20 years of chronic pain, misdiagnosis, and neglect—this is Chiara’s journey with endometriosis
Two months ago, I had a fascinating conversation about menstrual leaks with Chella Quint, author of Period Positivity* and founder of the Period Positive movement. She pointed out that when a menstrual stain occurs, most people tend to blame themselves—thinking perhaps they didn’t anticipate the start of their period, or they didn’t change their menstrual product quickly enough, or they should have done more this or that. The shame of having a menstrual stain in public ultimately falls on the individual. Chella explained, however, that we should ask ourselves what this blood stain fear really tells us about how menstruation is integrated into society. Menstrual stains… happen, she says. We should find out more about what happens when people blame themselves and self edit – longtime menstrual researchers Sharra Vostral and Jill Wood have referred to the tendency to hide and self-blame as a result of “menstrual concealment”**. We should be asking: where did this sense of ‘dirtyness’ or ‘blame’ come from? The menstrual stain represents how menstrual blood and the menstrual cycle, in general, are treated in our society: a misunderstood phenomenon, something to be hidden, and any accidental or intentional visibility of it is met with shame, isolating menstruators and placing the responsibility for their cycles on their shoulders. Chella argues that menstrual literacy would promote self-advocacy and agency, which should lead to better policy, or at least put more pressure on policy makers to learn and grow.
Nearly 2 billion people around the world menstruate each month, and for many of them, simply having a menstrual cycle creates real barriers due to the discriminatory treatment of menstruation in society—through social norms, taboos, internalized shame, and inadequate infrastructure and policies. Through our organization, YesWeBleed, we seek to bring visibility to stories related to menstrual cycles—stories often kept private and personal, yet profoundly political and reflective of the violence faced by a significant portion of the population.
In November 2024, we called for submissions as part of our Stories from the Uterus event. We quickly received Chiara’s story, which she shared after seeing our post in a Facebook community for people suffering from endometriosis***.
Chiara got her first period at the age of 10. By 11, the abdominal pain was so intense that she would faint, sometimes at school, sometimes during family vacations. At this time, no one questioned her menstruation. Doctors thought it was due to poor nutrition, given Chiara’s body size. As the years went by, the length and intensity of her periods grew. She would sometimes spend hours in the bathroom, waiting for the flow to slow down. Sometimes, when she opened her eyes, she would find herself on the bathroom floor, having fainted. Like many people with painful periods, Chiara’s mother had experienced the same symptoms and told her that it was normal and that she should simply “toughen up” and bear the pain. This belief led her parents to withhold painkillers, despite her periods causing her to miss school for an entire week each month, and sometimes even longer.
At 17, Chiara received free tampons at an event on her university campus sponsored by a menstrual product brand. It was the first time she used one and realized that they absorbed much more blood than her usual pads. This accidental encounter was pivotal for Chiara because it made her realize how little she knew about her body and menstrual cycle. She immediately booked her first appointment at a gynecologist, who suggested ibuprofen to ease the pain. For the first time since the start of her periods, the pain was “manageable”. At 18, the gynecologist diagnosed her with adenomyosis**** and prescribed birth control pills. Chiara was told that these contraceptives “could either ease her symptoms or make them worse”—a real ‘flip of a coin’ situation. She started taking the pill, hoping for relief, but unfortunately, the opposite happened. The pill caused her to become depressed, apathetic, and suicidal, while barely easing her pain. Chiara described that time as the darkest of her life. She stopped taking the pill after a year.
