‘Endometriosis—and the Stigma Attached to It—Destroyed My Organs, My Friendships, and My Joy’

Endometriosis is a debilitating chronic health condition affecting an estimated 10 percent of women, and yet there are few effective treatments and no cures. As a result, many suffer in silence, and “endo” remains one of the most under-recognized health conditions of our time. It deserves a lot more attention, and since March is National Endometriosis Awareness Month, we’re handing the mic to Kelsey Lindell, a disability advocate who has struggled with endometriosis for nearly two decades. This is her story. 

A decade to diagnosis

When I got my first period at 12 years old, it lasted for six weeks straight. By high school, the intense pain associated with my menstrual cycle was landing me in and out of the hospital. At that time, doctors believed I just had issues with ovarian cysts and offered no relief.

One day in my mid-20s, I collapsed in the middle of my usual 5:30 a.m. cycling class due to severe abdominal pain. Doctors ran a series of tests but couldn’t find anything “wrong” with me, so they once again attributed the pain to a ruptured cyst and sent me home.

Over the next six months, I was in the hospital every month with test after test coming back inconclusive. Finally, a nurse pulled me aside and said she believed I might have endometriosis. As I read the brochure she’d handed me, I felt like I’d been punched in the gut. I realized there was no cure, and that I was going to be in pain forever.

Trying to heal “naturally”

The only way to definitively diagnose endometriosis is through surgery, but due to extensive medical trauma, I was reluctant to undergo the procedure. I’m missing half my left arm, so I had 11 surgeries before I was 6 years old. Facing another surgery versus the debilitating pain was a true Sophie’s choice scenario, with me losing on both ends.

Instead, I did some internet research and came across a few women who swore by anti-inflammatory diets to treat their endometriosis.I decided to go all out, cutting gluten, dairy, alcohol, and processed sugar out of my diet, and my symptoms did get marginally better. The pain went from about an eight or nine out of 10 to a five or six, which is still pretty intense considering anything past a six will land you in the ER, but it was more manageable nonetheless.

Adhering to such a strict diet, however, cut into my social life and dampened my joy. In practicing this anti-inflammatory diet and wanting even greater results to avoid surgery and pain, my obsession with avoiding certain foods became orthorexia, a form of disordered eating.

When COVID-19 hit, I couldn’t go to the hospital anymore when I had a bad pain flare. My stress levels skyrocketed as did the pain, and trying to stick to the anti-inflammatory diet was exacerbating that stress, so I loosened up on it a bit—and the excruciating nine out of 10 pain returned.

Hope and despair

I began treating the pain at home with cannabis, which really helped since I couldn’t go to the hospital and the waitlists for endometriosis specialists were really long.

Eventually, I was also able to find a great endometriosis specialist who practices both functional and traditional medicine. She told me that I was going to have to do the surgery at some point, but that we could hold off until I was ready. In the meantime, we tried “everything,” including various hormones and other drugs. Those treatments kept things at bay for a while.

But by the summer of 2022, my condition was so bad that I had to stop doing the work I loved as a fitness teacher because there was usually about a 50/50 chance I’d be in too much pain to lead class. I closed my fitness business, and spent the summer in bed.

Occasionally, the pain would clear up, giving me a false sense of hope. During one of these pain-free periods, my husband and I decided to take a trip to Italy. But halfway through our vacation, it got so bad that I was projectile vomiting blood and I was rushed to the Florence ER in the middle of the night. I decided it was finally time to do the surgery.

I underwent an emergency procedure. In images taken during surgery, it looked like all of my organs were covered in black tar—the endometriosis was everywhere. Still, the surgeon assured me my prognosis was optimistic.

Within a month it had all grown back.

At that point, I was not in good shape mentally, physically, or emotionally. Imagine having the worst pain of your life and just never being able to get rid of it. It’s always there, and if it’s not there, it’s about to be there again. You cannot eat, sleep, think, work, or play without it being a constant reminder that this disease—not you—controls every aspect of your life. It’s exhausting, and so discouraging.

Imagine having the worst pain of your life and just never being able to get rid of it.

I’d had prior suicide attempts and hospitalizations, and I became worried about myself, especially since this time around, I couldn’t utilize any of my coping mechanisms—like cooking, taking walks, or exercise. Not only had this disease taken every enjoyable activity from me, it also took coping skills away—because I was in too much pain to do them. I was in too much pain to want to live. I still feel like this sometimes. 

