Health Organization for Pudendal Education

Thanks so much for your kindness Violet.I am jumping through all the hoops hoping to find the right combination of meds and therapy that will help me on my journey to wellness.Sometimes I still cannot believe that all of this is happening to me.I find it helpful to find the little blessings of each day.It is a strategy that allows me to function!!Thanks again for your empathy. Hugs,Lise

If they have surgery, at least you got a chance. If not, you will keep it forever.

I am in this category. The Answer is no. Unless the surgery works.

p.s. it is right chasing a rabbit down the yellow road, there is no gold at the end of the rainbow? Is there?
I would prefer to be well, then to have the gold and you can keep the rabbit.

I agree with you there, Tabitha. Health is one of our most prized possessions and it can be difficult to enjoy life without good health.

Violet

My physical therapist has said that she had seen a lot of people get better from this. I hope it is true. Just taking medication and not sitting has taken most of my pain away.... But not all and not sitting is not exactly how I want to live the rest of life. I am pretty sure that it was an infection that caused this problem for me, and my therapist believes that the nerve is not entrapped...just irritated. I have to say it is very depressing to read so many posts here. There is little information about this condition and so much here just says I will never get better. I hope it is not true.

I have had glute pain for 7 years, ever since the PNER surgery which was supposed to cure it. After 7 years of extreme glute pain, I found a pain mgt. doctor who diagnosed it as Piriformis Syndrome. He referred me to a colleague of his who will inject it with Botox soon.
I have to be careful about what exercises I do and I stand most of the day as sitting hurts. I use a chair pillow all the time when I do sit. Relax the Back sells a variety of them.
Check out piriformis syndrome if you have glute pain which never goes away. I'm on Neurontin which barely touches it and can't take any more as I get spacey. I can't take narcotics. I use a TENS unit and ice which are helpful.

Sara, lots of people get better and move on from the forum. Often the current posts are made by people who are having a lot of problems at the moment and that can be discouraging. If PT is helping I think that's a good sign.

Take care,

Violet

This has been my hell for the past 6.5 years. I try so hard to just wish it away. I want so badly to have my life as it was before this miserable affliction. I force myself to do things like go shopping, go out to dinner but its ugly head keeps weighing me down. I have come to believe that people really have come to believe that no one can have this pain for this long. They ask, I tell the truth. It is just hard for them to hear. I am off narcotics 5 weeks as of today. They all, meaning family friends think it is wonderful. At least the drugs led me to believe the pain was less. At the same time I feel I was ruining my mind and body. There are simply no easy answers to this pain..I have submitted to this. I have no choice. Sciatic, gluteal pudendal pfcn. God only knows what else.
I really believe if this condition is caught early enough, there is more of a chance for recovery. The longer it continues, the more damage to nerves that will never heal.never free of pain. Mine was caught way too late. Extra strength tylonal is what I am taking plus 3000 gabapentine a day. I just needed to vent. Sorry.

I need to apologize for being so negative on my last post. Have p.nueropthy. I am counting my blessings today. I just need to pace myself to keep the pain minimal. I am lucky enough to be home where I can do this. I have accepted the fact that this will be with me always. I do concentrate on the things I can do. I take 20 min walks, I started painting abstracts 6 years ago .I needed to do something constructive while standing. I lye down to knit.
The best thing I have done is come off of the opiods that I was on for 6 years. Oxycontin was my devil. It will nbe 6 weeks soon. It was hell coming down, but I did it. I am still on 3000 mg of gabapentine a day with extra strength tylenol. My family is so relieved , I am relieved. I still have hope that maybe one day I will have less pain, be able to go out for dinner, just the simple things. I am at peace with myself. My granddaughter said to me, Grammy, you are enough. That comment helps me to stay strong. We have to. Love to all of you that have all 4 cylanders burning. I dont remember who said it, I read it a couple of days ago ..Right now on ice I just have 2 burning. We have to keep a sense of humor . I thought that statement about the 4 cylanders was so darn funny. If we don't laugh we cry. Lets keep trying to laugh. You are enough. Ellie