For Those Struggling With Endometriosis, the Pain Goes Beyond the Physical

We need to reconsider the way we frame motherhood and gender roles so those who choose not to or who cannot become pregnant can live without shame or stigma.

[Photo: A sad woman rests in a bed in a hospital.]
According to the Centers for Disease Control and Prevention, just over 12 percent of women experience some issues with infertility, and between 2011 and 2015 more than seven million women used infertility services. Shutterstock

For years, I’d had mystery pain and unruly periods. But when I started law school at 22, my cramps started coming a full two weeks before my period—they bore through every over-the-counter medication I tried. I was lightheaded constantly.

So, when a doctor first mentioned the possibility that I might have endometriosis, without explaining what that was or what it meant, it was almost a comfort. I finally had a name and a reason behind my symptoms.

But after a quick Google search, that relief gave way to anxiety and fear. Endometriosis is a chronic reproductive health disease that occurs when tissue similar to but not the same as the endometrial lining of the uterus grows where it shouldn’t. Scanning the WebMD page after my appointment, my eyes stopped on one symptom in particular: infertility.

That night, my mom and I were talking about my new potential diagnosis when I broke down in tears.

“The infertility—that’s what scares me,” I said through sobs.

I have always said that marriage is an if for me, but having children is a when; I have always known that no matter what, I would want them. But suddenly, this plan I had for the distant future was right in front of my face. A pit formed in my stomach whenever I entertained the possibility of compromising something I’d always assumed to be a given. It was a set of emotions and anxieties that were completely unfamiliar to me, but that I would later come to realize were much more common than I thought—and that as an endometriosis patient, I was far from alone in having them.

That same year, a doctor recommended I consider removing my ovaries to “treat” my endometriosis. I was in daily, agonizing pain. An ablation surgery and subsequent hormone treatments, which had been promised to provide relief, not only had failed to do so, but only made things worse. My doctor suggested we first wait to see if the current treatment I was on—an incredibly high five milligrams of synthetic progesterone a day—would work. But if it didn’t it, my options were removing my ovaries or Lupron: a drug so strong it is given to sex offenders, sometimes as part of a court order to lower their sex drive.

I was desperate. I remember leaving the hospital that day and telling my mom that I didn’t want to try Lupron; that if the current hormone treatment didn’t work, I wanted to remove my ovaries.

Not long afterward—and by what felt like some divine intervention—I came across a Facebook group run by Nancy Petersen, a nurse who has dedicated her life to providing and fighting for better care for endometriosis patients. There I learned that endometriosis may not be treated or cured with hormones, removing the ovaries, or as so many women are led to believe, through a hysterectomy. While such strategies, like the ones my doctors tried, can sometimes treat endometriosis symptomatically, the disease produces its own estrogen—it can continue to grow in a body without a uterus or where hormones are being chemically suppressed.

On the group, I read about excision surgery, the gold standard in endometriosis care: where the disease is excised or cut out. I learned how patients were finding long-term, even indefinite, relief, many going on to have successful pregnancies, after undergoing the procedure with one of the handful of skilled surgeons in the country that can perform it correctly.

So, I tracked one down and underwent a successful, nearly five-hour excision surgery. My doctor confirmed that the hormones I had been taking to treat my disease were doing nothing of the sort: Lesions continued to grow even in the presence of hormone suppressants, and my reproductive organs had started to fuse as a result. But I was incredibly lucky. He was able to remove all the disease and scar tissue without damage to or loss of my organs, and I’ve been assured my future fertility outcomes will likely not suffer as a result.

But as my physical health recovered, my mental health lagged, and I found myself being triggered by seemingly innocuous remarks about pregnancy, fertility, and reproductive health. A family loudly huddled around a sonogram photo in my OB-GYN’s office sent me into a rage; a humorous comment by a friend about cutting her uterus out when she had bad period cramps made me want to unfollow her on Instagram entirely. I realized that all those nights I stayed up worrying how I would pay for in-vitro fertilization or freezing my eggs, all that anxiety and sadness I felt worrying about never giving my parents grandchildren—it had all taken a toll.

Of course, infertility does not mean that parenthood isn’t possible—I knew adoption was always an option, and have, in fact, always hoped to become a foster parent or adopt when the time was right. But adoption is not the right choice for everyone. And for individuals struggling to get pregnant, or facing the possibility of infertility, that option often does not mitigate the pain or anxieties they live with.

“I Cry a Lot in Public”

According to the Centers for Disease Control and Prevention, just over 12 percent of women experience some issues with infertility, and between 2011 and 2015 more than seven million women used infertility services. Endometriosis patients struggle with infertility for a number of reasons: Many have had a hysterectomy, or have had their reproductive organs removed after being told by a doctor it would help their pain. Others have had so many failed surgeries with doctors not properly equipped to treat the disease that their reproductive organs are too compromised to successfully get pregnant without IVF, or at all. And many have adenomyosis—a similar but distinct illness where disease is present in the lining of the uterus—for which a hysterectomy is the only curative treatment.

