Health Organization for Pudendal Education

Hello,

I am completely new to the board: I've just found it and it seems great - I am really hoping I have finally found a community of people who actually understand. Hello to everyone. I have been suffering with chronic pelvic pain now for 7 long years. I have basically reached the end of the road in terms of my patience. I am now experiencing a bout of (horrific) pain every morning when I first wake up, every evening, and often during the day. I have a job which I try to attend every day, but quite often I have to go home to have a lie down which I feel terribly guilty about. I have so much anxiety about work, coupled with the fear (that never goes away) of being in pain. I feel like such a burden on my boyfriend (who is very supportive) and my family. The anxiety and pain gives me nausea and the opiates make me forgetful and tired. I'd really like to know there's someone out there reading this who understands. I don't know anyone else with it: most doctors I've spoken to have only heard of it, read about it in a text book somewhere, and not come across anyone who has had it before. That can make it feel very lonely.

You are not alone we understand and are there with you going through this! Anxiety was an unknown issue until I started taking Gabapentin and that was lifted some and then I realized how bad it was. Yes very few people understand including doctors, of tge 7 I was seeing for many areas only one had heard of it. My husband is driving me to work daily and appointments after but is very supportive and just wants me to get better I am sure the similar is your case. People want to help but it is hard to take help. The drugs do many things and my loss of attention to detail is tough as that was my strength. I am on the other side of surgery and getting better but the early days were very horrible trying to get through 5 hours a day at work. Fortunately I am now working up to 6.5 hours, there is hope. Please check out the PT list and doctors to get help from people who know zbout this and can finally help you.
Janet

Raylight, you are not alone but I understand why you might feel lonely. Before I had a diagnosis I felt like I was the only person in a large metropolitan area who was experiencing what I was because it seemed like every health care provider I went to had never seen anyone with the same symptoms. Finally I ended up seeing an experienced physical therapist who knew right away what the diagnosis was. That same day I found the PNE forum and it was very validating to know that I wasn't the only one in the world with this after all! I hope you will find some valuable information here that will help you figure out what treatments you need.

Best,

Violet