Health Organization for Pudendal Education

Good morning
I am new to this forum and new to PN. I have been struggling significantly for 20 long months. I have seen atleast 10 doctors, have been put on 13antiobiotocs as they thought I had Cdif from a full hysterectomy. (Which was suppose to be partial). I have lost 50 lbs and am reduced to laying 20-22 hrs per day. I have lost the hair on the sides and I'm back from laying so much and the friction of going from side to side. The pain is incredible and I was finally diagnosed a few weeks ago. I have had steroid injections (which lasted hours) and there is only one dr who (supposedly ) treats this, however his reviews are deplorable. I don't know where to go, who to ask for and how to try to support myself. I am 55 and I'm otherwise good health. This is just horrific for me and hope for a healing of this is looking mighty grim. I would be grateful for some guidance.
Thank you
Laurie

Hi Laurie,

I'm sorry you are having a rough time right now. I guess I don't really have enough information to give you specific guidance but if you haven't already been evaluated by a PT who specializes in pelvic floor pain, you might want to try at least a few sessions of that to see if it helps at all. If you have been ill for 20 months already you might be close to qualifying for disability which could help some with support financially. http://www.ssdrc.com/state-connecticut- ... arted.html There are people who have applied successfully on their own but some people choose to use and attorney but they would take a cut from your check. You could also see if you qualify for some type of home health care if you are pretty much confined to your home. Are you able to travel to see a different doctor if you aren't confident in the one who is in your area, or is travel out of the question? I will send you a private message with some more information.

The list of CT physical therapists is at the following link: http://www.pudendalhope.info/node/63#CT

Violet

Thank you Violet.

I have used the resources here to locate a physical therapist as well as a physician. It is truly exhausting as they do not accept the insurance or simply do not treat the diagnosis. I have never seen this. I have some resources however, they are so far away, I cant sit that long to even get there. I see a pain specialist for the first time in my life and I don't even know how to describe this severe debilitating pain or what medication will work. I have successfully emptied a full 500 pill bottle of tylenol, am allergic to nsaids and am just beside myself. I am trying to get the vaginal valium suppositories approved to see if that will help. This pain is one that is ... well I don't have to tell this group.

Thank you again,

laurie

Laurie,

Unfortunately insurance has been a problem for other people too.

I sent you a private message which hopefully you received.

Violet

Whenever I read of the insurance problems you have in the States, my heart hoes out to you. I hope you can find a resolution soon.