ENDOMETRIOSIS AWARENESS: MY STORY

March 22, 2019

Recently I found out I had Endometriosis after being sick for about 14 years. By now, you probably know I love to fight for causes I believe in… so this certainly won’t be an exception. From saving sharks to climate change action, I use my art and words to spread awareness. In an effort to erase stigma and raise awareness I have been open with my struggles with Obsessive-Compulsive Disorder and now, endometriosis.

Periods have always sort of been a BIG deal to me because they have basically controlled my life since I was 12. Having pain brushed off is something girls and women experience in the medical field and I was no exception. My periods HURT and not in a normal sort of crampy way, but in a brutal brutal way. This is coming from the girl who broke her arm and didn’t go to the doctor for a week because it “didn’t hurt that badly” (true story). Then due to the kindness of a stranger online, I found Nancy’s Nook Endometriosis Education (a private Facebook group, but now also a website). Nancy’s Nook Endometriosis Education is a research-based facebook group (not a support group) created by a former Nurse named Nancy Petersen, who has compiled all of the best endometriosis information and doctors into one place.

So, finally in 2018, after roughly 14 years of suffering in pain through misdiagnoses and horrible advice from doctors, I was diagnosed with endometriosis and had excision surgery with a Nancy’s Nook approved endometriosis specialist. For the first time since before puberty, I have my life back — and to think I used to think this physical pain was caused by my OCD!

Doctors who are not properly trained in endometriosis can easily miss endo, even during diagnostic surgery, and they can suggest solutions that can do more harm than good, like medically induced menopause, hysterectomy, and ablation (burning) of the cells. None of these approaches cure endometriosis and depending on where endometriosis is in the body, letting endo be mistreated can create larger health issues and cause long term damage (like loss of bladder function, kidney failure, and chronic pelvic pain).

Endometriosis is when endometrium-like tissue grows outside the uterus in other parts of your body. Endometriosis has been found all over the body including brain (though that is rare) and has been found in cisgendered men, postmenopausal women, and prepuberty girls. Endometriosis is understudied and not widely understood, causing there to be a lot of misinformation online and with most doctors (even ones with good intentions). While getting help is not one size fits all, excision surgery with a highly trained obstetric surgeon is the first step. Laparoscopic Excision surgery (LAPEX) is the “gold standard” of endometriosis care because unlike laparoscopic ablation surgery, excision cuts out the endometriosis cells at the root. By removing the root of the cell, excision leaves a recurrence rate of 10-15%. This is something that the American College of Obstetrics and Gynecology is behind on — they do not recognize this due to many complicated reasons.

To spread awareness and because I hope no one has to suffer as long as I did, I made a comic about it. This comic can be viewed in its entirety on THE LILY, published by THE WASHINGTON POST and can be viewed by clicking the title or image below.

‘Endometriosis is so much worse than a bad period’

My 14-year journey with the illness, in comic form

Please pass it along, share it with your friends and on social media to help me spread awareness!

It was my horrible periods and painful cramps that forced me to advocate for myself (in school, with friends, at work, etc). It turned out that my endometriosis made it so I talked about periods a lot more than the average person… which lead to me collaborating with my amazing friend Karen Schneemann, who I started a webcomic with called The Mean Magenta. Thanks to First Second that turned into a middle-grade graphic novel called Go With The Flow (that comes out in January 2020), which Karen and I co-wrote and I illustrated! Period inequity is a huge issue that touches so many different aspects of humanity. From socio-economic differences to the fact that it is very difficult to get real information about endometriosis/PCOS/adenomyosis/dysmenorrhea, let alone a solution to the diagnosis.

Thank you for following along as I continue to spread awareness and dismantle stigmas, whether it be with OCD or period equity. I appreciate your support because it allows me to continue doing what I do.