37-year-old Georgie Wileman just won a BAFTA. Her documentary film, This is Endometriosis, depicts the reality of living with the full-body inflammatory condition, which affects one in ten people assigned female at birth and involves tissue similar to the uterine lining growing on other areas of the body, where it causes symptoms such as inflammation, scarring and severe chronic pain.
It’s a condition deeply connected to trauma in more ways than one. To begin with, research involving over one million women shows that adversity in childhood increases risk of endometriosis after menstruation begins, thanks in large part to the prolonged, low-grade inflammation that trauma leaves in the body. Given that endometriosis is an inflammatory condition, trauma has the power to worsen symptoms and potentially even trigger onset.
Then, there’s the pain of endometriosis itself. In the last month, I’ve spoken to over a dozen women who have shared stories of nights spent curled on bathroom floors, trapped between bouts of violent vomiting and diarrhoea. Of months of rectal bleeding which led to anaemia and cancer scares. Of body image destroyed by extreme bloating, which triggered disordered eating. And of chronic pain so severe that it’s rendered them wheelchair-bound for months on end.
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Of course, there’s also the trauma of what endometriosis can do to one’s body and relationships. Hormonal dysfunction, structural scarring and inflammation can result in painful intercourse and low libido, before you even mention the potential for infertility, which often completely alters the course of women’s lives, regularly forcing impossible decisions, shame and isolation.
Created by Holland & Barrett and The Endometriosis Foundation, ‘Endo Pants’ is a campaign designed to visually represent some of the painful symptoms of endometriosis
(Image credit: Holland & Barrett / Sarah Juliet Costumes)
Georgie has lived all of this and more. And yet, our conversation focuses on the one area of this condition you wouldn’t expect to find trauma: that is, in the healthcare system that is designed to diagnose and treat endometriosis. And yet, amongst all of the women I’ve interviewed, medical trauma was their most shared experience. Whether it was a GP telling them their pain was imagined, an endoscopist performing an invasive procedure without proper consent, or referral letters arriving twelve years after consultation, every woman I spoke to had been left with emotional scars caused by medical dismissal, insensitivity, gaslighting, and neglect.
It begs the question: how, in an age where medical diagnostic and treatment pathways are so sophisticated, have we found ourselves in a situation where a condition as common as asthma, and which causes pain akin to childbirth, takes an average of nine years and four months to diagnose – and in that time, is so frequently mismanaged and misunderstood?
Ahead, with the help of psychologists, reproductive health researchers and the women who live these experiences every day, I explore the connection between medical trauma and endometriosis: from its origins, to its impacts and what needs to happen to make real change.
If you’re here looking for further information on endometriosis, make sure to read our guide to spotting the most common symptoms of the condition, alongside the important facts one writer wished she’d known sooner. We’ve also got expert advice from Dr Hazel Wallace on how to advocate for yourself in medical settings, whether you’re struggling with endometriosis or another reproductive health condition, such as PCOS.
What is medical trauma?
To understand how medical trauma has become so common amongst women with endometriosis, we first need to make sense of what it actually is.
Simply speaking, medical trauma is an emotional and physical response to painful, difficult, uncomfortable or frightening health experiences. It can be triggered by a single, isolated event, such as a traumatic surgery, but can also be caused by repeated or prolonged exposure to negative experiences which overwhelm the nervous system.
Importantly, however, trauma is not actually about the event(s) themselves but about how the body adapts in response. “Trauma is a dysregulated nervous system trying to protect itself,” says Dr Farideh Banafshei, counselling psychologist and founder of Harley & Chelsea private therapy. “That’s why two people can go through the same experience, and one may develop trauma while the other does not.”
The way our nervous system adapts to a potential trauma often hinges on the way other people treat us in the moment and aftermath of the event, which is why the care we receive from medical professionals is so instrumental in the development of post traumatic symptoms. “Often the point the brain gets stuck is not the traumatic health event happening, but the moments of not being believed or helped,” confirms Dr Sula Windgassen, health psychologist and author of It’s All In Your Body. “These moments communicate that I will not be helped when in trouble, and that is a fundamental threat to survival.”
How does medical trauma impact women with endometriosis?
