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In 2006, LaToya began having really bad periods. Some as long as 16 days. They were so heavy that she compared the gush to having her water break in labor, and they were accompanied by terrible pelvic pain that the 39-year-old from Brooklyn, New York, described as feeling “like someone had stabbed me with a hot poker in my vagina, my uterus/lower abdominal area, and my rectum.” It hurt to sit down, it hurt to stand up — and forget running or jumping. Bleeding was so constant and irregular that she felt faint all the time and experienced “instances of brain fog and memory loss.” LaToya had to take time off work and feared going out (in case she didn’t have enough sanitary supplies) or, worse, visiting someone else’s house, where she was embarrassed she might ruin their furniture with breakthrough bleeding.
Talking with other women about their periods didn’t help much, since they weren’t having the severity of symptoms that she was.
While LaToya’s gynecologist diagnosed her with a fibroid, the doctor’s only advice other than birth control (which didn’t fit with LaToya’s desire to grow her family) was to “watch and wait,” she says. Yet her symptoms only worsened to the point where she sometimes feared she would black out from pain. “Sometimes I didn’t know how I was going to go on living if this was my new normal,” LaToya says.
She became depressed and angry with her gynecologist. “She didn’t really listen to me or acknowledge my pain and my experience.”
Bleeding men are revered. Blood spilled in war is heroic and earns men respect; blood brothers show their deep, abiding loyalty with a slash of crimson between palms. That reverence comes to a screeching halt the moment the blood is pouring from between a woman’s legs.
Historically, in many cultures — even in the Bible—menstruating women were seen as unclean, dirty, evil. In one ridiculous extreme of the attitude, 1920s doctor Béla Schick went so far as to try and prove there were poisonous “menotoxins” in women’s menstrual blood that could infect anyone who came in contact with it.
While those attitudes may seem egregious today, menstrual squeamishness still exists as a source of comedy and disdain in popular culture. How many times have you heard the joke “what bleeds for seven days and doesn’t die” as a source of male laughter? Even in a time of period activism and the free-bleeding movement, menstrual products are still marketed with an emphasis on discreet packaging, and women’s reproductive health is still undertreated by the medical establishment.
These long-held and slow-to-disappear stigmas are based on uneducated and oppressive patriarchal attitudes that still make their way into modern medicine and are dangerous to girls’ and women’s health. In extreme cases, such taboos prevent women from getting diagnoses, treatment, or education about more serious health conditions.
Part of the problem is that women’s health has not been studied in the kind of depth that is needed, with researchers often citing the variability of women’s menstrual cycles as reason to exclude them from clinical trials, most notably those on coronary heart disease (the number one killer of women in the United States) and drug efficacy and safety.
Meghan Cleary, a writer, speaker, and advocate specializing in clinical gender bias and founder of the website Bad Periods, a repository of research based on personal experience, finds the lack of knowledge frustrating and insulting. “The NIH [National Institutes for Health] didn’t require that women be included in medical studies until 1991, and that’s only government studies,” she points out. “It was only in 2011 that they figured out women present with heart attacks differently. There is very little clinical information [about women’s bodies].”
Marni Sommers, associate professor of sociomedical sciences at Columbia University who focuses on gender, health, and education in sub-Saharan Africa and Southeast Asia, writes in a 2017 paper published in BMJ Global Health, “In many societies, cultural taboos frequently hinder open discussion around vaginal bleeding, restricting information and early access to healthcare.”
Sommers and her co-authors are calling for greater attention to non-menstrual-bleeding episodes, including those related to pregnancy, childbirth and postpartum, miscarriage, cancers, and endometriosis.
There is still a long way to go toward education around women’s bleeding in less developed countries. Religious norms, cultural taboos, poverty (which leads to harder access to supplies), and lack of education create a climate of poor health for women and girls, many of whom drop out of school or can’t work due to issues related to stigmas, access, and privacy around their periods.
Another of Sommer’s studies, published in the journal Conflict and Health, describes a condition most of us world never even have to think about: refugee girls and women, who may spend weeks in transit fleeing conflicts or long periods of time in refugee camps where aid workers may not be fully educated about how to talk to them about their needs.
“If a girl or woman is walking three to five days across countries or borders to get someplace safe, the last thing she may have thought about when fleeing her home is ‘Did I bring cloths to manage my period?’” Sommer told me by phone. “Whenever I see pictures of women and girls coming across in boats, I think, ‘How are they managing [their periods]?’”
Even here at home, the medical establishment has a long way to go in understanding common disorders that cause bleeding in women.
In July 2016, a 42-year-old woman in Oakland, California, named Sarah thought her normal, typically five-day-long period was at its end. Suddenly she began bleeding anew, filling a pad or tampon every 15 minutes, as compared to once every four to eight hours during a regular period.
