When Emma Williams-Tully was 10 years old, she woke up in the middle of the night in a pool of blood. After rushing into her parents’ bedroom, her mother explained that she’d started her period. But as someone with endometriosis—a condition impacting around 10 percent of reproductive-age people with uteruses—it was actually so much more than that.
Endometriosis is a condition where tissue similar to the uterine lining is found growing elsewhere in the body. When that tissue is stimulated during the menstrual cycle, it can thicken and bleed, much like normal endometrial tissue. But because it has nowhere to exit, it can cause irritation and scarring, leading to a myriad symptoms, including immense pain, menstrual irregularities (including heavy or prolonged bleeding), fatigue, mental health repercussions, gastrointestinal issues, urinary problems, difficulty having sex, and more.
“I’d have 14-day periods where I’d be in the most debilitating pain,” says now 39-year-old Emma. “I’d have to wear two sanitary pads and still soak through them onto my school uniform.” Despite these extreme symptoms, which only worsened over time, Emma spent years dealing with doctors who were seemingly clueless about her condition, glossing over it as a “bad period” and telling her she was “overthinking things,” reluctant to properly investigate what was wrong.
Emma is far from alone in being gaslit and overlooked: On average, it takes people 10 years and visits to at least four or five doctors—to receive an accurate endometriosis diagnosis in the U.S. This, despite the condition first being discovered more than 120 years ago, and the fact that we now know that endometriosis impacts every part of the body, including (in rare cases) the lungs, brain, and eyes. And it can lead to life-threatening complications if left untreated.
Instead of referring her to a specialist who could have recognized the signs and created an early intervention plan to stop her endometriosis from worsening, Emma’s doctor put her on the contraceptive pill at the age of 13 as a way of masking the symptoms.
“[Even while on the pill] I’d still be on the bathroom floor rocking back and forth like a mad woman,” says Emma. “It was only when I was 16 that my doctor finally referred me to a gynecologist, but when they did an ultrasound, everything looked ‘hunky-dory,’ in their words.” That’s because endometriosis can often only be definitively diagnosed via a laparoscopy (a type of surgery that uses a thin, lighted tube with a camera to examine organs within the abdomen).
Emma only heard the word “endometriosis” 10 years after that first “bad period,” when her medical team finally diagnosed her. They decided to induce her into a chemical menopause, which suppresses the menstrual cycle in order to quell symptoms.
Inducing temporary menopause is not an uncommon option offered to endometriosis sufferers, but while it can help relieve pain in the short term, it’s far from a permanent solution. And for Emma, menopause symptoms presented a whole new set of struggles to contend with. “The depression was instant. Mood swings, dripping with sweat—I was a completely different person overnight. But the pain did improve,” she remembers.
Faye Farthing, head of communications at Endometriosis UK, agrees more needs to be done. “Comments such as ‘It’s all in your head’ or ‘It’s just part of being a woman’ are still heard by patients all too often—and it’s time that changed.”
Faye adds that the ever-growing wait time for a diagnosis is “shocking,” especially considering how much more awareness there is about the existence of endometriosis. “Waiting means a delay in accessing treatment, during which time the disease may progress, leading to worsening physical symptoms and a risk of permanent organ damage,” she adds.
Surgery—to remove layers of endometriosis, scar tissue, and cysts—is generally deemed to be the only effective treatment (though still not a cure). However, there’s a real shortage of specialists: The Endometriosis Foundation of America estimates that there are only about 100 endometriosis specialists trained in advanced laparoscopic surgery, meaning waiting even longer for treatment after waiting for the initial diagnosis.
“Months [after being induced into chemical menopause], I had another surgery, and [the surgeon] found stage 4 endometriosis everywhere. It was rampant, all over my bladder, bowel, uterus, and ovaries. It was all over my back and in my hip,” Emma shares. “At the age of 31, I had a radical hysterectomy [after having my daughter]. But it took three surgeries to perform because my uterus and bowel were so stuck together.”
In total, Emma has had 11 operations. One resulted in her needing an ileostomy bag. Another involved relocating her bladder. Now, Emma is unable to work and sometimes needs a crutch to walk due to the immense fatigue that her endometriosis causes.
“A lot of people have this misconception that it’s just something that remains within the uterus, and that if you have some [Tylenol] and ice cream you’re going to be absolutely grand,” Emma reflects. “But I wouldn’t wish it on my worst enemy. It’s a mind-numbing pain, whether you’re stage one or four, and it’s soul-destroying. It’s impacted so many areas of my life. Endometriosis is a poison that doesn’t care where it goes.”
Charity worker Hadia Aslam, 28, experienced medical gaslighting around her condition while working in the medical field herself, as a fertility nurse. “One day, I had to call my [lead nurse], saying, ‘I’m so sorry. I’m having a really bad time with my period and I can't walk or do anything.’ And she replied, ‘We’re all women; we all have periods.’ I was mortified. It left me thinking maybe I’m being weak and everyone feels this way.”
During one particularly bleak moment, Hadia recalls bleeding through her scrubs while assisting an operation. “I was in so much pain, and there wasn’t really any sympathy. It was just like, ‘Aw, is it a bad period?’ No one understood, even though we worked in IVF and infertility.” (FYI: Endometriosis can lead to fertility issues for many people.)
