Why women’s* pain always matters. Period.
By Tyler Donohue, Aurelia Auerbacher, Milena Bacalja Perianes and Biva Rajbhandari
Disclaimer: The authors of this article have been vaccinated and encourage the use of vaccines as an essential public health intervention. We believe the uptake of the COVID-19 vaccine is an important step in the COVID-19 response. This is not intended as a discussion about whether or not to get vaccinated. Rather it is meant to shed light on the gender bias in public health research and systems. We believe this discussion is important because misinformation causes mistrust and in turn influences women’s and other marginalized populations’ health decisions, for instance choosing not to be vaccinated and thus exposing themselves to other greater health risks.
“It’s virtually impossible for this vaccine to affect your period,”
said the doctor dismissively as he injected the second dose of the COVID-19 vaccine into my arm. Having experienced excruciating pain and heavy bleeding after my first dose, it took all my self control to quell the rage inside of me, lest I be characterized as hysterical.
I took a deep breath and replied, “Impossible is a big claim to make.”
This is just one of the anecdotes collected by women around the world who have observed or reported changes to their menstrual cycle after receiving a dose of the COVID-19 vaccine. Like many women, she was not told about any side effects and her concerns were minimized — if not flat out dismissed — by health experts.
On January 5th, 2022 the first study exploring the link between the COVID-19 vaccine and menstrual cycle was released and it indicated that there was a “small change in cycle length but not menses length” according to the researchers. Women*, there is no need to be concerned, but yes your experiences are valid!
Since the global roll-out of the COVID-19 vaccination, almost 10 billion vaccines have been administered to date. Various side effects were reported from clinical studies including fever, headaches, or pain during or after the injection. However, significant changes to the menstrual cycle were not named as a possible side effect until approximately August 2021 (and only in a limited number of countries.)
This issue gained global attention when, after experiencing side effects around their menstrual cycles, Professor Kate Clancy and Ph.D. Alumna Katie Lee from the University of Illinois launched a survey to better understand the relationship of the COVID-19 vaccine on the menstrual cycle. Over 140,000 people responded. Respondents reported changes to their menstrual cycle and effects on ovulation, cycle length, periods, and cramps after receiving the first or second dose. People years into — or even decades after entering menopause reported unexpected bleeding, as did some transmen. Additionally, data gathered by the UK MHRA office reported over 40,000 suspected reactions to the menstrual cycle.
In response to growing concerns and self-reported side effects, doctors and experts have continuously dismissed these experiences and attributed it to women “being stressed” when undergoing vaccinations, or stating that menstrual cycles, in general, are irregular — despite many cycles being extremely regular. When surveyed, one woman wrote that she “[had] regular periods all of [her] life.” She, like so many other women, experienced massive shifts in her cycle after she got her vaccination, and “didn’t get [her] period for 48 days after getting [her] first shot.”
Doctors and researchers have also attempted to quell these concerns by ensuring that the vaccine is not negatively affecting fertility, which is good news. However, menstrual cycle health is not just about reproduction. It is linked to overall health and wellness, so much so that some menstrual health experts consider the menstrual cycle the fifth vital sign and the American College of Obstetricians and Gynecologists recommends using the menstrual cycle as a vital sign for girls and adolescents.
Concerned by our own experiences, and the minimization of the growing number of women claiming the vaccine affected their cycle in some way (and those of women around us), we (Madami, a female-founded, Berlin-based social impact agency that focuses on menstrual health and Women-Centered Design) surveyed close to 250 women to better understand the side effects on cycles after one or two doses of the COVID-19 vaccine. This data was complemented by Quilt.AI which used its Cultural AI tool to analyze 60,000+ online searches and 500+ social media conversations around the menstrual cycle and the vaccine.
When we embarked on this research topic to understand the potentially harmful side effects of the COVID-19 vaccine on menstrual cycles, we were advised by fellow feminist colleagues, health professionals, and activists,
“You really shouldn’t touch this topic. You will only fuel anti-vaccine sentiment further.”
To reiterate, we are firm believers that everyone who is able to get vaccinated should get vaccinated.
But isn’t women’s pain worthy of conversation? Aren’t women’s bodies and their health experiences valid? What happens when the healthcare industry ignores the concerns of women? Where do they turn? Are we giving people opposed to the COVID-19 vaccine the room to fuel misinformation?
The recent study results demonstrate that women’s concerns about their health are valid. While this first study (several more have been funded) suggests that the impact is ultimately minimal and not a danger, continuing to ignore or silence women is.
One can be pro-vaccines, while also feeling alarmed about the impact of misinformation, or more often, no information around menstrual cycles and the COVID-19 vaccines. Will my cycle be affected? What side effects could I experience? I am in more pain or experiencing heavier bleeding… is that normal?
These are questions that must be answered. When we stifle conversation one must wonder where do people go for information? What impact do these unaddressed concerns have on other women’s future acceptance of vaccines more broadly?
Fear and silence are the breeding ground for the very kinds of misinformation and alternative “facts” that perpetuate vaccine hesitancy and much of our current public discourse. Isn’t it time to break the vicious cycle?
Within the historical context of menstrual pain and related discomfort being routinely ignored and minimized by healthcare professionals, we believe it’s time to have a real conversation.
When hundreds of thousands of women report changes to their regular cycles or post-menopausal women to report sudden spotting post-vaccination — something is happening that should not be ignored. If this same number of men reported experiencing unexpected excretions or pain in their penis, would we be so quick to ignore or minimize it?
