Health Organization for Pudendal Education

hi, wondering why they don't make them large enough so that perineum and tailbone area both hang freely like it feels on an actual toilet seat?? anyone know any differently, thanks,pdn ps.also posted this?? on cushion versus pillow reply

I just found one and I want to spread it to the world. It is a complete foam toilet that is made by Pegasas and you can find it at Home Depot. I just took the lid off and the bumpers. Not sure how I will cover it so it looks inconspicous but just being upright in my home is fabulous. I also have to say that I used Voltaren gel (over the counter) on my tailbone first. I have used that gel for years for arthritis.

Kate

Now I have cut up an old cushion in the shape of that seat and I'm going to glue it to the bottom for more cush!!

Kate

I have a donut (molded foam 17") cushion that I duck taped onto a toilet seat. I use this sometime, but really I need the back out of it. I can't lean back if I use it because I can't stand my sacrum/tailbone touching anything. So I use a slanted u-shaped cushion and cut extra space out of it so that my sit bones do not touch. It's not great, but it's the best I have found.

The only time I am comfortable is when I'm sitting on the toilet. I've tried just a toilet seat, but I'm about ready to buy an entire toilet for my sewing/computer room. This thread has really given me some ideas. I am just so tired of the pain. Right now I'm doing Valium and topical Lidocaine. The Valium has certainly enhanced my mood. The Lidocaine is useless. Next step is the Fentanyl Patch. I don't respond to opiates, but at this point I'm desperate as I have severe Emphysema and the two together is just too much. Thanks to all for your postings.

Missmarple, have you had the opportunity to try some of the other meds for neuropathic pain? It is a bit of a big jump to fentanyl, especially as you don't respond to opiates. What about amitriptyline or nortriptyline, I know you've tried duloxetine (Cymbalta) and had problems, maybe a simpler drug might be worth considering. And there is gabapentin too. I know you've tried pregabalin (Lyrica) already and had problems, but there are people on this forum who've had similar issues with pregabalin and get on fine with gabapentin (Neurontin).

Personally the only thing I find lidocaine helpful for is the PGAD, and we've got that under control now anyway with tramadol.

I hope you get a good cushion sorted out, it does make a difference when you find something that helps.

I don't think there has been anything over the 22 years that I haven't tried. You name it - I've been there, including Tramadol, IC cushions - the lot. The Valium has definitely improved my incentive and I would much rather stay on it than go to the Patches. My PCP is concerned about my becoming addicted to the Valium, but at 73, I don't see that as a problem and it does not seem to be suppressing my breathing. I'll keep you informed of my progress.

I agree with you, I think you should go with what helps. After all, what are the meds there for in the first place?

I wanted to let you know that my mother has made me 3 toilet seat cushions. They are about the only thing that I can sit for a few minutes. I take one with me every where.
Lanie