She planted herself on the toilet, where, she says, “Blood was coming out of me like a faucet. It was just pouring out.” This included huge blood clots, one as big as “half of my head.” Eventually Sarah put herself into the bathtub to free-bleed because it was easier than changing pads.
Dizzy and weak, Sarah told herself that if it would just stop, she’d be okay. When it didn’t, her husband took her to the ER.
Once there, Sarah says she felt dismissed as overreacting to a heavy period. The OB-GYN who attended to her advised that abnormal bleeding “just happens sometimes” and to take Advil and go home. “I asked if it would come back, and she said, ‘You’re probably fine.’”
But the next afternoon, Sarah’s bloody gush was back and not stopping. By the time her husband took her to the ER again, she was fighting to stay conscious.
“The nurse told me that if I didn’t get a transfusion, I would probably die.”
Four days in the hospital, six transfusions, and several CT scans, ultrasounds, and blood tests later, doctors had no answers for her except a burst ovarian cyst, which explained her pain but not her bleeding, and an abnormally thick endometrium, for which they had no explanation. They put her on birth control pills, which eventually slowed (though didn’t completely stop) the bleeding. “[I] took matters into my own hands,” Sarah says, adding acupuncture and Chinese medicine, which helped some.
It would be several more months until Sarah got answers. She would have to demand them from her doctor.
These kinds of stories come as no surprise to Cleary, who herself spent years trying to get accurately diagnosed with life-altering endometriosis. “Anything that is below the belly button on women gets put in the ‘gyno ghetto,’” Cleary says. “Anything having to do with your period automatically is not as valued,” Cleary adds.
And all of these issues are significantly worse in women of color, particularly black women, who, compared to white women, have heavier menstrual bleeding, triple the risk of postpartum death due to blood loss or blood clots, and three times the likelihood of developing fibroids that are symptomatic, among other conditions.
However, many of the issues associated with vaginal bleeding and pelvic pain are not actually related to menstruation, Cleary points out. “They’re endocrine-related. Even though you’re bleeding out of your vagina during your period, it’s not 100 percent a period problem. You have a fibroid in your body because your endocrine system is not processing extra estrogen, for example,” she says.
Many women get their advice from their OB-GYNS, but Cleary is not a huge fan of the way OB-GYNs are trained, believing their expertise too diffuse. “They may deliver a baby on Monday, do a fibroid surgery on Tuesday, and then a hysterectomy on Thursday. There’s no other specialty like that,” she says.
LaToya experienced that level of frustration with her OB-GYN, whose focus seemed to be primarily on pregnant women. “I wish she would’ve admitted that [fibroids were] outside of her specialty.”
She eventually did her own research to find a fibroid specialist, who insisted LaToya immediately get blood transfusions, iron infusions, medications, and eventually surgery, as her fibroid was not a watch-and-wait situation after all. “We needed to get it out,” LaToya says. Since her surgery, in June 2016, LaToya’s periods have returned to normal, and her pain is manageable with heat and ibuprofen.
In Sarah’s case, it was the ultrasound tech who revealed the fibroids her doctor had previously ruled out. Sarah recalls, “I said, ‘No, you’re mistaken. My doctor said I don’t have fibroids.’ The tech looked up at me and said, ‘Yeah, you do, and they’re big.’”
Her OB-GYN still didn’t mention the fibroids in the follow-up call until Sarah reported the tech’s results. Stammering and defensive, the doctor had no choice but to admit she had looked only at Sarah’s ovaries and endometrium.
“I was pissed at her. Why did she miss that? How did the tech see it clear as day, and this woman, who has an education and is a practicing doctor, how did she overlook that? How did she tell me to my face, ‘You do not have fibroids’?” Sarah says.
In a world that treats almost all vaginal bleeding as menstruation-related (and even just women being hysterical), Cleary encourages those with such conditions as endometriosis, polycystic ovary syndrome (PCOS), interstitial cystitis, and the like to talk to their care providers “not in gynecological terms, but organ dysfunction, pain, blood loss, and anemia,” because that’s what it takes to be treated seriously.
“I think a lot of it just seems to come back down to the fact that menstruation and breastfeeding and functions of that nature are problematic because women do them. It ties back to misogyny,” says psychologist Ingrid Johnston-Robledo, who co-authored a paper titled “The Menstrual Mark: Menstruation as Social Stigma.”
She quotes from Gloria Steinem’s famous article for Ms., “If Men Could Menstruate.” Steinem writes, “Clearly, menstruation would become an enviable, worthy, masculine event…Men would brag about how long and how much.”
Instead, women with means and resources must advocate for and educate themselves. On behalf of women without such resources, Sommer and her colleagues are pushing the field to do more research on menstruation and other types of vaginal bleeding “and all the implications for going to school and work and their ability to function and perform.”
Despite everything, Sommer remains in awe of women’s strength through these challenges: “I’ve been struck by the extraordinary resilience of girls and women to silently endure despite it all.”