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Can endo be triggered by trauma? It’s a question more researchers — and people living with this life-altering condition — are asking. While endometriosis has long been viewed through the lens of hormones and genetics, new studies are shining a light on another potential factor: trauma, particularly in childhood.
Dr. Dora Koller knows this experience all too well. After 15 years of being dismissed, misdiagnosed, and told her pain was “normal,” she finally got answers — and has since made it her mission to revolutionize how we understand, diagnose, and treat endometriosis. Her latest research doesn’t just validate the lived experiences of many — it opens up a whole new way of thinking about endo, including how trauma might play a role in triggering or worsening it.
Here’s what you need to know about the trauma-endometriosis connection, what the latest research says, and how this could change the future of endo care for the better.
Endometriosis symptoms aren’t “just bad periods”
At 12 years old, Dr. Dora Koller got her first period. During her first few years of menstruating, she often fainted from losing too much blood and felt she could hardly stand the pain, but everyone told her she must have been overreacting.
Physicians ignored her symptoms, and she went undiagnosed for 15 years with only contraceptives to provide temporary relief. During this time, she earned a PhD in clinical pharmacology and continued research at Yale University as a post-doctoral fellow.
“I planned everything around my pain, my PhD defense, my wedding, everything,” Dr. Koller recalls, a tactic many endo-warriors can probably relate to.
At 28, Dr. Koller took a chance on the Spanish healthcare system and got diagnosed with deep-infiltrating stage four endometriosis. Tissue similar to the endometrial lining (which normally grows inside the uterus and sheds during menstruation) had grown outside her uterus and covered all of her abdominal organs. It was even visible without an MRI. She underwent emergency surgery and now lives symptom-free (with the help of medication). She also gave birth to her daughter in 2023. “Why don’t we know more about it?” Dr. Koller recalled asking. “So many women suffer from it — how is it possible people don’t even know what it is when I mention it to them?”
A diagnosis shouldn’t take 10 years — period
This lengthy path to an endometriosis diagnosis is unfortunately all too common — many with extreme period pain are told it’s normal (it’s not!). There is still much unknown about what causes endometriosis, and symptoms are not completely consistent among all cases, causing it to take, on average, seven to ten years to diagnose.
Inspired by her traumatic 15-year journey to a diagnosis, she has made it her life’s work to find better and faster ways to diagnose endometriosis. As a post-doctoral fellow at the University of Barcelona, Dr. Koller started EndoCare Therapeutics in 2023 to address this knowledge gap and conduct research for “a cost-effective, fast, and non-invasive” method for diagnosis.
Her most recent study suggests that traumatic events may be risk factors for some women living with endometriosis. We’re here to break down the study’s results and what they might mean for the future of endometriosis diagnostics and potential trauma-based treatments.
The study found a link between endo and trauma
Previous genetic research has confirmed the link between poorer mental health outcomes and endometriosis. This led Dr. Koller and her co-authors to wonder: if childhood trauma is a risk factor for poorer mental health in adulthood, could there also be a correlation between trauma and endometriosis?
The study confirmed their suspicions. They found observational evidence that women with endometriosis were more likely to report traumatic experiences than women without, specifically emotional or physical trauma and sexual trauma. The data from the UK Biobank included around 8,000 women with endometriosis and about 240,000 female controls.
The study also investigated genetic connections between endometriosis and traumatic experiences, finding a potential pleiotropic relationship between endometriosis and PTSD and childhood maltreatment.
You may recall the Austrian priest Gregor Mendel and his pea plants from the genetics unit of Biology 101. Looking at genetic inheritance, he observed that the pea plants’ seed colors were always associated with a specific flower color. Scientists call this pleiotropy, or when one gene contributes to two or more apparently unrelated phenotypic, or observable, traits. In the context of this study, the pleiotropic relationship means that there may be genes that affect both the development of endometriosis and vulnerability to PTSD following childhood maltreatment.
PTSD develops through a combination of environmental factors and genetic factors — traumatic things happen to you, but your genes influence how you and your body react to these things. Endometriosis development, according to Dr. Koller, is explained similarly. This is part of what makes it so difficult to diagnose early and to identify risk factors. The potential genetic relationship this study found suggests that trauma might be an endometriosis risk factor for some women, because there could be a gene affecting the development of both conditions.
Dr. Koller and her colleagues cite some possible theories for their results:
- Endometriosis is strongly associated with inflammation, and trauma and chronic stress are known to trigger inflammation in the body, potentially worsening endometriosis symptoms.
- Trauma can sometimes also disrupt hormonal balance, specifically stress-related hormones like cortisol and estrogen levels. PTSD symptoms have been linked with menstrual cycle changes. Estrogen levels can contribute to the development or worsening of endometriosis.
- Trauma may also have long-term effects on how your environment can change the way your genes work (known as epigenetics to geneticists), affecting the development of endometriosis.
What could this mean for endo diagnostics and treatment?
After that genetics overview, let's talk about how researchers might build on these results to eventually improve endometriosis diagnosis, a disease that, according to the World Health Organization, affects around 10% of reproductive age women.
Doctors typically diagnose endometriosis with a laparoscopy, a surgery that involves putting a thin, lighted tube with a video camera into a small cut in your stomach to examine your inner organs. “It is unheard of that diagnosis for such a common disease is done by an invasive surgery, and treatment options are limited and have severe side effects,” Dr. Koller says.
The results of this study point to a future where endometriosis screening programs could include assessment of both genetic susceptibility and trauma history as potential risk factors for developing endometriosis or experiencing more severe symptoms.
Dr. Koller also says this study helps verify a need for trauma-informed care, which she describes as an approach to healthcare that accounts for the potential impacts trauma may have on someone. Gynaecological exams, specifically, which can often involve sensitive areas of the body, can be re-traumatizing for individuals who may have experienced sexual or physical trauma. “It focuses on creating an environment of safety, trust, and empowerment for people who have experienced trauma,” Dr. Koller says.
This might sound like another layer of bad news, but as Dr. Koller's story demonstrates, endometriosis care desperately needs reinvention. Studies like this are paving the way toward a future where women's pain is taken seriously, properly diagnosed, and effectively treated — not dismissed for another 15 years.
Eliza Mattson is a journalism student at Northwestern University and a Rescripted editorial intern. She is primarily interested in health and science writing, but she also studies history and economics. When she’s not writing or studying, you can find her rewatching Speed for the millionth time or baking cookies.