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.