The path to a right diagnosis (this is my story…part 4)

The pain continued, and in some ways seemed to get worse.  But in the end it wasn’t the pain itself that led me to start my search again.  By now the far reaching effects of sexual pain had imbedded themselves into my subconscious.  Sex always led to pain, and physical affection often led to sex.  Thus, I eventually started avoiding affection altogether.  My husband took about as much as he could handle and finally confronted me about it.  It was this reminder and realization that my marriage lay in the balance which gave me the momentum to begin my journey again.

With the psychological effects becoming clear, the next step on my path was to see a sex therapist.  She had some positive advice on how to start the process of unraveling the psychological aspects of prolonged pain association.  The relaxation techniques she taught me were very helpful, but it became clear that we couldn’t make any real progress without first addressing the medical cause of my pain.

She referred me to a gynecologist who specialized in sexual issues.  He was definitely more knowledgeable on the subject than the doctors I had seen in the past, but I did not relate well with him at all.  I remember coming home from my first appointment, crawling into bed, and just sobbing.  Having to tell my whole story all over again of everything I had already been through—all of the unsuccessful tests, treatments, surgery, and the reality that I was still no closer to a diagnosis—just left me in a state of depression.  Fortunately, that doctor referred me to another urologist, who diagnosed hypertonic pelvic floor muscle dysfunction* and referred me to a pelvic floor physical therapist.

That first appointment with my physical therapist was the turning point in my story.

*Here’s my definition of hypertonic pelvic floor muscle dysfunction: when your pelvic floor muscle (that’s the extremely important, often neglected, sling-like muscle that holds all of your internal organs in place and allows you to “hold it” between bathroom breaks) is chronically tightened and shortened.  The best description I have been given is that it is like if you were to take your hand and make a fist as tight as you can and then hold it like that—for days, months, years—without letting go.  Even when you do let go it is likely that your hand will not open back up to its normal state very easily, and it will be incredibly painful.  This is similar to what happens to someone’s pelvic floor muscle who has this disorder.

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