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.

The search begins (this is my story…part 3)

I’m not sure what the record is for number of tests and trial treatments someone can go through before finding a correct diagnosis, but I must qualify for at least an honorable mention.  I was treated for urinary tract infections, yeast infections, and Interstitial Cystitis (IC).  I took the IC medication, Elmiron, for seven months before moving on to the next potential diagnosis (you should check out the side effects sometime…not exactly pleasant).  After almost two years of looking for a diagnosis, my Nurse Practitioner had to pass me on to the M.D. who worked out of the same office.  He reviewed all of the treatments I had already tried and jumped straight to a laparoscopy to check for endometriosis (quick lesson learned that’s worth mentioning here…NEVER agree to surgery without at least a second opinion!).  Of course he found nothing that could be causing my pain, so then he referred me to a urologist.

I can’t explain how utterly helpless I felt at that point.  I remember running into the Nurse Practitioner in the hallway at my post-op appointment.  She was very kind, asking me how I was doing and whether the doctor had found endometriosis.  I did my best not to break down in the middle of the waiting room, but I couldn’t hold back all of my tears.  (Keep in mind that it had been almost three years of searching for a diagnosis through tests, treatments, even surgery, and all the while I was enduring sexual pain.)

I went to the urologist next and she went about her own painful search for a diagnosis.  First there was the catheter to get a “clean” urine sample (I put this pretty near the top of my list of torture techniques).  Then there was the cystoscopy which confirmed again that I showed no signs of IC (also on the torture list, but at least they try to give you something to dull the pain).  And, eventually the MRI of my bladder which also provided no clear indication of a diagnosis.

I took a break from my search at this point, too worn down from the journey and not knowing where to go next.

No, really, what is wrong with me? (this is my story…part 2)

Doctors are supposed to figure out what’s wrong and then fix it.  At least that’s what I thought when I first started my journey to find out why sex was so painful that it would bring me to tears.  It is not easy to talk about such a personal and intimate subject—at least it wasn’t for me.  The Nurse Practitioner I had been seeing for my annual appointments was kind, sensitive, and female—all important attributes that allowed for me to open up about my issue.  Her initial responses, although well-meant, did not help much to alleviate my ongoing self-doubt and hopelessness.  I felt as though she were down-playing my symptoms when she discussed the importance of lubrication and adequate foreplay (as if all I needed was some KY to fix my excruciating pain!).

One of the best things she did for me at that first appointment was recommend a book by the Berman sisters which included a chapter about sexual dysfunction.  Although it didn’t give me any real direction on figuring out my diagnosis, reading their book helped me to realize that yes, there was definitely something wrong with me (well beyond the help of decent foreplay).

Thus, the treasure hunt began.