ENDOMETRIOSIS: Lose the flame thrower he said. (not said by David Redwine, whose compassion would not tolerate this)

Shared with permission of mother and patient. Three years of suffering, shuffling, lost potential, lost dreams, something we see every day in Nook. Simply unacceptable and shared with permission of mother and child. Give me a break, its time gynecology grew up and was held accountable for such neglect (pockets of excellence excepted of course. But one major clinic need a trip to the woodshed)

"Everything changed when my daughter turned 11 years old on 7/8/09. She got her period for the first time at her birthday party. Little did anyone know that her health would start deteriorating only a few short months later. First it was her bladder and then her bowels. She had pain in her stomach so much that we had 3 hospitalizations at 3 different hospitals for “GI” problems in a very short time.

Her mental health deteriorated as well. She was diagnosed with ADHD and Anxiety. The drs are even questioning a mood disorder now at 14 years old. She went from no meds to a bag full of meds daily. Specialist after Specialist and never any real answers. We even took her to Cleaveland Clinic and were told “we have a perfectly fine daughter”. They refused to let us see one of their OBGYN specialists there even when I begged. I said I know all of her problems are related somehow to her womenly issues. Another dr at a hospital said my “nerves” (Me the Mother) probably help make her stomach hurt. One hospital said it was her anxiety causing everything. My husband even started questioning what was what and doubting my advocacy for her. I stayed determined to find answers. Three and a half years into this journey my daughter’s pelvic floor therapist suggested I reach out to Nancy’s Nook FB page. I never ever heard the word “Endometriosis” come out of any professionals mouth before. She was going to teams of specialists out of our area so how is her local pelvic therapist going to be the one to figure this out? I would take any recommendations at this point so I contacted Nancy’s Nook and got an immediate reply. On a Friday evening Nancy got ahold of a Pediatric Gynecologist Nook surgeon. By Monday morning I had an appointment all set up with Dr. Chan in Pittsburgh for two weeks later.

Today my 14 year old daughter had her laparoscopy surgery and had an IUD placed. We anxiously waited and watched the time tick by. We knew the longer it took the more likelihood they found something. When Dr. Chan finished and came out with pics of the Endometriosis I just cried. These last 3 years of trying to find answers and getting shuffled all over the state came down to those pics of validation for my daughter. It was overwhelming.

When my daughter woke up from surgery these were her first words to me.

“These are of tears of joy.” “All my years of stomach pain ..I can’t believe it. It is a miracle..it is the best thing that ever happened to me. All these years I could have played sports and continued playing my basketball..now it is too late”. “I could have done more things if I had this surgery before now.”

We cried together. Thank You Nancy’s Nook and to all the supportive people on the FB pages. Don’t ever give up advocating even when everyone else is doubting you and your child."

Special thanks to Dr Serena Chan at UPMC who accepted the referral from us, without obstructions, we greatly appreciate her help and skill.