It’s well documented that reproductive health for people with uteruses, and female pain in general, is incredibly stigmatized, mistreated, and underdiagnosed, even within the medical community. People struggling with infertility live at the crossroads of social stigma that disallows honest and open conversations about reproductive health, while at the same time being informed at every turn—whether it be via peers on Facebook, pop culture figures, or just traditional social mores—that the most important thing they can become is a mother. And so many often suffer in silence, feeling as though they are insufficient while at the same time wrestling with the grief of wanting to become pregnant and being unable to do so.

“Whichever way you turn, it seems reproductive health for people who menstruate … is a crapshoot,” Sarah Gay-O’Neill, an illustrator and multimedia artist who recently lost an ovary to endometriosis, told me in an interview. She, along with a number of endometriosis patients, talked with Rewire.News about their experiences with infertility, and the related emotional toll and stigma.

“Despite living in the 21st century, reproductive health for menstruating bodies still feels like the taboo of witchcraft in the 17th century,” she said. “You just simply do not talk about it. It’s a mystery; it’s ‘unclean.'”

Endometriosis does not necessarily mean infertility: Many endometriosis patients can, and do, have successful pregnancies. But accessing proper treatment is crucial to preserving fertility, and for endometriosis patients, that is often an uphill battle. They first have to find a doctor who understands and believes their pain—a process that leaves patients waiting an average of ten years for a diagnosis. After that, they have to wade through an avalanche of misinformation, often perpetuated by doctors using outdated methods to treat the disease, which can do more harm than good.

Rachel Davis, a Massachusetts-based social worker by training, underwent a hysterectomy after being told it would alleviate her endometriosis pain. But the procedure did not provide the relief she was led to believe it would, and she has since required a subsequent excision surgery to properly treat the disease.

“Ever since I was 5 years old, I always wanted to be a mom,” she told Rewire.News. “I used to take basketballs and soccer balls and put them under my shirt pretending I was pregnant.”

“I feel like my life’s purpose has been taken from me,” continued Davis. “As my friends begin to get married and start families, I am grieving.”

Brenna Power, a stay-at-home mom with adenomyosis and endometriosis who has one daughter from a successful round of IVF, said the whole process was “pretty traumatic.”

“I started questioning what I wanted to do with my life if I never had children,” she said. “Would it be enough … my father passed away right before we started treatment and I found myself wondering what would happen if I never had kids. I felt like my life would have been invisible. I felt invisible.”

Stacy Bauer, a paralegal with endometriosis and adenomyosis, has not had a successful pregnancy; she cannot afford IVF. She was pregnant once, but a few weeks after finding out, she was told she was experiencing a “tubal pregnancy,” where the fetus grows not in the uterus, but in the fallopian tubes. As a result, she had to terminate the pregnancy.

“I went into a deep depression,” she said, about the aftermath of losing her pregnancy. “I couldn’t eat, sleep, talk to anyone, I contemplated suicide.”

Infertility patients say that the pressure to have biological children isn’t just internalized—everyday people can trigger anxiety and grieving too with seemingly innocuous questions.

Davis, for example, explains that because of ongoing comorbid pelvic pain generators she experiences what’s called “endo belly”—significant bloat that causes her to sometimes look “five months pregnant.” She says as a result, people often ask her if she’s expecting. “That question really stings.”

Elizabeth, a designer who requested that Rewire.News use a pseudonym for her, has struggled with endometriosis since she was 14. She believes her endometriosis is too advanced to have success with IVF, which she says would also not be financially viable for her. She says the process of trying to become pregnant, and being told by doctors it is unlikely she would have a successful pregnancy, has been exhausting and depressing, and triggers are everywhere. She said that mothers often ask whether she’s considered IVF, or surrogacy, “as though I could somehow make it to this point without being aware there are other ways to make a family.”

“Many take it upon themselves to convince me that giving up is the worst possible choice I could make, and that having a baby should be pursued at all costs, regardless of the risks, because I will regret it. Others try to empathize, by comparing the pain of endometriosis to the pain of child care: a sort of pain Olympics if you will,” she continued.

She says everyone—from cab drivers, to family members at weddings—pose probing questions about her “ticking [biological] clock.”

“It happens in grocery store lines, on public transit, sitting on a park bench,” she said. “I cry in public a lot, as a result.”

Nicole Price, a hairdresser who has been diagnosed with both adenomyosis and endometriosis, has undergone fertility testing and considered a hysterectomy to treat the former. She talked to Rewire.News about related discord between her and her family.

“The worst part is that my extended family pretty much does not see me as an adult because I am unmarried with no children,” she said. “They leave me out of certain conversations … and have made comments in the past stating that I don’t need to be a part of things or shouldn’t have an opinion over what matters because I’m just me.”

She also says social media compounds the sadness she feels about her struggle with infertility.

“The other part for me that is the hardest is birth announcements on social media. I started unfollowing people,” she said. “While I’m happy for them, sometimes it’s just too hard to watch.”

Dr. Michael D. Fox, a fertility specialist says infertility takes a significant emotional toll on couples as well.

