Of course, health scientist Lisa Zuidema (27) sometimes heard friends or fellow students complain about their heavy periods. And she saw videos of influencers who shared their experiences via social media. That they called in sick from work for a few days every month or even fainted from bleeding. It’s not that Zuidema didn’t believe it, but could she really imagine it? No, not actually.
Now that she has completed part of her PhD research in the gynecology department of the Máxima MC in Veldhoven, things are different.
Zuidema obtained her PhD with (now retired) gynecologist and professor Marlies Bongers. For more than thirty years, Bongers saw ‘menstrual suffering’ in the consultation room: women who suffered terribly from pain, heavy blood loss or mood swings, but did not know, or only discovered much too late, that they could contact a doctor for this.
“That is what a menstrual taboo does to women,” says PhD candidate Zuidema. “According to research, a quarter of all women experience their menstruation as ‘heavy’, but out of shame, a large proportion of them continue to suffer from unnecessary complaints.” That taboo also exists among doctors, says Zuidema. “GPs and gynecologists who see these women in their consultation rooms do not always know how heavy a period can be.”
Menstrual stories
That is why Zuidema, in collaboration with the University Medical Center Groningen, created a website with experience stories, which will be launched on January 22. People who menstruate (women and trans men), their loved ones and doctors can then consult the collection via the website TalkingAboutHealth. Zuidema recorded the experiences of more than 30 people who menstruate, in text, images and sound. These stories are about avoiding walks or nights out for fear of leaking. About the shame of going on a date while you’re on your period. In a week you won’t be able to do housework or even go to the supermarket. Zuidema spoke to people who sleep with double tampons or wear rain pants at night for fear of leaking, and people who literally crawl around the house because of stomach pain.
But she also sat across from people for whom their periods pose few problems, who even celebrated their first period with chocolate balls. She also wanted to capture those stories. “I have tried to collect as diverse a range of experiences as possible.”
When is menstruation problematic? “There is a large gray area between having no complaints at all and a clear medical diagnosis such as endometriosis – a condition in which tissue that resembles the uterine lining is located outside the uterus, for example on the ovaries. Many women suffer from menstruation, but there is not always a medical label attached to this.”
It is precisely that twilight area that fascinates Zuidema. “I am not a doctor myself, so it is not up to me to determine what ‘normal’ is. I just wanted to show how much variation there is in the experiences of people who menstruate.” Zuidema interviewed not only women, but also two trans men: women who were transitioning into men, but still menstruating. “Precisely because I wanted to paint as broad a picture as possible, this group could not be missed.”
Talking in the community center
What Zuidema also learned is that talking about menstruation is not self-evident for everyone. And the fewer different experiences you know, the more decisive the examples you do know.
Many women of her own generation grew up with girls’ magazines, and then with social media such as Instagram and Tiktok, platforms that offer you personal stories of other women with similar experiences or completely new perspectives. But for her research, Zuidema also sat at a large table in a community center in Groningen, surrounded by a group of about fifteen women with a non-Western background. They had never talked about their periods with each other, or with anyone else.
“The founder of the community center warned me: the chance that these women would share their experiences with me, one on one, was small.” Zuidema joined us when the women had just completed a sports lesson. Unexpectedly, a special group discussion arose.
“For these women, menstruation was something they had always endured in isolation. One of them told me that she always ate secretly during Ramadan, while fasting is not necessary when you are menstruating. It was her way of hiding the fact that she was bleeding.”
Document unique experiences
Zuidema worked according to an internationally embraced, qualitative research method to document unique experiences of patients, developed at the University of Oxford. This method was founded on the belief that research results are not only published for scientists and doctors, but also become publicly accessible.
As a health scientist, walking around among gynecologists every day took Zuidema almost a year and a half to get used to it. Her research method, based on interviews with subjective experiences, is not common in medicine. This usually revolves around measurable data, hard facts and figures.
“I was often unable to discuss specific medical topics and some colleagues did not understand what exactly I was doing there.” But once in the living room with the women she interviewed, Zuidema remembered that that is what she likes about her work. Don’t make the diagnosis, but have the conversation. “Where the gynecologist’s work often stops because doctors have little time, that is precisely where there is still so much to be gained from the taboo atmosphere.”