Embracing the Endo Warrior Within 💪

I was in my late 30s by the time I finally learned that the painful periods I experienced the entire time I’d had periods were not normal. The debilitating pain had grown worse and lasted longer as I got older, but I thought that powering through it was just part of life. The last few years I’d begun experiencing digestive issues too. I knew that something was wrong, but I was being discouraged and gaslit whenever I sought help from doctors.

Why is it so hard for me to advocate for my own health and get answers? Pretty sure it has something to do with having a uterus. And a lot more to do with the abysmal state of our healthcare system and the goddamn patriarchy.

I’m not sure when I first heard the word endometriosis. But once I did, something just clicked. And the more I learned about it, the more sure I became. One in ten people with uteruses (or people on estrogen) have endometriosis (aka endo). And it takes an average of ten years for these women to get an actual diagnosis. There’s no cure.

So yeah, this issue might be a little much for the squeamish, and perhaps a little TMI. Feel free to skip it, but please think twice before you do.

I’m about to get very real with you. Someone in your life is impacted by endo or similar chronic issues that often get dismissed, misdiagnosed or overlooked because they primarily impact women. And we aren’t getting the scientific research, healthcare support, education, inclusion, or proper treatment that we deserve. We need our allies, and the shortcomings of our medical system impact EVERYONE.

I always knew something was up with my hormones, and being on birth control in my 20s helped clear my acne and made my periods less painful and more regular. But I started noticing side effects from it and did some research, and eventually got off the pill. I had worsening cramps, bloating, and PMS symptoms that led me to hold a grudge against my cycle and everything that comes with it.

What gives? Is my uterus taking revenge on me for not making babies or something? Sure feels like I’m being punished for over a week of every month. I started taking some PMS supplements, learning about hormone imbalances and trying holistic remedies while I begged for answers each year at my gynecology exam. And I self-medicated with a certain plant medicine that has always relieved my pain better than any pill.

A few years ago I got a period in the middle of my cycle while traveling, and since it was usually so regular I was not prepared. I talked to my mom, who’s a retired RN. She agreed it was probably a little early for perimenopause, but she’d had similar symptoms in her menstruating days.

When I mentioned endometriosis and it seemed to match much of what I’d been experiencing, she told me the doctors had found endo when she had her hysterectomy in her late 30s. I knew they had found an ovarian cyst and she’d had the surgery, but I clearly should have talked to her about that experience sooner. I found out my aunt also had it, along with fibroids and cysts, so both my only living older female relatives did not go through menopause the usual way, leaving me no roadmap for it. Their generation really was not encouraged to talk about this stuff. Even though they were both nurses!

So I made a gyno appointment as soon as I got home, with a new doctor. She listened as I described my symptoms concerns that I had endo like my mom and aunt had. I knew that a laparoscopic surgery was required to get an actual diagnosis. But when I mentioned this I was immediately discouraged from surgery and the doctor seemed to downplay my concerns. She suggested an ultrasound when I asked about other tests or treatments.

When I looked up how much the ultrasound would be, Kaiser estimated about $450. I had recently lost a job so that was pretty steep, but I wanted answers, so I did it. The bill ended up being over $900, and it didn’t show anything (because often, endometriosis tissue doesn’t show up on ultrasounds). I had to apply for assistance to pay for a test that didn’t get me any closer to the answers I needed. But at least I didn’t have any visible ovarian cysts, I guess.

I tried a different gyno for my next appointment and after describing my symptoms, including digestive issues that were pretty constant, and he agreed that it did sound like I had endo. He said getting the surgery would require being referred to a specialist in San Francisco (about an hour away) but made that seem like a distant last resort, and suggested a steady-dose birth control to help control symptoms. I finally felt validated, and surprisingly after years of preferring a female gyno but being told my severe cramps were nothing to worry about, it was the first male doctor that I’d seen in years that finally listened.

But, turns out, most gynos have a very basic (and outdated) understanding of endo and despite it being so common, tend to just default to birth control for most of the issues women come to them about.

So for the past year I have been skipping most of my periods with birth control, but the ones I have every four months are still painful, just not particularly heavy, and not quite as bad as they used to be. The digestive issues persist, no matter what I eat. But I’m trying to cut down on inflammatory foods and slowly shifting my diet (I might have to give up gluten and dairy, guys, and I’m dreading it).

Thanks to Obamacare, my birth control is covered by my insurance, but who knows when that rug will be pulled just like abortion rights were. And I’ve noticed some other side effects like breakouts and high blood pressure from the pill. But, it’s definitely better to not have to deal with periods, and that is when endo flares up. It is not a cure, nor does it stop the disease, which impacts the entire body, not just the reproductive system.

Every time I ask about that referral to a specialist or mention the ongoing digestive issues to either my gyno or PCP, I am dismissed and deferred. I am not given a pathway to get the actual diagnosis that can tell me what stage of disease I have or whether I have endometrial tissue gluing my organs together (as can happen) or impeding my digestive tract. Pain isn’t a great indicator of how severe the disease is, especially when I’m taking meds to mask it.

The last year I’ve also been taking a deep dive into endometriosis, reading books and joining support groups, and absorbing as much as I can. Even though the real answers won’t come until I can see an endo excision specialist and a pelvic floor PT, I feel much better armed to advocate for myself and empowered to know what to ask for. And if this gyno stops listening as I push for answers, I guess I’ll try another, and another…

In the process I’ve compiled some great resources about endo in a Google Doc that’s constantly in progress (PLEASE SHARE THIS). And I’ve learned about so many related issues like PCOS, fibroids, PMDD and adenomyosis. The more I learn, the more I feel simultaneously empowered and outraged.

For instance, fun fact: the surgery most effective for endo, excision, is more involved and specialized than ablation, but insurance reimburses the same amount for both, so women are steered towards the cheaper and less effective ablation surgery instead of what will actually provide them lasting relief. And that’s if we’re even offered surgery at all. Many women are forced to pay for the care they need out of pocket just to be able to see the right specialist.

I can see why they call us Endo Warriors. I feel like I’ve been slowly arming myself for battle, but it would be great to actually have a map of the battlefield or an idea when I’ll get some relief from the fight. I’m fighting in a nebulous fog: lack of research funding, a clusterfuck of a healthcare system, a long history of misogyny in medicine, and the stupid stigma that tells us we shouldn’t talk about this stuff. That menstruation is gross and secretive, and we should just suffer in silence because that’s what it means to be a woman.

Well, fuck that noise. I’m getting informed, and I’m getting LOUD. I’m demanding the answers that keep getting delayed and hidden from me. I’m bringing up women’s health issues as often as I can. And hopefully I’ll eventually get the treatment I need to help make endo my bitch instead of the other way around. (Pardon the swearing, but as you may know by now, this is how I talk when I’m fired up).

If you made it this far, thank you for reading, and I’ll keep you updated from the battlefield. I’ve listed a few ways you can support below. And please share what I’ve learned and compiled with anyone in your life who has painful periods or who knows someone with endo. I hope it can save someone else some steps on this journey.

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