Medical trauma doesn’t just impact women psychologically and emotionally – it’s physical, too. Research shows that trauma dysregulates the immune system, leading to chronic inflammation in the body, which can worsen endometriosis.
Practically, medical trauma impinges on women’s ability to seek treatment by causing them to fear, lose trust and at times, disengage with the healthcare system entirely. “Medical trauma can manifest in severe anxiety before medical appointments, intrusive memories or flashbacks related to previous procedures, or even nightmares about medical settings,” says Dr Banafshei. “Some people feel numb or dissociated when they enter hospitals or clinics, while others begin to avoid healthcare altogether, including both medical and mental health support.”
Georgie knows this all too well. “Now I’ll only ever go to A&E if paramedics tell me I could die,” she says, explaining that the trauma of reentering a medical setting makes her pain worse. “Even medical sounds, such as the beeping of lorries reversing, can trigger me. I have to wear headphones and sunglasses in hospitals to dull the experience and try to avoid panic attacks.”
25-year-old Tia has a similar reaction. “I repeatedly have panic attacks going into appointments and procedures because of the way my pain has been disbelieved over the years. I don’t want to seek mental health support because I’m worried it will lead to more dismissal.”
Deciding to avoid treatment due to trauma has long-term impacts on women’s health outcomes. “Beyond the physical pain, patients often experience depression, strained intimate relationships, disruptions to their education or careers, and in some cases impaired fertility,” says Dr Charis Chambers, OBGYN & Chief Medical Officer at Clue.
Medical trauma also disrupts women’s sense of self. “There are so many times where I ask myself, ‘Am I making this up?’” says Georgie, who explains that it wasn’t until the fourth surgery that she began to believe her pain was real.
Georgie’s loss of trust in her body was the product of countless moments of gaslighting by medical professionals. One psychologist even wrote in a pre-surgery report that she was using her wheelchair as an excuse to lean into the pain. “After the operation, my surgeon looked me in the eye and apologised because I had 39 lesions across my body,” she tells me. “It took him looking inside to believe my pain.”
This is an all too common experience. In fact, 83% of women diagnosed with endometriosis have been told by a doctor they were ‘making a fuss about nothing’ according to data from Endometriosis UK. This, combined with frequent misdiagnosis and long treatment delays, “means many women go through failed treatment after failed treatment, leaving them questioning their own experiences and wondering if relief will ever come,” says Dr Chambers.
Why is medical trauma such a widespread issue amongst women with endometriosis?
It’s almost unimaginable that these failings could be happening on such a large scale across the UK -especially as, for the most part, doctors are not causing deliberate harm. Making sense of it requires us to look at a combination of factors, which span the gendered history, politics and economics of pain.
1. A lack of medical knowledge and understanding
Endometriosis is often reduced to a gynaecological condition, rather than the full-body systemic condition that it is. That gap in research, education and knowledge means that symptoms affecting other parts of the body are often missed, leading to unnecessary invasive procedures.
That was true for 30-year-old Lucy, who was subjected to a flexible sigmoidoscopy to check for colorectal cancer, which left her with trauma. “I nearly passed out from the shock and pain,” she says. As a private gynaecologist pointed out to her later, the procedure was not only performed insensitively, it was entirely unnecessary, and could have been avoided had doctors understood how endometriosis can affect women’s bowels. “He actually put his head in his hands in despair at what was missed,” she recalls.
Dr Chambers confirms Lucy’s experience. “Endometriosis is complex, but medical training often dedicates limited time to it, leaving many clinicians without the depth of knowledge needed to recognise and manage it effectively,” she explains.
2. A cultural normalisation of menstrual pain
There’s also a cultural bias impacting the way women’s pain is treated, with research showing that women are consistently prescribed less effective pain relief than men.
Period pain, in particular, is normalised across society. “Painful periods, pelvic pain, and fatigue being routinely dismissed as ‘normal’ by families, friends, and healthcare professionals,” says Dr Helen O’Neill, associate professor in Reproductive and Molecular genetics and co-founder of Hertility.
“This leaves an unfair burden on patients to prove their suffering,” adds Dr Chambers. “This, layered onto chronic pain, can be exhausting and over the years, can be deeply traumatising.”
