Endometriosis: Is Your Doctor Gaslighting You?

You might not have heard of the phrase, ‘gaslighting’ – but you’ve likely experienced it, especially if you suffer with a condition like endometriosis. 

Originally derived from the 1944 film “Gaslight,” this word has found a disconcerting home within women’s healthcare – particularly when it comes to conditions like endometriosis and it’s no wonder when so many women report a consistent dismissal and invalidation of their pain and symptoms of endometriosis when seeking support for issues connected to their hormones. Gaslighting refers, in particular, to a psychological manipulation that seeks to undermine their perception, often leading them to question their own experiences and sanity. And when it comes to women’s health, gaslighting often manifests as the dismissal and invalidation of our experience of symptoms and pain, perpetuating a cycle of suffering and delayed diagnosis and this is all too common with diseases such as endometriosis, adenoymosis and PCOS.

How does this affect women with Endometriosis?

Endometriosis is a chronic condition that affects approximately 10% of women. It is characterized by the growth of tissue that behaves in a similar way to the uterine lining outside the uterus – the lesions inflame and bleed in a cycle, often in line with menstruation. Pain can be consistent or intermittent, depending on the severity and spread of the disease. Despite its prevalence and impact on a woman’s health and wellbeing, diagnosis times average a staggering 7 to 10 years. While a lack of research has contributed to a lack of understanding of endometriosis and its causes, it’s not just the complexity of the disease that is difficult to diagnose, manage and treat. Systemic issues within healthcare systems, including a historical legacy of misogyny can’t be ignored and are still felt by women today.

“I was told, repeatedly, that my symptoms weren’t ‘real’. That it was all in my head, and that I needed therapy instead of medical treatment. It was only when I finally pushed to see an endo specialist that it was confirmed I had Stage III endometriosis, and it had fused one of my ovaries to the wall of my abdomen. My pain was constantly dismissed. How is that okay?” – Allissa, 29

“When I was a teen sick with endo, a gastro told my mom, “She’s a teenager. Girls at this age are always hysterical. She’s playing up the pain for attention, so I suggest taking her home and giving her the attention she’s lacking.” I literally couldn’t keep food down at the time and was passing out with pain during my period.” – Asha, 24

But how has this happened? Throughout history, medicine has been dominated by male perspectives and learning. In 1977, a Food and Drug Administration policy decided that women of ‘childbearing potential’ should be omitted from Phase I and Phase II drug trials as a result of drug-related incidents (in particular, the Thalidomide tragedy). This led to a shortage of data of how drugs affect women, and it wasn’t until 1987 that the NIH published new guidance to include women in studies again – however, this wasn’t law, although scientists were expected to include a rationale. Finally, in 1993, Congress wrote the NIH inclusion policy into Federal law through a section in the NIH Revitalization Act of 1993 (Public Law 103-43) titled Women and Minorities as Subjects in Clinical Research. 

Drug administration aside, studies into women’s health conditions and hormone balance have been woefully slow to materialize, leading to insufficient understanding of conditions that affect biological females. These include Endometriosis, Adenomyosis, PCOS, Menstruation and Menopause – all of which are still hugely misunderstood within medicine, and too often this leads to assumption about women’s experiences, symptoms and pain. Even today, in 2024, women are too often treated as ‘mini men’ by medical professionals and symptoms are frequently and consistently viewed through a biological male lens for diagnosis.

“I can’t tell you how many people I saw in the nine years it took to diagnose my endometriosis. Scan after scan, blood tests, so much pain. They wouldn’t accept my symptoms and when they ruled out issues like appendicitis, they would just say it’s a bad period. I knew that it was more than that!” – Tammy, 32

“Just before I had a scan, my doctor said to me ‘if the images show cancer, that’s a good thing because we know waaaaaayyyy more about that than we do endometriosis!’. Eyeopening, for sure.” Elly, 26

“One of my first symptoms was pain during sex. It really hurt during and after. When I told my doctor, he said ‘are you sure your boyfriend isn’t just on the large side?’  I was so shocked I didn’t know what to say. So inappropriate.” Lauren, 29

Ultimately, this history of exclusion has resulted in present day delays, misdiagnosis and limited understanding of women’s diseases, like endometriosis and adenomyosis. In its place, there’s an apathy presented towards women when we report issues with our doctors, and far too often real pain and symptoms are treated as mental health problems or fatigue due to a lack of knowledge and too often, women’s pain has often been trivialized, attributed to hysteria or psychosomatic origins rather than being taken seriously. This has lead to a pervasive bias that has marginalized women’s health concerns.

The Impact of Endometriosis 

Women with endometriosis often endure years of debilitating pain, heavy menstrual bleeding, gastrointestinal issues, and infertility before receiving a diagnosis – in most cases, the current diagnostic term is up to 10 years. Despite the severity of these symptoms, medical professionals frequently minimize women’s experiences, attributing their pain to ‘normal’ menstrual cramps or psychological factors. This dismissive attitude can have profound consequences, leading to feelings of frustration, isolation, and self-doubt among those affected and leave women in pain and with unmanageable symptoms that interrupt their lives, work and fertility.

“What no one seems to listen to is that I cannot fully function when I have a flare-up. It stops everything, the pain is SO bad, I can’t toilet properly, I feel sick and dizzy with the pain that is so hard to control. People think it’s just a period problem, but it affects my breathing, my weight, even my gums are sore in a flare up. We need doctors to listen to us and our symptoms properly!” – Darlene, 38

“I have endometriosis in my rectum and bowel and during a flare up, I can’t poop. The only thing my doctor says to that is to take a laxative. That’s it. Nothing else, just take a laxative like it’s a bout of constipation.” – Sara, 19

Fortunately, there are shoots of hope with an improvement in funding for research into endometriosis, and this has largely been influenced by a demand from women to be taken seriously and feel empowered to demand better care via social media. Improving understanding at practitioner level is important, but it’s more important than ever that as women, we are able to educate ourselves and find community with those who experience conditions like endometriosis – and of course, this is the foundation of Hormone University. 

3 Quick tips for managing difficult conversations with your doctor

  1. Prepare Ahead of Time: Before the appointment, take some time to prepare by jotting down your symptoms, their severity, and how they are impacting your daily life. Include specific examples of when the pain is most intense, any patterns you’ve noticed, and how it affects your ability to work, study, or engage in regular activities. Having this information organized will help you communicate your concerns more effectively during the appointment.
  2. Be Assertive and Persistent: During the conversation with your doctor, be assertive in expressing your symptoms and concerns. Clearly state that you believe your symptoms may be indicative of endometriosis and that you would like further evaluation and treatment options. Don’t be afraid to speak up if you feel dismissed or invalidated. If necessary, politely but firmly request a referral to a specialist or advocate for additional tests or imaging studies to rule out other potential causes of your symptoms.
  3. Seek Support and Consider a Second Opinion: If you feel that your concerns are still not being addressed despite your best efforts, don’t hesitate to seek support from friends, family, or patient advocacy groups. Sometimes, having someone accompany you to the appointment can provide additional validation and support. If you continue to feel unheard or if your symptoms persist, consider seeking a second opinion from another healthcare provider who may be more knowledgeable or empathetic about endometriosis and its symptoms.

Have you experienced ‘gaslighting’ when speaking to your doctor about endometriosis, or another hormone condition? Come and discuss with our Hormone University Community on Facebook and share your experience.

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