and still live with one. I have learned to lean on Him more everyday through it all. What a friend we have in Jesus. Just wanted to tell you that there are a lot of us that suffer with this pain and that I hope you find the right cushion for you. Bless you! Nancy

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    1. Hi, my name is Kim and i have pudendal nerve damage in both buttocks I've had 3 injections done first to see if it was the prudendal nerves and it was then 2 others one didn't work and the last one 2 1/2 weeks ago worked until 3 day's ago - I travel in any car with this seat that move with your body I bought at pharmacy and what a diff. it's made for me to drive and to travel in anyone's car. I have not tried to make a cushion seat but will now that I've seen yours for I also belive in the Lord as Jesus as my savoir and I'm thankful I have him.

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  2. Thanks for your comment Nancy. 15 years? Wow, God bless you. Amen, what a friend we do have in Jesus. Can't imagine dealing with something like this without Him! May He give you great strength in your weakness.

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