3. A shortage of medical resources
Currently, 3 million women are waiting on NHS gynaecology lists – the longest across any speciality in UK healthcare. “This creates “a diagnostic bottleneck where women are trapped in a cycle of GP appointments without resolution,” says Deirdre O’Neill, Co-founder and Chief Commercial and Legal Officer at Hertility.
How can we reduce medical trauma amongst women with endometriosis?
1. Compulsory menstrual education in schools
“Many women don’t know what endometriosis is until years after symptoms begin, because we are never taught that severe period pain is not normal,” says Dr O’Neill.
By equipping young girls with knowledge about the early symptoms of endometriosis, which include but are not limited to fatigue, painful periods, painful bowel movements and pain during sex, we put them in a better position to advocate for themselves in medical settings and maintain internal trust throughout the diagnostic and treatment process.
2. Improved diagnostic measures and training for healthcare professionals
Until now, surgery has been required to confirm an endometriosis diagnosis, which has led to years of untreated pain, uncertainty and potential organ damage for many women. But new guidance from the American College of Obstetricians and Gynaecologists, published just last month, indicates that this shouldn’t be necessary to diagnose and commence treatment.
“The shift away from surgical gatekeeping could shorten diagnostic delays and would mean patients no longer need surgery to ‘prove’ their pain is real before accessing care,” says Dr Chambers.
4 tips for women navigating diagnosis and treatment for endometriosis:
Of course, while healthcare reforms are needed to prevent future harm to women with endometriosis, care is also needed for those who are already living with medical trauma.
If that’s you, or someone you know, the specialists have some advice.
1. Validate your trauma
It sounds trivial, but recognising and validating your experiences is an important step to healing. “If your experiences in the medical system have felt frightening, violating, or dismissive, it is important to acknowledge that,” says Dr Banafshei. “Part of healing involves untangling your real experience from a system that may have failed you.”
Bringing someone with you to appointments can also help here. “A trusted person can provide emotional support and help you feel less alone during the process,” Dr Banafshei says.
2. Don’t be afraid to seek mental health support
Seeking help from a therapist, especially one who is trauma-informed, can be a helpful step. “Over time, addressing the trauma can help separate the suffering caused by the illness from the suffering created by the medical system around it,” says Dr Banafshei.
A word of advice. When you seek therapy, it’s important that your therapist knows whether the trauma is still ongoing or if it’s in the past. “If trauma is still occurring, stabilising the nervous system and providing supportive care comes first,” explains Dr Banafshei.
In contrast, if trauma is entirely connected to an event in the past, then techniques such as EMDR can help you to process the experience. “EMDR can work with both the memory itself and the bodily sensations connected to that memory, which is why it can be particularly effective for processing emotions such as shame,” says Dr Banafshei.
3. Track and document your symptoms
Documenting your symptoms can help you feel more prepared to re-enter medical environments, says Eve Lepage, Reproductive Health Specialist at Clue. “Instead of relying on memory alone, symptom tracking allows you to point to patterns and trends in your own data, which can become a form of self-advocacy.”
LePage suggests logging the following information about your cycle. “These help to create a longitudinal health record that can reveal patterns that might otherwise be overlooked,” she says.
Bleeding patterns
Symptoms
- Headaches
- Cramps
- Bloating
- Mood changes
Lifestyle factors
- Sleep
- Exercise
- Sexual activity
4. Seek second opinions
Losing trust in the healthcare system often leads us to turn to social media in search of answers. But whilst online spaces such as Reddit’s r/endometriosis community can provide validation and connection to other women, they aren’t a replacement for medical care, which is why it’s important not to give up on medical diagnosis, as frightening and off-putting it can be.
“If you don’t feel safe or respected with a healthcare provider, you have the right to seek someone else,” says Dr Banafshei, who says that regaining choice is an important step to healing medical trauma. “Feeling empowered in how you approach your care rebuilds autonomy and internal trust because your entire health isn’t in someone else’s hands,” she says.
If you, or someone you know has been affected by medical trauma during their diagnosis and treatment of endometriosis, the following services can provide resources, advice and support.
For private healthcare, Hertility offers at-home diagnostic testing and endometriosis-specific referral for ultrasounds and specialist consultation, which can reduce diagnostic timeframes.