Health Organization for Pudendal Education

Hi Betty,

Welcome to HOPE. You are among friends. I'm sorry for all the troubles you've had and for your epic journey to obtain a diagnosis and a cure. I am sure that with time and rest you will heal. Please keep in touch and ask us as many questions as you like about coping with and managing your pain. We've all been there.

All the best with your continued recovery.

Lernica

Betty,
I like the Airgo Active Seat Cushion from Amazon. Hang in there. You are still early in recovery.

Best Wishes.

Don

I asked Dr Renney if he was pion free and he said only about 75%. I would be happy with 75% relief. I know it has only been 4 months but it feels like years. I have tried cymbalta, fentynol, lyrica and I have bad side effects from these..nausea and headaches. What else has anyone found that helps the burning pain? I love to walk but I find that that is causing me more pain. Is anyone else doing any type of exercise?

Betty, I know Dr. Renney didn't get total relief, but you're right, it's important to be able to accept whatever you can get. He told me that he takes Klonopin if he gets a flare sometimes. It's like Valium, and lots of patients use one or the other. Have you tried either of them? You can take them with other things if there's something that you find that does help.

I have the same cushion that donstore recommended - Togu Airgo Active Cushion - and it has made a big difference for me. it is particularly helpful when I have to sit on a firm surface, such as a car seat. It is expensive but very well made, and you can inflate it more or less as you choose, it comes with a little pump.

With regard to medication: there is amitriptyline, nortriptyline, and gabapentin. All have varying amounts of side effects, but there are many people on here who are taking various combinations of these to good effect. Also there is tramadol - I have found the slow release version to be better at damping down pain spikes, and it is also easier to stop taking than the ordinary sort.

But the single biggest help for me has been from the psychology services at my GP - CBT for help with pain management.

Betty wrote:I asked Dr Renney if he was pion free and he said only about 75%. I would be happy with 75% relief. I know it has only been 4 months but it feels like years. I have tried cymbalta, fentynol, lyrica and I have bad side effects from these..nausea and headaches. What else has anyone found that helps the burning pain? I love to walk but I find that that is causing me more pain. Is anyone else doing any type of exercise?

Betty,
It is imperative to increase the dosage very slowly. In fact much more slowly than what the manufacturers recommend. It is the only way to avoid as much as possible the side effects that come with that type of medication.