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lhwang03202427 karma

OP, I actually have the same condition as you. It took me 5 years to get it treated properly, but I finally found a urologist and physical therapist who have been able to help me.

Here are some tips. I'm no doctor, but I've lived this condition since I was 22, and I'm now 29. The 5 years leading up to my proper diagnosis and treatment were some of the darkest of my life. But you can regain control of this condition (maybe not a "cure") but it is very manageable.

1.To get you started, I would recommend that you read "A Headache in the Pelvis," (http://www.amazon.com/Headache-Pelvis-New-Expanded-Understanding/dp/0972775552). This book was a real eye opener for me, and a bible in terms of treatment methodologies and understanding this condition.

  1. Familiarize yourself with the "Wise-Anderson Protocol" that is mentioned in the book.

  2. Find a urologist and mention this book. Apparently the authors of this book are a huge deal in the field of urology. Any decent doc should know who they are.

  3. Request a prescription for a "Pelvic Floor Physical Therapist." Most hospitals have them, and a good one will be able to help you out.

  4. See if you need an antidepressant of some sort. A lot of the pain and muscle tension associated with this condition is related to anxiety/depression. It's a nasty cycle--each one makes the other worse. You get anxious about your pain, which causes tension in your muscles, so on and so forth.

That's all I have for now. If you wanna PM and chat more, let me know.

Be strong, OP. your condition is treatable, and not as rare as your doctors may have led you to believe.

Edit 1: To whoever gave me Reddit gold, THANK YOU! The 20th was actually my 29th birthday, so it's much appreciated.

Edit 2: Wow, people. I am surprised (and glad) at the amount of interest this IAMA has generated. Thanks, OP for bringing this to people's attention. It's a unique and not-so-well known condition that should be addressed.

Edit 3: If you are suffering and have questions, PM me. I've already answered a few, and will try to help out as much as I can.

lhwang03201078 karma

I'm so sorry, OP. I wish I could help you more, as I know what you are going through.

Stay strong, and touch base with your urologist every few months. The field and research related to CPPS continues to grow. They will find a cure eventually!

lhwang03202 karma


But in all seriousness, I'm so sorry to hear about your situation...

lhwang03200 karma

Did the molestation occur in a marmalade forest, between the make-believe trees? In a cottage-cheese cottage?