Endometriosis: The Sophistication of Severe disease leaves most in great pain and suffering.

Wonder why I am so dogmatic about endometriosis? this the normal course patients go through and if their disease “despite disabling pain, impact on intimacy, loss of education and career opportunity“ is not ”serious enough” they get sidetracked from effective care.

LILYWILLIAMSART.COM

My Endometriosis Story

‘Endometriosis is so much worse than a bad period’ My 14-year journey with the illness, in comic form First published in The Lily, a subsidiary of The Washington Post, in March 2019. To…

Worse if you have a child with endometriosis, “too young”. ”kids don’t get endometriosis, they don’t get adenomyosis”, “*Munchausen parents”, . Actually 70 +/- % kids with bad periods are likely to have endometriosis and just as likely to be dismissed. In some places they are not even offered relief once birth control has failed until they are age 18, although some countries are showing a crack in the age limit to 16/17 others continue to deny access. Youngest patients we have seen age 7 in the literature, age 8 seen by John F. Dulemba MD, teens are regularly left with peritoneal quality pain (think acute appendicitis with peritoneal signs and symptoms.)

So kids get the short end of the stick, but so do adults with less than stage 3 or 4 disease who are NOT trying to conceive. Given the severity of symptoms any amount of disease can generate this is a pretty awful.

Over and over, patients come to Nook having been told their disease is not “severe enough” yet it has impacted work, school, intimacy, exercise, social interactions with friends and family.

Repeatedly patients note loss of friends, intimate partners, and family support due to doubt about the severity of their symptoms and their failure to keep appointments or dates. Yet they are driven to pull back due to the severity of their pain.

A world famous surgeon was recently quoted in a news article noting women with endometriosis don’t have kids because they don’t want sex. WTF, acute pelvic pain with sex, BMs, pelvic exams is agonizing and in many cases due to co-existing pelvic floor dysfunction lasting for days. How awfully arrogant and misogynist of the “famous expert”, really bloody arrogant to not have more insight into pelvic inflammation that even a small amount of endometriosis can cause with resulting disabling pain, let alone minimizing the potential desire to have a child.

Gynecology is rapidly expanding skills through mentoring and teaching management of severe disease. Unfortunately, less severe disease, however disabling is getting side tracked in favor of those trying to conceive and who have advanced disease. The options are drugs with significant side effects, some of which were hidden by court order when the drugs company feared exposure of their fraud. Most patients report incomplete relief to allow for normal life and intimacy. (Pockets of better understanding excepted of course). The expansion of skills is severely needed but even as it is moving rapidly it is a drop in the bucket of what is truly needed.

But we are failing those children with endometriosis as well as those patients with less severe disease. The lost potential in their lives and our communities given 200,000,000 pts world wide is enormous.

• Munchausen Parents trying to get attention/sympathy by falsifying or exaggerating the symptoms their child exhibits.

NP