A new study has found that there could be a link between trauma and the development of endometriosis, and the study’s authors say it means we urgently need more trauma-informed care for those who suffer from the debilitating disease.
While it has long been theorised that there is a connection between severe stress and endometriosis, a new study from Yale University shows a correlative link between endometriosis and both childhood maltreatment and traumatic experiences.
Endometriosis is a disease where tissue similar to the lining of the uterus starts to grow in other places in the body. In women and people with female reproductive organs who have the condition, the tissue grows outside the womb, in all sorts of unsuitable places. The tissue – called endometrial-like cells – can grow on various abdominal organs: the bladder, the bowel, the ovaries, the kidneys. It can even grow on the lungs and brain.
The disease affects approximately one in nine Australians with female reproductive organs and has an enormous impact on our quality of life, our work, our social lives. As someone who has lived with endometriosis for at least fourteen years, I can tell you that it is a debilitating and devastating chronic condition for which there is no cure and very few effective treatment options.
I say “at least fourteen years” because, as many of you will know, endometriosis sufferers face huge delays in diagnosis and treatment because the disease has historically been poorly understood – and because the gender pain gap leads to doctors frequently dismissing the severe pain associated with endometriosis as “just a bad period.” This characterisation is inaccurate on many levels, not least because the disease can grow on any organ in the body, so many sufferers do not experience it as a condition linked to their menstrual cycle. Properly understood, endometriosis is a whole body disease.
But the myths around this condition persist, and they mean that sufferers can wait up to a decade for an accurate diagnosis. I, for example, was treated for several different STIs when I ended up in hospital with an endometriosis flare – not one of which I ever actually had.
This brings us to the new study by three researchers associated with the Yale School of Medicine. It confirms the likelihood of a link between trauma and the development of endometriosis – which I’ll explain in detail shortly – and which, most importantly, means it is more important than ever to prioritise trauma-informed care when diagnosing and treating chronic pain that may be endometriosis-related, Dora Koller, the lead author of the study and the recipient of the Marie Curie Individual Fellowship at the University of Barcelona and Yale School of Medicine, told me.
First, the details: the study used a sample of 8276 people with endometriosis and around 250,000 control participants – subjects who have not been diagnosed with the disease. They then asked the participants about any traumatic experiences in their lives.
“Compared to the control group, the patients with endometriosis were more likely to have experienced trauma in their lives,” Koller said.
Equally, patients without endometriosis were more likely to report not having experienced trauma, she said.
The study found that subjects who had experienced emotional, physical or sexual trauma were all more likely to develop endometriosis than their counterparts. The researchers found the strongest correlation between so-called “contact traumas” – trauma involving direct contact with the perpetrator, such as physical or sexual trauma – and the disease.
Solveig Løkhammer, another of the study’s authors as well as a doctor and PhD candidate at the Faculty of Medicine at the University of Bergen, explained that they “identified significant associations between endometriosis and various forms of adversity, including emotional, physical, and sexual abuse.”
“Notably, women with endometriosis were more likely to have experienced physical and sexual trauma, experience death, or a life-threatening diagnosis,” she added.
Koller explained that this is not what we call a “causative” analysis – which would require researchers to follow the same patients over the course of their lives – and so does not prove that trauma causes endometriosis, merely that there is some correlation between the two.
“We don’t know what causes the correlation,” Koller said. “But the link must be caused by something.”
Koller’s theory? That the physical and emotional stress of traumatic events makes it more likely that the body will develop endometriosis.
“We know that chronic stress causes inflammation and that endometriosis is a chronic inflammatory disease,” she explained.
A recent study by the National Institutes of Health found that chronic stress can speed up the growth of endometriosis and can increase the size and severity of endometriosis lesions.
Another part of the study also identified a link between childhood maltreatment and the development of endometriosis, Koller said. A statistical analysis showed that those with endometriosis were more likely to have experienced childhood mistreatment and were more likely to suffer from post-traumatic stress disorder.
“These findings support the hypothesis that early-life stressors could contribute to endometriosis through mechanisms such as chronic inflammation, immune dysregulation, and hormonal imbalances,” Løkhammer explained. She added that the study “provides stronger evidence for trauma as a potential risk factor.”
The study also found, the authors explained to me, that the correlation between trauma and endometriosis exists independently of any genetic risk factors.
“Importantly, we demonstrated that this link is independent of genetic risk for endometriosis, suggesting that exposure to trauma may increase the risk of developing the condition, even in individuals with a low genetic predisposition,” Løkhammer explained.
So, what does this mean for diagnosis and treatment? Koller explained that the potential link between traumatic stress and endometriosis means it is crucial that doctors are trauma-informed when they are dealing with patients with suspected endometriosis.
“The process of investigations can be extremely stressful,” she said. “It involves invasive exams which can lead to patients re-experience traumas, particularly sexual trauma.”
Doctors should be trained on how to make patients feel safe in these environments in order to ensure they are not re-traumatising them and causing them to drop out of the diagnostic process, she said.
“Many patients have had bad experiences with doctors who are not respectful, so they delay investigations and treatment,” Koller said.
“What these results suggest is that the delay in diagnosis could be being exacerbated by doctors not being trauma-informed,” she added.
Løkhammer added that understanding the link between traumatic experiences and endometriosis will be helpful for treatment as well as diagnosis.
“If trauma contributes to the development or severity of the condition, a more holistic approach to care—integrating psychological support, stress management strategies, and trauma-informed healthcare—may improve outcomes,” she said. “These findings highlight the importance of considering a patient’s psychosocial history when diagnosing and managing endometriosis.”
All of this rings painfully true for me. I was diagnosed with endometriosis in 2011, after years of investigations into my severe abdominal pain and other debilitating symptoms. I was also recovering from a violent sexual assault that took place a few years earlier, in 2007 – when I was just fifteen.
I didn’t realise it at the time, but the way I was treated by doctors was hugely retraumatising. Medics, who were convinced I simply kept contracting STIs which landed me in hospital, subjected me to countless cervical exams, internal ultrasounds and other incredibly invasive procedures that are painful and distressing for a sexual assault survivor. They didn’t know I was one, of course, because they didn’t ask – which is exactly the point being made by the authors of this study.
I was ashamed because I could tell the doctors thought I was hypersensitive, or a malingerer, or indeed a bald-faced liar. They couldn’t pinpoint the source of my pain, so they decided it didn’t exist. On top of this, the investigations – all of which, it turned out, were looking for the wrong thing – subjected my traumatised body to more pain, which of course made my symptoms even worse.
This meant that for months and months, I was put through humiliating procedures that worsened my symptoms and crushed my spirit. I remember so vividly lying in hospital having decided to give up on finding an answer when my now long-term endometriosis surgeon came into the room and told me he thought he knew what was causing my pain. I had never heard the word “endometriosis” before, but I told him I didn’t want to investigate it. It would require more surgery to make a formal diagnosis, he said, and I was exhausted. I just wanted it to be over.
That surgeon convinced me to undergo the diagnostic surgery and the treatments available to me since then have gone some way to improving my quality of life – but speaking to these researchers now, fourteen years later, I can see how close I was to becoming one of those patients who fall through the cracks of a re-traumatising system.
I hope that studies like this one mean that endometriosis sufferers who come after me won’t have to tell the same story.