When Nicola Sykes, then a scientist at the biotechnology company Biogen, went off the birth control pill to get pregnant with her first child, her predictable monthly period stopped paying a visit.
At the doctor’s, her physician asked her the standard questions about diet and exercise: Sykes recalled that she was exercising two to three hours a day, seven days a week. Egged on by some colleagues, she had gone on a strict diet and lost a significant amount of weight a few months earlier, even though her Body Mass Index (BMI) was considered “healthy” by medical standards.
After ten months that involved blood tests, ultrasounds, and MRIs, Sykes was diagnosed with a condition called Hypothalamic Amenorrhea (HA) and was told she would need injectables to get pregnant.
Sykes’ diet and exercise did not come up again in her medical care. And the injectables didn’t make her pregnant.
Eighteen years later, Sykes has three sons and runs a subscriber-based online community for women with HA. Her Instagram @noperiodnowwhat has over 18k followers. This account is but one example of a newer corner of Internet dialogue, including fitness influencers and food bloggers, encouraging women to find answers to their irregular cycles, often outside of the traditional medical system.
Approximately fifty percent of women who exercise experience irregular periods, while thirty percent don’t menstruate at all. A common culprit is HA (also known as FHA), which occurs when the hypothalamus, the brain’s control center, stops releasing hormones that start and regulate the menstrual cycle. In general, HA is most commonly associated with female athletes, women with eating disorders, or women under excess stress. “FHA is nature’s defense mechanism,” said Chrisandra Shufelt, M.D., the Associate Director of Women’s Health at the Mayo Clinic Florida and Principal Investigator for an ongoing HA study. “If you’re so stressed, your body will respond. Meaning if you are not doing a good job of supporting yourself, you won’t be able to support a growing baby. Your body shuts down your reproductive axis for a bit until you can turn things around.” HA’s relationship with eating disorders means that it is commonly associated with low body weight, but Shufelt reported that many of her patients have “normal” BMIs, although they may have experienced recent weight loss or stress.
“FHA is nature’s defense mechanism...if you are not doing a good job of supporting yourself, you won’t be able to support a growing baby. Your body shuts down your reproductive axis for a bit until you can turn things around.” Chrisandra Shufelt, M.D., Associate Director of Women’s Health, Mayo Clinic Florida
Although few people look forward to their visits from Aunt Flo, most only take her absence seriously when they want to get pregnant. But the unexpected loss of a period means more than infertility. A review article that Shufelt lead authored in 2017 stated that in the event period loss is due to HA, long-term repercussions of low estrogen levels can result in osteoporosis and potential risks to the heart. Heart disease is the leading cause of death for women in America.
“I think the menstrual cycle should be a vital sign,” Shufelt said. “For example, if your heart rate’s abnormal or irregular, we want to investigate why. Well, it should be no different with your menstrual cycle.”
By the time she was sixteen, Svea’s period was coming once or twice a year, at most. A busy teenager with an attraction to karate, ballet, and swimming but an aversion to saying “No”, her doctor recommended going on the birth control pill and a predictable cycle of periods ensued. But now twenty-three and in university studying mathematics and physics, Svea has been off of birth control for over a year but hasn’t had a period since (she agreed to discuss her medical condition if her full name was withheld). Svea learned about Nicola Sykes’ work online and wondered if it was possible she had HA. After visiting three different physicians, Svea was able to convince someone to check her hormones, and she received an official diagnosis.
“I don’t think we’re adequately training the doctors about FHA. So if we’re not training the doctors and a woman comes in with this condition, doctors will not know what to ask or how to treat it. Women that don’t get answers from their healthcare providers ultimately are going to seek information online and talk to their friends to find support.” -- Chrisandra Shufelt, M.D.
When asked about why women are going online for answers about HA, Shufelt acknowledged that some have had difficult experiences with the medical system. “I don’t think we’re adequately training the doctors about FHA. So if we’re not training the doctors and a woman comes in with this condition, doctors will not know what to ask or how to treat it,” she said. “Women that don’t get answers from their healthcare providers ultimately are going to seek information online and talk to their friends to find support.”
Birth control is a popular option for addressing irregular cycles in women, but Shufelt reported in her 2017 review article that it can mask the problem and fails to address potential complications such as bone health. . A national supporting study conducted on competitive female runners in their teens and twenties failed to reach conclusive determinations as to whether birth control protects women with HA from bone decay.
“People say ‘Oh, well I took the pill and my cycles became regular. Well those are completely artificial periods.” said Valerie Baker, M.D., the Director of Reproductive Endocrinology and Infertility at the Johns Hopkins University School of Medicine. “That means that even if a woman is on the verge of ovarian failure, she’s still going to have regular periods on the pill.”