“Women and couples feel somehow defective, or less of a woman or man when their roles as parents are not fulfilled in a timely or normal fashion. People turn inward and become less social. They are devastated by family and friends who are becoming pregnant … as family and friends they desperately want to be supportive, yet they are torn apart by the way society puts reproduction in your face at every turn.”

He says these couples “desperately” need allies—friends and loved ones with whom they can talk to and confide in. Others, he says, need to consider the way they talk about these issues—that they should never joke to couples struggling with infertility about how children drive them crazy or jokingly offer up one of their own children. He says he hears from his patients all the time that these kinds of comments are all too common, and incredibly devastating.

Jordan Davidson, the editorial director of News and Lifestyle at the Mighty—a website that covers issues related to disability, disease, and mental health—says that the way fertility and pregnancy are talked about on social media can be triggering for those struggling with it, and suggests people be cognizant of that before they post.

“If you care about the well-being of your friend, and you know that your friend is going through a difficult time, instead of having them do the legwork of having to screen their social media experience, try and do that for them,” she said. “And try and do that for them in real life too.”

Whether it’s sharing ultrasound photos on Facebook, or inviting friends to a baby shower, Davidson says to acknowledge what your friend is going through—tell them you understand if they can’t come to the baby shower, so they know they’re supported and understood. She suggests considering blocking your friend who you know is struggling with infertility from seeing those social media posts and says it’s also important to consider how we talk about pregnancy and parenting in front of people struggling with it. Think about how saying things like, “Pregnancy is the most meaningful thing you can do” or “There’s nothing like being pregnant,” might feel to someone reading it who knows that can never happen for them, she advises.

“It’s difficult for a lot of people going through infertility to have their pain feel valid, so be proactive,” she said.

What About Those Who Don’t Want to Become Parents?

Meanwhile, it’s also important to remember that endometriosis patients often aren’t given a choice of whether to think about their fertility. Even patients who don’t want to become parents experience constant societal and medical pressure to define themselves by their reproductive choices, and to constantly consider and prioritize those outcomes, whether they want to become a parent or not.

Of endometriosis patients specifically, Davidson said, “There’s no way to treat endometriosis without thinking about your reproductive future.”

Abby Norman, founder of Ask Me About My Uterus, and author of the new book by the same name, says she experienced this firsthand. She says even early on, before fertility was even on her radar, it became part of the conversations about her treatment.

“At 19, it was really hard to be having these conversations, when I had no idea what kind of life I wanted and whether or not that included children,” she told Rewire.News.

Norman, who lives with endometriosis and a number of related illnesses, said fertility has never been her top priority: “What was important to me, and still is, has not necessarily been in the realm of fertility.”

She said when she underwent her first surgery, a massive endometrium was found on her left fallopian tube that had displaced her ovary. Instead of removing it, though, her surgeon, who she suspects did not have the skill to properly treat the disease, wrapped it in surgical mesh.

“I was really upset when she hadn’t taken it out,” Norman said. “She said, ‘Well it could have impacted your fertility.'”

She says when she asked if the surgery would alleviate her pain, her doctor was unsure; it did not do so. In fact, the illness and pain have impacted much of Norman’s life. She has gastrointestinal issues that have greatly impacted her diet; she has had to give up dance, which she went to school for. She says all of her sexual experiences have been colored by her illness, and the isolation, sheer debt, and depression of living with chronic illness weigh heavy. She remembers becoming frustrated when she had a serious boyfriend with whom she couldn’t have penetrative sex.

“I just kept asking doctors, ‘Why do you keep asking about this? Why does fertility have to be my biggest concern when I can’t even have sex in a way that would get me pregnant?”

She says her overall quality of life suffered at the expense of her fertility, and she feels she never really had a say in that.

“It’s been that way since the beginning,” she said.

We live in a dichotomy: a society in which the pain and grief of infertility patients is stigmatized, largely because it exists under the umbrella of reproductive health and female pain, an issue already fraught with mistreatment and shame. At the same time, the roles of parenthood and pregnancy are elevated to the highest visibility and importance. On an interpersonal level, this manifests as a simple question about when a newly married couple plans to have children. On a more nuanced level, though: The way society still designates motherhood as a necessary role for someone assigned female at birth creates a culture where pregnancy is a given. This leaves those who struggle with infertility feeling like an outlier, even a failure.

And so, while an immense amount of pressure is put on people who can become pregnant to do so, at the same time, their suffering when they want to and cannot is diminished. By failing to recognize the pervasiveness and the pain of these experiences, we overlook the ways in which everyday conversations or social norms are triggering.

It’s important to remember, then, that everything from asking a friend or co-worker when they’re going to start a family, to making a casual joke about not wanting a uterus because your period cramps are hard, can cause someone pain. One in eight couples experience infertility, and the conversations we have about parenting and pregnancy must include their needs and their experiences. At the same time, we need to reconsider the way we frame motherhood and gender roles so those who choose not to or who cannot become pregnant can live without shame or stigma.