I'm a Latina With Endometriosis
I'm a Latina With Endometriosis, and Here's Why My Story Matters
It's been exactly two weeks since I've felt any pelvic pain. Two weeks without having to press a heating pad to my torso has felt like an absolute gift, all thanks to the weekly acupuncture sessions, Chinese herbal medicine, and numerous self-care and lifestyle modalities I was forced to put into place. Before that, I was experiencing some degree of mild to chronic lower-abdominal pain more days than not since February. My gastroenterologist recently reassured me after numerous tests and a colonoscopy that these are just my usual IBS constipation issues flaring back up. But a part of me has wondered: what if this is actually something else? I've had so many different pelvic pain-related issues since the beginning of my adulthood; what if they've all been interconnected in some way? What if what I think is IBS is actually my endometriosis?
I recently attended the world premiere of the documentary "Below the Belt" in NYC. When I was initially invited, I felt an immediate desire to attend, but not for myself: to get the word out and help women who have had much worse endo issues than myself. I was diagnosed with endometriosis in 2013 after having my appendix removed. After waking up from my surgery, I was told that microscopic amounts of endometriosis were found in my pelvic region but was told by surgeons that they didn't remove it because it was such a small amount. I was reassured I had absolutely nothing to worry about: that if I got on birth-control pills immediately, it would never grow. It's been almost 10 years since that day, and while I have consistently stayed on birth control, my pelvic and GI issues have never really gone away. If anything, they've become more consistent this year than ever. It never dawned on me that any of my current health issues could be at all related to my endo until I saw "Below the Belt."
Endometriosis affects one in 10 women, as well as trans and nonbinary individuals with uteruses. And yet many folks aren't even familiar with what it is. Many doctors — including ob-gyn doctors — aren't well versed in it. Endometriosis is defined as a typically painful disorder in which tissue that normally lines the inside of your uterus (the endometrium) grows outside of the uterus. Its most common symptoms are pelvic pain — which can be extreme during one's menstrual cycle — and for some, it can even cause infertility difficulties. Despite how common the disease is, most women don't receive a diagnosis until 10 years in. And if you're a woman of color, you are even more unlikely to receive a proper diagnosis due to racial inequity and lack of access.
"It's been a condition that people just haven't talked about historically. This lack of public discourse had in part led to endometriosis being virtually ignored by most medical practitioners for decades."
Shannon Cohn, director and producer of "Below the Belt," explains that the reason why so many women don't receive a proper diagnosis for years or even at all is due mainly to menstrual taboos and societal stigma about below-the-belt women's health issues. "It's been a condition that people just haven't talked about historically. This lack of public discourse had in part led to endometriosis being virtually ignored by most medical practitioners for decades," she tells POPSUGAR. "Because of this, most aren't familiar with the true symptomatic profile of endometriosis. Endometriosis symptoms vary widely from person to person. One person may have extremely painful menstrual cramps while another may have no pain but may experience nausea, bloating, or other IBS-type symptoms. One may have all of these symptoms. Yet another person may not have any symptoms until she has trouble getting pregnant. If the healthcare provider doesn't know how to recognize endometriosis, how can people with endo possibly get the information and treatment that's best for them?"
The film, which Cohn created to bring mainstream attention to endometriosis, follows four women's endometriosis stories: Laura Cone, Jenneh Rishe, Emily Hatch Manwaring, and Kyung Jeon-Miranda. Out of all of the women's storylines, Jeon-Miranda's is the one that resonated and impacted me the most. Not only is she a woman of color (Korean American, to be exact), but despite being a successful visual artist, designer at Somos Arte, and director of La Borinqueña Grants program, Jeon-Miranda didn't have the wealth to grant her access to get the support and the treatments she needed. It's a story women of color with endometriosis know all too well. Lack of access and equity could literally cost women of color their quality of life and even their jobs. For many of us, getting access even just to get a proper diagnosis is a far reach.
Jeon-Miranda was 22 years old when she first experienced symptoms of endometriosis. She was finally able to get deep excision surgery 16 years after her initial diagnosis, but it came with a price that included $800 consultation visits with doctors and a $10,000 surgery (which was significantly less than what other doctors were charging). Jeon-Miranda, who had experienced everything from severe pains to a miscarriage and infertility issues because of having endo, had created a body of artwork over the years that shared the story of her endometriosis. She later created a blog about her journey that Cohn found. Eventually, Cohn reached out to Jeon-Miranda to be a part of her documentary film.
"Art is a powerful medium. It transcends age, class, race, gender, and regions. I realized this as a painter, and I hope that 'Below the Belt' does this as a film. The most powerful result that can come from this film is discourse," she tells us. "We all need to talk about endometriosis. Women suffering from it, women who are not, and men as well. This conversation can lead to policy, legislation, and challenges in the medical industry. Health insurances need to provide coverage for this disease. Washington needs to pass legislation to expand public research into finding a cure and providing safe, reliable, and affordable treatment."