Thankfully, Hadia’s former career path is also what ultimately led to her diagnosis. “As I met more patients and heard their stories, I remember looking at one file and seeing the word ‘endometriosis.’ I didn’t really know what that meant, but I could see it was why the patient was getting IVF. When I had a chat with her, she told me her story and how the condition has affected her, and I was like, ‘Oh my goodness, this is my entire life.’”
Hadia says although she encountered a lack of support from some colleagues along the way, other doctors and nurses in her clinic encouraged her to go to her PCP—armed with the facts—and push for answers. “That’s what I did,” she says, highlighting that it shouldn’t take being a medical professional yourself to be taken seriously.
Cultural norms can also intersect with medical misogyny, Hadia adds. “I’m very lucky that my mom is supportive and my husband is amazing, but in South Asian culture, often it’s very much like, ‘You’re being a bit dramatic,’ and it can be the same on social media.” She refers to Australian radio DJ Marty Sheargold—who recently sparked major backlash after falsely claiming that endometriosis is “made up”—as just one example of female pain being minimized both on and offline.
Now, after surgery and trying different forms of medication (also including one that temporarily induced menopause), Hadia is waiting to hear what her next steps are and how she might build a longer-term treatment plan. “Nobody knows what to do, and the issue stems from a lack of research within women’s health. But you have to keep going,” she shares. “I’ve wanted to give up so many times, but you have to keep chasing your doctor, calling the hospital where you’re getting surgery, and asking if there have been any cancellations.”
Legal assistant Lily Elms, 26, knows all too well that more research and specialists are desperately needed.
Like Emma and Hadia, Lily faced a long road before getting diagnosed and was initially put on the pill as a teenager after reporting periods so bad that she would vomit and pass out. “They just said, ‘Oh yeah, that’s normal, you’re a woman now. You’ve got to deal with it,’” she remembers. At one point, a doctor even suggested Lily try having a baby to get rid of her symptoms, despite (a) there being no evidence that her endometriosis symptoms wouldn’t return post-pregnancy and (b) it being totally inappropriate.
“I was 23, had no partner, and lived at home,” Lily recalls. “I was financially unstable, never mind mentally and physically unstable, because of the amount of pain I was in. I was like, ‘How do you think I’m getting pregnant when I’m in too much pain to ever have sex?’”
Once she came off the pill two years ago, Lily says her pain instantly ramped back up— culminating in her writhing on the floor at work one day. “I wasn’t even on my period, which is why it’s annoying when people think it’s just a ‘time of the month’ disease. For me, it’s constant, but gets worse when I bleed. I was ovulating on that day, and just typing away as normal, when I had this horrifically sharp pain all throughout my pelvis, up my back, and down my legs. I had to go into a meeting room, and a colleague came in saying, ‘I can literally hear your squeak of pain from outside, you need to get checked out.’”
Lily, who has now taken so many sick days, she no longer gets paid for them, did head to her doctor’s office that day—where, thankfully, this time, she was seen by a PCP whose mother had endometriosis. This doctor immediately recognized that Lily’s experience was “textbook endo” and referred her to a gynecologist.
Sadly, Lily hit a brick wall during that next appointment: “She didn’t let me finish a sentence or properly explain that I have painful periods and ovulation, painful sex, awful bowel movements, back pain, leg pain, anything that you can think of. She just wasn’t listening.”
That meeting prompted Lily (with the help of her parents) to seek out an endometriosis specialist instead, who finally sent her for testing, which led to a diagnosis.
Lily shares that during her darkest moments, she has considered ending her life to escape the pain, but thankfully, she’s had the support of her loved ones to help her through. “But I’m never going to be pain-free, which is hard to come to terms with,” she reflects.
It’s clear that endometriosis is far from a “bad period,” or something that can be simply smoothed over with a hot water bottle and some painkillers, which is why it’s so important we keep the conversation around it going, spread awareness, and invest more money into women’s health.
Thankfully, some small, positive changes are happening. For instance, daily medications are being explored, like Myfembree, a hormone-lowering pill that can help with pain and bleeding associated with endometriosis (it was approved by the FDA in 2022). But for women like Emma, Hadia, and Lily, breakthroughs and much-needed conversations are still happening at far too slow a pace.
While we wait for the medical industry to catch up, sharing vital information about endometriosis can help alleviate some of the mental anguish that can accompany the physical symptoms that come with the condition. It’s time we ensure as many people as possible are clued in, should they need to seek a diagnosis in a world where, far too often, women’s pain continues to be misunderstood and overlooked.
Jennifer Savin is Cosmopolitan UK's multiple award-winning Features Editor, who was crowned Digital Journalist of the Year for her work tackling the issues most important to young women. She regularly covers breaking news, cultural trends, health, the royals and more, using her esteemed connections to access the best experts along the way. She's grilled everyone from high-profile politicians to A-list celebrities, and has sensitively interviewed hundreds of people about their real life stories. In addition to this, Jennifer is widely known for her own undercover investigations and campaign work, which includes successfully petitioning the government for change around topics like abortion rights and image-based sexual abuse. Jennifer is also a published author, documentary consultant (helping to create BBC’s Deepfake Porn: Could You Be Next?) and a patron for Y.E.S. (a youth services charity). Alongside Cosmopolitan, Jennifer has written for The Times, Women’s Health, ELLE and numerous other publications, appeared on podcasts, and spoken on (and hosted) panels for the Women of the World Festival, the University of Manchester and more. In her spare time, Jennifer is a big fan of lipstick, leopard print and over-ordering at dinner. Follow Jennifer on Instagram, X or LinkedIn.