At 24, while at work, Chiara felt an intense pain radiating down her leg. Taking painkillers allowed her to get through the day. The following day, the same thing happened – and it persisted for the next five days. That Sunday, the pain was so unbearable that she couldn’t move, and the painkillers no longer worked. She called an ambulance, but the paramedics told her she “shouldn’t have called them—it wasn’t life-threatening”. They prescribed stronger painkillers and advised her to see a gynecologist. For the next two weeks, while searching for a gynecologist accepting new patients, Chiara continued to suffer, sometimes fainting from the pain. Finally, she found an appointment and was diagnosed with an ovarian cyst. Chiara was recommended to take the pill again, with the suggestion that it might help. She refused, having already tried the pill with disastrous results. The following month, she experienced constant pain, bled every day, continued fainting from the pain, and had to take sick leave from work. Her boss called her weekly, telling her she was lying, saying that “menstruation couldn’t cause this kind of pain”. She didn’t believe Chiara’s story.
At 27, Chiara was in a relationship and decided to try a contraceptive vaginal ring. Her doctor told her that, since it was a local treatment, the risk of side effects would be lower. That wasn’t the case for Chiara. She lost a significant amount of weight, dropping to 46 kg, and suffered from depression and panic attacks. For the second time in her life, she had to stop using the contraceptive. The following year, living in Barcelona, she again felt intense pain in her abdomen, radiating down her thighs, just as she had three years prior. She decided not to waste time and went straight to a private clinic, paying 220 euros for a 30-minute consultation. Here, she received a diagnosis: her ovarian cyst had grown and ruptured, explaining the pain and bleeding outside of her period. Chiara was told to wait. A year later, she found out that the cyst was still growing, and more tests were needed to understand its nature. Unfortunately, these tests were delayed due to the COVID-19 pandemic. After the lockdown period, her gynecologist identified three ovarian cysts and referred her to an endometriosis specialist. In 2022, 21 years after her first period, at age 31, Chiara was finally diagnosed with endometriosis and needed laparoscopic surgery to remove the affected tissue. When she underwent the operation two months later, the doctor confirmed that she had a lot of contaminated tissue, but they had been able to remove it all.
Since the operation, menstrual pain no longer prevents Chiara from living her life. Although she still experiences some pain, it is nothing compared to what she endured before. It took 20 years of chronic suffering with severe symptoms for Chiara’s pain to be taken seriously. Her story highlights how generational beliefs that normalize menstrual pain, the lack of menstrual education, societal shaming, and the slow pace of scientific progress on menstrual diseases perpetuate injustice for people with menstrual cycles.
Menstruation is just the visible tip of the iceberg. We must acknowledge that a whole range of inequalities and discriminations surround the menstrual cycle. This awareness is key to understanding broader social and health issues. It’s time to collectively rethink the menstrual cycle from a fairer, more empathetic, inclusive, and informed perspective.
This is why it matters.
Notes
* English language book title: Be Period Positive
**Wood, J.M. (2020). “(In)Visible Bleeding: The Menstrual Concealment Imperative.” In: Bobel, C., Winkler, I.T., Fahs, B., Hasson, K.A., Kissling, E.A., Roberts, T.A. (eds.) The Palgrave Handbook of Critical Menstruation Studies. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-0614-7_25 – Menstrual concealment refers to the behavioral strategy where individuals actively hide or downplay signs of menstruation in social contexts. This is often done to avoid social stigma or discomfort and maintain a sense of normalcy in public or professional settings
*** Endometriosis is a medical condition where tissue similar to the lining of the uterus grows outside of it, often on the ovaries, fallopian tubes, or other pelvic organs.
**** Adenomyosis is a medical condition where tissue similar to the inner lining of the uterus (endometrium) grows into the muscular wall of the uterus.
Acknowledgments
I would like to extend my heartfelt thanks to Chella Quint for her invaluable help in reviewing and refining this post. Her insights and guidance were instrumental in shaping the final piece. A special thank you also goes to Chiara for her trust and for sharing her personal story during our interview. Her openness and willingness to contribute are deeply appreciated. Additionally, I am grateful to Kayra Hohmann Akbulak for reviewing the article and offering her thoughtful feedback.
Written by Pauline Gwet, founder of YesWeBleed. To read more about our mission and efforts to break the menstrual stigma, visit www.yeswebleed.org.