While endometriosis is an under-researched and widely misunderstood disease that affects women across the globe, our experiences with endo are by no means the same. If you are a woman of color who doesn't have access or equity to get the help and treatment you need — even just the initial diagnosis — having endo can feel like a nightmare you'll never be able to get out of. Black and brown women need space to talk about this hard reality.
"While there is no evidence that endometriosis is more commonly found in one race than another, it's not to say that it affects people of all races the same. Instead, how it affects people of color is more likely the result of the social pathology of racial bias in medicine," actress Rosario Dawson, who worked as the executive producer of "Below the Belt," tells POPSUGAR. "Research shows that women of color with endometriosis are less likely to be believed, diagnosed quickly, and treated effectively. Research has also shown that women of color who present with pelvic pain at emergency rooms are more likely to be treated for pelvic inflammatory disease, an ascending infection most often caused by the sexually transmitted diseases chlamydia and gonorrhea, rather than endometriosis."
"Women of color historically have been the victims of mistreatment and exploitation when it comes to their health and medical care."
Dawson, who herself suffers from endometriosis, hopes that this film and her own testimony can help bring awareness to the disease and help folks get the support they need for treatment. "Women of color historically have been the victims of mistreatment and exploitation when it comes to their health and medical care. As a woman of Puerto Rican and Cuban heritage, I learned that over 100,000 women between 1947 and 1948 in Puerto Rico were sterilized, only to then in the 1950s be the first large-scale trial population for the birth control pill," she adds. "This film, I hope, will spread awareness, inspire legislation, and dedicate resources towards treatment and cures, especially in underserved communities of women of color."
After watching the film and hearing the panel discussion, I found myself having to push back tears. An hour later I sobbed over dinner with friends who attended the premiere with me. While I recognize the privilege of having a diagnosis and having the kind of access that allows me to be in rooms where endo is being discussed on such a large scale, I was completely taken aback in terms of how I should even proceed with this health recovery journey. In order for all the IBS-like symptoms I've been experiencing to be caused by my endometriosis, it would likely mean that they are no longer just microscopic amounts. To know this for sure, I would need to get laparoscopic surgery, which is the only definitive way to see if it has grown. But the cost, even for someone who is insured, could be high. The number of doctors who are actually able or willing to perform this is low. And even if I was able to get this deep-excision surgery, which is the only effective surgery, most insurances don't cover it. So where would I even begin to afford that? A surgery that cost $10K and up would cost me my savings. It could mean having to use credit cards and potentially put myself in debt for something that doesn't necessarily promise a pain-free life or a lack of fertility problems in the future. There are also fewer studies on endometriosis among Black and Latina women to begin with.
I started to think about all the health issues and diagnoses I've been receiving throughout the course of my entire adulthood. When I was around 19 or 20, I started experiencing severe abdominal pain and discomfort that often resulted in me being in the hospital. I spent most of my college years and early 20s in the ER for unexplainable pains that often felt like spasms, just to be told it was either gastritis or IBS. In 2013, I suffered from appendicitis, which for an entire week was confused with pelvic inflammation disease. I was told I had microscopic amounts of endometriosis not worth removing. And almost immediately after the procedure, developed symptoms of what felt like a urinary tract infection but was actually interstitial cystitis — a painful pelvic disorder that was supposedly developed as a result of temporary trauma and nerve damage followed by the surgery — that fortunately lasted about a year and a half. I say fortunately because for many women, the symptoms never go away. In 2015, I was diagnosed with IBS. I thought I had it managed with the exception of a few days and sometimes weeks out of the year when I'd get episodes of pelvic spasms and chronic constipation. This past March, I went on a third date with a guy and wound up on the bathroom floor of his apartment for hours, hovered over a toilet with excruciating pelvic pain and nausea that seemed to come out of nowhere. I went to the ER the following morning only to be told that my ovarian cyst likely hemorrhaged and that over-the-counter pain killers would treat any lingering pain I was still suffering from.
Generally speaking, women's pain is never taken seriously, and that's two-fold if you're a woman of color, whose pain is considered to be something we're less sensitive to.
"Below the Belt" has made me consider if my endo is the true culprit behind all the painful pelvic conditions I've experienced over the years. It's made me want to raise awareness around this more than ever. Generally speaking, women's pain is never taken seriously, and that's two-fold if you're a woman of color, whose pain is considered to be something we're less sensitive to. As a result, our pain is often ignored or undertreated.
Regardless, we need each other in this mission to beat endometriosis, and it all starts with raising awareness about it in a country that refuses to even acknowledge its existence.