Two days after a long airplane trip from San Francisco to Amsterdam I started to suffer from nearly unbearable Right Lower Quadrant very focal pelvic pain. In my reports to all doctors, I always referred to the focal pain as "from my umbilicus 30 Degrees to the right and 2 to 2.5" down.

When I returned to SFO a week later, I began a 12-year journey of PAIN, severe weight loss, a year in bed, no ability to sit or stand, and a plethora of doctors in a rush, surgeons who made terrible misdiagnoses, psychiatrists, pain specialists, and "red herrings."

Six pelvic surgeries, several totally unneeded, because of one surgeon's rushed and irresponsible diagnosis: I went through a total hysterectomy because this surgeon hastily diagnosed me with severe endometriosis (in a 67-year old woman with no gynecological issues ever), called in another doctor to "also immediately confirm" his own diagnosis, and then not taking biopsies, The Golden Rule! How wrong he was!

During the hysterectomy, the OB/GYN surgeon from another hospital, did take biopsies, which all turned out to be India Ink Tattoo spots, no endometriosis whatsoever. The India Ink Tattoos were left in my intestine during several endoscopies and balloon-enteroscopies. Somehow, they were scattered all through my pelvis. In several official NIH articles, they published how India Ink spots can mimic endometriosis, hence the importance of taking biopsies.

Additionally, I suffered through colonoscopies, enteroscopies, resection of my intestine, cystoscopies, hernia surgery, many Xrays, CTs, Ultrasounds, MRIs, and the eternal blood and urine tests.

Doctors quickly put me on heavy narcotics: Fentanyl, Hydrocodone, Percacet, Morphine, Gabapentin, Losartin (the pain increased my BP dramatically, and Duloxetine (against severe depression.) Heavy medications make it easier for the doctors but not for the patient.

As a result I lost a high-paying job in an excellent computer company after a year of sick leave, during which they were very good to me. I could not travel anymore, we barely went out, and the first years of my retirement, which should have been lovely after 45 years of working, became home-stays.

Because of an article in the Washington Post recently, I found a retired doctor who was featured in one of the medical stories. I was able to contact him through the WP, to whom I had sent my story, asking to get in contact with this surgeon.

This surgeon, a wonderful human being, gave me ample time over the phone, nearly daily internet communications, asking me many questions, having me fill out a critical questionnaire on visceral abdominal versus abdominal wall pain, and finally carefully narrowing down all the knowledge of my twelve-year pain journey to the condition of ACNES. Unbelievable, but true. Two surgeons during the past 12 years had this solution in their hands but did not finish their quest.

This coming Thursday, I will see a pain specialist who has agreed to do an abdominal wall injection with lidocaine and possibly cortizone. I am extremely confident (based on similar injections in the past (but without medical follow-up) that ACNES has been the cause of all my pain and suffering over the past twelve years. If the injection once again is positive, I plan to contact Dr. Gillespie in Phoenix, the expert mentioned in many of the previous patients' notes.

My advice: Be your own advocate, investigate, look for other people's experiences, and never, never give up! On our own, we are small. As a community, we are strong.