Some women with HA also report being misdiagnosed with Polycystic Ovarian Syndrome (PCOS), another common cause of missing periods. PCOS occurs when small sacs of fluid, known as cysts, develop along the outer edge of the ovary, which release large amounts of androgens such as testosterone. Women with PCOS can also lose the ability to ovulate, or release an egg from their ovaries, and thus they stop menstruating. However, the treatment recommendation for PCOS often involves recommendations to increase physical activity and lose weight, a regimen anathema to recovery from HA.
“HA is a diagnosis of exclusion, meaning you have to exclude all these other causes and really identify what is the poignant underlying culprit,” said Shufelt. Shufelt acknowledged that misdiagnoses in both directions could occur, where women with HA could be misdiagnosed with PCOS and vice versa.
Finding Online Community
After reversing her HA, getting her period back, and conceiving her first child, Nicola Sykes found herself on bed rest for her 2006 pregnancy, which gave her a lot of spare time. She was already running a blog where she had documented her HA recovery journey, but now she was also posting about her experience in a forum on the website FertileThoughts every day.
“It just sort of continued because I really enjoyed the feeling of helping people, and I gathered a lot more information and knowledge through that experience,” Sykes said.
In 2016, Sykes published the book No Period. Now What? about hypothalamic amenorrhea with her own recommendations for recovery: eating more, moving less, and reducing stress. Sykes backs up the specifics of her recommendations with research, but building upon skills from her Ph.D. in Computational Biology from MIT, she also includes her own data from a survey of 330 women with HA that she conducted through the FertileThoughts message forum.
Beyond her book, Sykes has transitioned off of older messaging forums and is now active on Facebook. In the past, she was an admin for a 6.7-thousand-member Facebook support group and now offers a support group by monthly subscription. On top of everything, Sykes offers wellness consultations for women with HA with pricing ranging from $20 for a bloodwork review to $675 for a six-session package.
“I think again, there are very few doctors that have much experience with people with HA at all and so they just don't have the same level of knowledge and understanding about the changes that need to happen,” Sykes said when asked about why clients might seek her out in addition to or instead of a medical doctor. Svea noted in her interview that she is currently working with Sykes because of worries that, if she seeks out traditional medical help or counseling, additional diagnoses of an eating disorder or of osteoporosis could adversely affect her employment prospects as a teacher in Germany, where she lives.
“...there are very few doctors that have much experience with people with HA at all and so they just don't have the same level of knowledge and understanding about the changes that need to happen.” --Dr. Nicola Sykes, wellness coach, on why clients might seek her out in addition to or instead of a medical doctor
Because Sykes’ preliminary HA research survey and analysis was informal, she never submitted her research for peer review from other scientists. As a result, her research was never published in a traditional academic journal that most medical professionals would review. Sykes reported that although she thought about academic publication and might do so in the future, she wanted to prioritize releasing her research to other women rather than only to other scientists. She noted that the majority of her cited research is from medical journals. In addition, her Facebook group does contain a medical disclaimer in the group guidelines encouraging outside support.
Reactions among Shufelt and Baker to the support group were mixed. Baker cautioned for an accurate, formal medical diagnosis of HA before seeking out any outside information: “I think it’s really dangerous for women to seek online support without having a clear understanding of why their menstrual cycles are irregular because the health implications of the various types of amenorrhea are different.” Shufelt does know of Sykes’ book but has not explored her support group: “With these support groups, it’s important to go to ones that are academically supported, meaning that they have science-backed resources,” she said.
However, both agreed that there is a dearth of knowledge about the condition. Despite HA being relatively common and potentially serious, Shufelt pointed out that the most recent guidelines to treat the condition were published by The Endocrine Society in 2017. This is partially a product of a historic lack of research into women’s health. Researchers reported in 2020 that a search of the term “menstrual blood” in PubMed, a popular biomedical research database run by the National Institutes of Health (NIH), yielded 400 results from the last decade. A subsequent search of the term “semen” yielded 15,000 publications. If traditional medicine and research avenues are a bit behind, it may not be a surprise that women are trying to find answers elsewhere.
“I'm hopeful that people recognize that those conditions that uniquely affect women do need to be called out and specifically studied. And not only disorders that just affect the whole population and then women.” -- Valerie Baker, M.D., Director of Reproductive Endocrinology and Infertility, Johns Hopkins University School of Medicine
“I hear what women say to that and I feel their frustration,” says Shufelt. “And at the bottom, at the end of the day, it really does come down to research, right? Research is what changes treatment guidelines. It's what we need, and that's where I see that research like mine is making a difference.” Baker echoed Shufelt’s thoughts: “I'm hopeful that people recognize that those conditions that uniquely affect women do need to be called out and specifically studied. And not only disorders that just affect the whole population and then women.”
But unless more systemic changes occur to how scientists and healthcare providers generate knowledge about and treat these conditions, the ultimate answer to HA support for young women like Svea may lie somewhere in the grey between research and lived experience.