Saturday, February 23, 2013

My Story of a Headache in the Pelvis

At the very beginning, I would like to thank the doctors, psychologist and physical therapists who brought me out of an often painful 25 year existence with a disorder that no one seemed to know of. I'm listing these health professionals at the beginning of this article so readers may easily find them for a condition similar to the one that baffled every doctor I went to for two and a half decades.

Many thanks to:

Dr. Darlene Gaynor Krupnick D.O. of Leesburg, VA who was the first physician to accurately diagnose my condition and who told me that an important part of my recovery would be with the help of physical therapists who were trained in the treatment of Levator Ani Syndrome.  web info...

Dr. Steven D. Rubin, M.D., Long Island Gastroenterology Group, P.C. (Merrick and Great Neck, NY) for taking the time and patience listening to me and believing that I was neither a story teller nor a hypochondriac. Dr. Rubin now treats LAS as part of his practice.

Ann Duffy. PT, Duffy and Bracken Physical Therapy, Maiden Lane, NY, NY who provided physical therapy and education for my condition. Ms. Duffy utilized the latest computer and electronic tools to relieve pain and to learn to relax tensioned muscles.   web info...

Marilyn Freeman PT and her staff, Essential Physical Therapy, Great Neck, NY for helping me to take greater control of my condition by developing greater control of the effected muscles with advanced exercises and a more focused understanding of relaxation techniques.   web info...

Dr. Michael Zeiglebaum, Long Island Urology Group, Lake Success, NY who has been treating me for chronic prostatitis who has provided massage therapy to my Levator muscles during regular visits.

I would also like to thank David Wise, PhD and Anderson Rodney, MD who co-authored the breakthrough therapy and understanding of pelvic pain disorders. Their book A Headache in the Pelvis - A New Understanding and Treatment for Chronic Pelvic Pain Syndromes is now in a New Expanded 6th Edition available from Amazon. com in either Paperback or Kindle Editions.
    Paperback Edition Kindle Edition

To those who are visiting this website…

This blog is in its beginning stages. Although much is already written, there is still a lot of editing and re-writing to do. But  I can tell you that I really do believe that there is a miracle in progress.

Although I’ve been a system analyst, air traffic controller and pilot/flight instructor and I’m no stranger to critical thinking, I also consider myself an “intuitive” as I’ve found myself making seemingly irrational decisions, that surprisingly, turned out very well. And one such irrational decision that occurred about a month ago caused me to stop work on another blog (about computer security) and begin work on this one. Simply stated, I was speaking to a stranger about a very mundane subject having nothing to do with any medical subject when I suddenly began addressing a pelvic disorder that resulted in very serious pelvic pain. That in itself is quite irrational, but when I mention that this stranger was of the opposite gender, you may understand how irrational I was to do what I did. That happened on a Friday.

The following Monday I had a scheduled appointment with Dr. Rubin (mentioned above) and I felt compelled to tell him about my totally irrational behavior with a woman who was a total stranger. You would think a doctor might react in some authoritative way such as counseling me about speaking to absolute strangers of the opposite gender about pelvic pain, but he didn’t.

Instead of  his usual doctor-like bedside manner, he became incredibly lively telling me a story that shocked him as much as my story shocked me. He told me that two weeks before my visit he had one of his patients in his counseling office who was in absolute tears thanking him for changing her life. I answered by reminding him that he had told me the same story about similar miracle, both of whom were women. He then emphasized that he knew that my condition was very painful, but is was nothing as nothing compared to what these patients had experienced.

Then Dr. Rubin became even more astonished at what happened and told me that he received a memo from the superiors in his field of gastroenterology indicating that all doctors who treat medical conditions in the pelvic region are being told about the condition that I and his two other patients have. And this is incredibly significant because the treatment of this condition requires physical therapists that are trained in this disorder. In the summer of 2008 when I first started the program proposed by Dr. Darlene Gaynor, there were only three physical therapy offices within 100 miles of the NY Metropolitan Area who treat this condition. In a recent Google search to locate physical therapists who now treat pelvic pain, the number of returns show that there has been an influx of PT’s who are now treating this condition. Google it yourself by clicking the link below…

'Physical Therapists who Treat Pelvic Pain'

And if you would like to get free information as to what these PT’s do, you might click the link below for a search for physical therapists that treat pelvic pain pdf…

'Physical Therapists who Treat Pelvic Pain PDF'

I can only suppose that, with the release of the memo to urologists, gastroenterologists and ob/gyns, there will certainly more physical therapists that will become trained in this area. From what I knew in 2008 and what I’m finding out now is that a miracle IS in truly progress. But there was one more thing that Dr. Rubin told me during our discussion… And that was “Now you go back to see that woman and tell her all about this!” You can imagine what my reaction was to that! (Omigod!)

