ENDOMETRIOSIS :CARE DRIVEN BY MYTH, DISRESPECT, FAILURE TO KNOW THE DISEASE

While it is early to know the outcome long term, we can say the the psychiatric referral did nothing for her except an alert therapist suggested a chronic disease might be present. Two years of suffering, being drug from doctor to doctor to pedi/gyn specialist and no one except her therapist thought her classic endo symptoms currently destroying her quality of life might mean she could be helped. This is not an isolated situation, it is something we run into weekly, kids denied care, referred for counseling, no consideration they are living their lives on the couch, missing the most important time in their lives for social skills development, for determining life direction. I see kids in Europe, in South America, USA, Canada, England, Australia and New Zealand, Asia suffering while in our arrogance we ignore their classic symptoms, put their suffering down to mental health or immaturity, and fail to intervene. Below is her mother's post, we have encouraged the mother to not put guilt on her self, this is a broken system with the exception of pockets of excellence. Managed medically? I think not. When will the industry grow up? Actually those around the world who think this can be managed medically should feel guilty at the suffering medical management is perpetuating.

“My 15yo is about 72 hours out from excision surgery with Dr. Liu in NYC. Even knee deep in recovery, to say this is a different child would be an understatement. 18 endometriosis lesions found across her left pelvic wall, right pelvic wall, bladder and rectum.

As mama, i am going through a wide range of emotions - guilt, sadness, anger, relief, etc. Two plus years of not knowing what was wrong, dismissed by the pediatrician, gynecologist, GI doc and urgent care. Finally it was her therapist, who said looking at his notes, she seems to have a chronic illness and have we looked into PMDD or endometriosis. A quick text to my sister in law confirmed that my mother in law did indeed have endometriosis.

The next morning I was sitting at my hairdresser sobbing. Another woman came over and had written on a post it note the name of this group. (Nook, pt education group for endometriosis) She gave me a big hug and said join and start reading. And that's the day our lives changed...

This child has missed so much - work, school, fun with friends. This is not how the teen years should be. I will be forever grateful to this group and it's knowledge. I am on my own mission to become an advocate as the state of women's health in the US is not where it should be.

I highly recommend Dr Liu and Lenox Hill Hospital (although driving in midtown NYC is not for the faint of heart and I am a native NYer. Dr Liu also operates at the Jersey City Medical Center for those uncomfortable with insane city driving).

I look forward to sharing more of her recovery story as time goes on. Thank you to everyone! “

The post garnered almost 40,000 reads overnight patients are outraged at gynecology’s failure to care. (Pockets of excellence excepted of course, but there are far too few of them. And the standard of your disesase isn’t bad enough to deserve surgery is outrageous really, a feather to big pharma’s profit motive, nothing more.)