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Warning: Possible TMI moment.

I feel comfortable sharing here. While it’s still a “public” space on the Internet, it is highly unlikely that you’ve reached this blog without looking for it. I don’t like posting too much personal info in social media spaces; it feels ego-driven and disingenuous every time I start to draft a post implying that the details of my experiences warrant the immediate awareness of others. Social media also makes things feel less real to me. That feeling is personal and I don’t knock anyone else who feels differently; it’s just my personal preference. This space is different for me.

I know very little about most things, and surely the things I know a lot about are a total snooze fest. Today, I feel like sharing my experience might help me better understand my situation and it might help others. I welcome thoughtful dialogue and suggestions, but not pity. I am not a poor thing; I am a strong woman who tackled a problem with the help of my favorite human, Joe Hall, my loving family and friends, and an amazing, badass named Dr. Amy Broach. So, here it is . . .

A week ago, I had surgery; left oopherectomy, bilateral salpingectomy, endometrial ablation and a progesterone implant inserted for hormone regulation. I am healing. I am at peace with my decision. There are so many women who have shared their experiences with these diseases/disorders and there’s something I’ve noticed underscoring all of them, a lack of information and understanding.

Since 2015, so much has happened to/inside my body. The journey has made me painfully (literally) aware of the black hole that is the institutional understanding of female organ health. Fertility? They’ve got that bit carved out into its own lucrative bucket of “healthcare options,” but the fundamental understanding, the why, still seems elusive. I did not get an answer for why an otherwise healthy 30-something-year-old female would present with persistent complex-cell cyst growth and severe endometriosis. Hormone imbalance. Why? Nothing. I was offered a solution to help me get pregnant before I was offered treatment options to address the two disorders, because they don’t exist. Symptoms can be managed and the disease “kept at bay.” There is no cure other than removing the growths and the organs they grow on. Seems extreme.

I get that my body is designed to create life, that’s pretty radin the grand scheme of things, but something went wonky along the way and I believe there should be treatment that doesn’t involve cutting entire organs out of our bodies that will ultimately lead to other health issues down the road. Throughout my experience, the question always came back to pregnancy; “Do you want to have babies?” Even if I had tried some of the more advanced and expensive options, my environment was not conducive to growing another life. It’s important to note that I could use “we” here in place of “I.” It would be factual, but Joe is not the kind of man to ever imply that he should have any control whatsoever over decisions about my health unless I am unconscious and he has to make them for me. His endless support has been invaluable.

A year ago, I spent the night in the ER with an episode of ovarian torsion. It’s super painful and can present like appendicitis, at least it did for me. This incident helped Joe and I realize the need for immediacy in dealing with my condition. Endometriosis, by the way, can only be diagnosed by diagnostic laparoscopy or MRI, as I understand. The symptoms are well documented, however, so my doctor worked up my treatment options without a definitive diagnosis. We jumped into a treatment protocol, which involved forced menopause to keep the cysts on my ovary from growing and the endometriosis from spreading.

The Mayo Clinic defines Endometriosis as an “often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.”

Winner, winner. The endometriosis has grown around my large intestine (colon) all the way down to my rectum. I can’t help but wonder, how rare is this really? The solution? Another surgery. The plan? Wait and see. The progesterone should keep it from growing/spreading, but we’ll have to see how bad the symptoms end up being. It feels like the world is saying your disease is “just a side effect of being a woman.”

There are no answers. I found the following recommendation in a report published by NIH in 2017:

“Two topics summarize the new recommendations: (1) a need for our field to thoughtfully and actively determine what data are needed to quantify endometriosis disease burden and to facilitate discovery that takes into account phenotypic variation and (2) endometriosis must be addressed and consistent data must be collected for research and clinical needs across the life course, in adolescence, pregnancy, and throughout adulthood. Adolescents in particular are an underserved group with high morbidity and social impact, and yet this age is likely the critical window for disease etiologic discovery and intervention.”

My career involves a lot of boots-on-the-ground advocacy. As immersed in that world as I am, it’s often difficult for me to think about advocacy as it applies to my own circumstances. I’m good about advocating for myself in the moment, asking for exactly what I need. But I’m struggling to see the path for a movement on this issue, or I’m missing it. I’m frustrated by the lack of research being done, that the most basic questions remain unanswered. I’m saddened by the stories of my friends living in pain and the women unable to accommodate the growth of a fetus or bring a baby to term.

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