My husband was afraid to go to work because he didn’t want to leave me alone. Not wanting him to shoulder the burden on his own, I reached out to my closest friends to let them know I needed support. Most of my immediate chosen family responded with support and a promise to set up some form of organized check in routine to support both my husband and me.

My best friend of over a decade, however, didn’t respond until 48 hours after my text with “Can’t we have a mature, adult conversation about this?” and went on to imply the reaction to my very real pain—and dwindling mental health—was immature and in my head. Our relationship has never been the same, and it’s the hardest breakup I’ve endured. Losing my best friend and platonic life partner was the last thing I saw coming, and it’s one of the reasons I’m so passionate about talking about this: I want people to know this is a real disease that can destroy your life, and there’s no cure for it.

I want people who know others going through this to be able to respond with kindness, empathy, and understanding. I want people to believe women and their chronic pain.

Exhausting all my options

While I’m doing somewhat better with respect to my mental health, I don’t exactly have a happy ending to share. I’m currently on my fourth type of progesterone—one form of treatment for endometriosis—in the last nine months. This one seems to be helping so far. I’m also on low-dose Naltrexone, a drug that opioid addicts use that dulls your nervous system and has also been used to alter pain receptors for people with chronic pain (although this is still an experimental therapy for endometriosis). This medication could help with intense menstrual cramps or even when you have cramps but no period. I’m about two months in, and they say I’ll be able to tell within three months if it’s going to work.

Some people, such as Lena Dunham, choose to treat severe endometriosis by having a hysterectomy, a procedure in which your uterus is removed and sometimes, your cervix and ovaries as well. A friend offered to carry children for me so that I could pursue this, but my doctor says a hysterectomy won’t help me unless she removes my ovaries too. This, she says, would cause a lot of other health conditions, so she doesn’t want to do it until she’s exhausted every treatment on the market.

And it feels like we’re doing just that. We’ve done surgeries. We’ve done spinal injections. We’ve done every pain med there is. We’ve done acupuncture, abdominal massage, pelvic floor physical therapy, and herbal supplements. And the four types of progesterone. Now Naltrexone. That’s kind of where we’re at. We’re combining Eastern and Western medicine—just throwing everything we can at this to get some quality of life back.

Awareness matters, but representation matters more. Here’s why

While I’m eager for better treatments and, of course, a cure, I think there’s a lot of work to be done in the interim to raise awareness around endometriosis in order to reduce harm to those struggling with it and other chronic illnesses. I mean, there’s a reason people with chronic health issues are up to nine times more likely to die by suicide than those without—it’s because of dismissive attitudes like the one I encountered from my former best friend.

People with chronic health issues are up to nine times more likely to die by suicide.

There’s so much stigma and systemic ableism facing women with chronic illnesses, and a lot of medical sexism and racism hindering diagnoses, treatments, and cures. I’ve been dealing with this issue since I was 12 years old, and I didn’t get diagnosed until I was 26. That lag is part of the reason I have permanent damage to my organs. And this has been my experience navigating this issue as a white woman. I know that Black women are even more likely to not be believed, and their pain is more likely to be dismissed.

My whole business is geared towards changing this. I own a company called Misfit Media, and we provide education around ableism for companies that create marketing or entertainment content, because I always say, “Those who create content create culture.” What we consume informs so much of our public perception of things, and I believe that if we can change content, we can change the culture surrounding disability. Better, more ubiquitous representation is one of the best tools we have to change the lives of people who are dealing with chronic illnesses, like endometriosis, every single day.

Often, when people think about disability inclusion, they think, “Oh, let’s throw somebody with a wheelchair in the advertisement or movie or whatever.” They’re not really thinking about how to organically embed narratives about people with chronic illness into content, even though it’s a really common experience that deserves representation. We need a lot more content—whether it’s marketing, advertising, or entertainment—that brings this very unfortunate, but very normal, part of life to light in order to raise awareness and engender empathy.

After all, it’s hard enough to deal with chronic illness and pain without also having to deal with being gaslit and having your loved ones walk away. I want women with endometriosis, and those with chronic illness in general, to feel like they can seek the support they need without being shamed. I don’t want more people to lose loved ones who think they’re sensationalizing their pain. I don’t want more people to have to go through two decades of doctors shrugging their pain off.

This is just such a bitch of a disease, and it’s time for culture to stop pretending it doesn’t exist. We are here, we are suffering, and we are done doing so in silence.