Similar to the stories that were shared online, our own survey found that the vast majority of respondents reported side effects up to 2–3 months after getting vaccinated. While many expressed concerns about the sudden onset of their periods within days of having the vaccine, they also commonly reported heavy bleeding or large clots, painful cramps, delayed ovulation and/or longer period duration. Almost half of the respondents indicated that the first and/or second period after the vaccine was not “business as usual”.
Interestly, and importantly, almost all reported that they would still choose to get vaccinated again.
Despite their willingness to get vaccinated, 90% of respondents said that they were not informed of any possible side effects related to ovulation or menstruation after vaccination. Some respondents thought they may be pregnant when their periods were more than 10 days late, or worse, they feared that they had cervical cancer when unexpected bleeding began years after they experienced menopause.
Our sample was small, but Professor Clancy’s is not. This absence of real conversation raises grave concerns for what happens next when you are in pain and no one listens. We wonder how those opposed to taking the COVID-19 vaccine could potentially use the vacuum of information to fuel their own conspiracy theories?
As people — especially women — grappled with the lack of available information, many turned to an all too familiar source, the Internet, to see what they could find to help fill in some of the gaps in their knowledge In collaboration with Quilt.AI, we analyzed discourse on Twitter and Google searches to understand how people were using the Internet to access information on vaccines and menstrual cycles. We studied 61,750 searches from the U.K. and the U.S., and 533 tweets from around the world.
Increased global search trends spiked between March to May 2021, when major vaccine campaigns were rolling out. Globally, the highest peak was April 2021, the same month the first study on menstrual health and the COVID-19 vaccine was launched. In the U.S., searches related to the COVID-19 vaccine’s effect on periods grew by 27,783% between March and May 2021. These searches included keywords such as ‘vaccine periods’ (+12,717%), ‘vaccine menstruation’ (+6,544%) and ‘vaccine period changes’ (+100%). These queries often redirected people to articles on complaints of side effects by NPR and Medical News. Similarly, in the U.K., searches related to periods and vaccines grew by 12,056%. In the U.K., people were redirected towards the BBC, Medical News, or academic journals.
To successfully mitigate the spread of misinformation, and particularly anti-vaccine sentiment, it is crucial that people are redirected to websites with easy-to-understand evidence, such as the Center for Disease Control or World Health Organization. Such organizations have the authority to inform and implement regulations related to protecting the health and safety of citizens in their countries in the world, and clearly presented evidence can undermine and invalidate misinformation about vaccines.
It’s important to note that gender bias is not the only tension here. Minorities, particularly women of color, have long been neglected and gaslit by the medical establishment, which leads to worse health outcomes. If gender bias and racial bias continue to exist in public health research and campaigns, people will continue to turn to the Internet to find the information they need.
The information they receive there can be inaccurate, confusing, or even harmful at times. As one public tweet stated, “Since I’ve tried to do my own research and still found little to nothing on delayed periods after the vaccine, hopefully Twitter can help me out. Any other girls here that had experienced an irregular cycle after getting the vaccine???”
People took to Twitter to share their menstrual cycle changes after receiving the vaccine, to share information about it, even to promote anti-vaccine sentiments.
Amongst those who shared their experiences (32.3%), 89.3% were negative experiences — such as heavy bleeding or severe period cramps. Almost half (42.5%) of the narratives examined by Quilt.AI were action-oriented. This entailed tweets calling for more information on the vaccine’s impact on the menstrual cycle, and demanding that more research be done. There was also an emphasis on the imperative to include women’s specific health experiences within research studies.
We cannot continue to ignore the fact that there is a bias in healthcare research, systems and campaigns. The reality is that there are a number of studies that show that women in pain are much more likely than men to be misdiagnosed and less likely to be prescribed pain medication.
What is the true impact of a system that intentionally or unintentionally ignores your experience?
The development, testing, roll-out and communication around the COVID-19 vaccine is just one new example of how half the world’s population has been left out of the conversation. As we look to the future of this pandemic and public health more broadly, we need to start thinking about the people within a population. Treatment must be individualized and personalized.
Women and people who menstruate make up half the world’s population and their menstrual cycle will be a vital sign of their health for over forty years of their life. As such, surely it should be taken into account in medical research and public health campaigns.
Women’s voices and experiences matter not only because listening to them can lead to more informed health decision-making for women, but also the people around them.
Results from the recent study help elevate women’s experiences as areas worthy of research. Ultimately, the authors concluded that women who had been vaccinated experienced slightly longer menstrual cycles after receiving the vaccination than those who did not. More specifically, cycles were on average 1 day longer. These results are a good start in understanding the connection between the COVID-19 vaccines and the menstrual cycle better, however, more is needed. Although eight-day longer cycles than usual are already considered clinically significant, the conclusion of the study does not account for the many people who experienced extremely longer cycles than usual. In addition, open questions remain regarding “other possible changes in menstrual cycles, such as menstrual symptoms, unscheduled bleeding, and changes in the quality and quantity of menstrual bleeding”. We hope that future studies will take women’s pain into account in their research.
While we continue to wait for the medical industry to stop using males as the placeholder for humans, we call on the health industry to ensure that the data we are consuming about our health and wellness is evidence-based, sex-disaggregated, and inclusive of all sexes and genders.
We are ready for a change… and it starts with a proper conversation.
*We recognize that not all women menstruate, and not all who menstruate identify with being a woman, and strongly advocate for the inclusion of diverse voices, identities and bodies in discussions around female and menstrual health.