The one thing that I had in my favor was that, telling this wonderful stranger about my pelvic condition was only the first of two quite irrational things I did that day. As it was, she reacted very positively to what I told her, and as you can imagine, I was very glad about that. And as I was leaving, I can’t believe I said the words “Maybe we’ll see each other again?” And she said “Yes, I’d like to see you again.” But it still wasn’t that easy.

I knew I was only entitled to a few moments with here and there certainly wouldn’t be enough time to cover everything I would have to tell her, so I had to find a way to get that done. And what do you know? I had actually mentioned the solution to her in our first conversation. I had told her that two doctors had asked me to write a blog about my medical condition. Neither of them knew one another, and I didn’t mention to the second doctor what the first doctor said. Both of them were anesthesiologists and neither of them had ever heard of my condition. With that said, I knew that there was only one way that I could tell this wonderful person all the things my doctor asked me to. And this is, to stop work on my previous blog and start this one.

The next very difficult part was to actually go back and tell this woman about my blog. The level of difficulty was increased by the fact that she is a very attractive woman who is probably less than half my age.  It took three tries to go to where she worked before I got to see her, and luckily, I missed her on the second try, but I was told to come back in about an hour so I was able to tell a coworker that I would come back and I gave him my name so it wouldn’t be such a big surprise.

I did mention to her that I had no idea as to why I told her my story, but on my trip home all the parts of this story fell right into place. If I hadn’t been irrational that day, I would not have had anything to say to Dr. Rubin about my pelvic pain (as far as we’re concerned, that’s history). And if I hadn’t told him what I did, he would not have mentioned the second miracle that his patient told him about and he would never have had to mention anything about the directive he received from his superiors. And he certainly would not have given me his “doctors orders” to go back to this woman and tell her all about this. And the bottom line is that I would still be working on my computer security blog and this one would be staying on the back burner, and as for how long, who knows?

Another item that also seems to be quite timely is an email I received from a woman who was also a stranger when we first met. She is an activist against commercial composting which we both claim causes violent reactions in some people. Most people have normal allergic reactions like cold symptoms, but others experience asthma and sometimes anaphylactic shock (which can result in death). I am seemingly in a class by myself, but I know for certain, the fungus in commercial composting directly causes my pelvic pain. As it was, I found her email address in my address book and I decided to write to her about her website. My email began with the words “I don’t know if you remember me?” Here is how she replied…

Tuesday, March 5, 2013 9:48 PM Email...

Wow is all I can say Ed!  First of all, I absolutely remember you and your heart wrenching story.  You left quite an impact on me, and gave me a purpose for my crusade.  As much as they all wanted me to believe I was crazy linking my daughter's illness to the compost, I knew differently...Knowing you experienced such adverse side effects kept me moving forward…

For those who have found this website via a search engine, please know that you can find out more about me and what I like to do at my personal website…

One of the things that I like to give personal friends is my Tribute to Shoeless Joe Jackson who lost his right to play major league baseball by being falsely accused of taking a bribe to throw the 1919 World Series. My research shows that Shoeless Joe found $5000 wrapped in ordinary brown paper on a night table in his hotel room. He re-wrapped the money had had somebody address the package to his wife (Shoeless Joe didn’t read or write). When his wife received the money, she sent it to the owner of Shoeless Joe’s team (the Chicago White Sox) telling him that neither she nor her husband wanted any part of it. Joe had a great series, no one was convicted of any crime, but all eight of the alleged conspirators were fired and removed from baseball forever.  I gave that wonderful young woman an autographed copy to thank her for being as wonderful as she was.

You can download Shoeless Joe the Music via a link at the bottom of my personal website above or click here...


  1. Hi, i suffer a cronic pelvic pain, could you send me the bool of david wise please?

    Thank you.

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