Why Does Having Endometriosis Or PCOS Increase Your Chance Of An Eating Disorder?

Content warning: This article discusses disordered eating in a way that some readers may find distressing.
Existing in a cis woman’s body means accepting things you don’t necessarily understand or agree with. Women’s health issues come with a precursor — “we don’t know much about this one,” “there hasn’t been much research into this field, “we’re not sure about why this happens”. These banal platitudes and hollow explanations are heard by women in doctors' rooms across the country, and around the world. 
There’s an air of taboo that surrounds all health diagnoses, but that only exacerbates when it comes to issues affecting the female reproductive system. Though we’ve made strides in destigmatising mental health, not much can be said about psychological illnesses like eating disorders
“The reality is that menstrual health and anything to do with female reproductive infertility-related issues is still considered very taboo in our society,” Dr. Ranjani Utpala, the Clinical Director of The Butterfly Foundation, tells Refinery29 Australia
Eating disorder discourse has famously been shrouded in misinformation and shame. Utpala shares that we exist in a sort of “paradox” — we shirk away from tough conversations about eating disorders, but also “praise and normalise… disordered eating in our diet culture environment”. 
Put the two together and what do you get? An under-researched and rarely talked about metamorphosis of two public health issues affecting thousands of people. The unfortunate truth is that if you suffer from Polycystic Ovary Syndrome (PCOS) or endometriosis, you’re more likely to battle an eating disorder. So, how did we get here? 

The Link Between Polycystic Ovary Syndrome & Eating Disorders

Affecting 15-20% of people with ovaries in their reproductive years (a further 70% of people remain undiagnosed), PCOS is a hormonal condition that affects the reproductive organs responsible for producing estrogen and progesterone. The most common symptoms include irregular periods, abnormal weight gain or fluctuation, heavy bleeding and excess hair growth or hair loss.
In terms of treatment, PCOS sufferers have shared with Butterfly that the management options they are typically offered are around dieting, weight loss and carbohydrate restriction. Because of the hormone imbalance and insulin resistance, typical dieting and exercise regimes do not always ‘work’.
“When you're being told this is what you have to do to lose weight [and] you follow it and nothing happens, you start to be like, ‘well, it works for everyone else’,” model and activist Mahalia Handley tells Refinery29 Australia. This despondency led her to seek more restrictive behaviours. 
“You start to try and find sources of information that can help you get there faster, you may start to limit your food even further [and implement] intense workouts. Nothing was shifting; obviously, it was completely wrong things for my body. It just caused a lot of problems and [was] a huge indicator of what led to my body dysmorphic disorder (BDD).”
She’s far from alone — people with PCOS are 60% more likely to have an eating disorder than people without.
A common thread that links both chronic illness and eating disorders is a loss of control. “The first thing my therapist said to me [was that I] have major control issues,” Handley shares. “I’m definitely just trying to get a hold of something that feels like it's overwhelming and taking [me] over. That's what it feels like when I have triggers that kick me off — it’s like this wave of loss of control [that I’m] desperately trying to get back completely.”

"It's quite common to then fixate on the one aspect of yourself that seems controllable when everything else seems really uncontrollable. But the reality is that these efforts often lead to more loss of control."

Dr. Ranjani Utpala, the Clinical Director of The Butterfly Foundation
Some people turn to disordered eating to try to regain some semblance of control, though its clear that these efforts do more harm than good. “It's really important to acknowledge that it's very common to us as humans to seek the comfort of being in control. The key lies in developing acceptance for uncertainty,” Utpala says.
"Turbulen[ce] and volatil[ity] can lead people to engage in frantic, and at times, even reckless efforts or behaviours in an attempt to regain a sense of control. It's quite common to then fixate on the one aspect of yourself that seems controllable when everything else seems really uncontrollable,” she says. “But the reality is that these efforts often lead to more loss of control, especially when the behaviours become really rigid, inflexible and rule bound.”

The Link Between Endometriosis & Eating Disorder

Endometriosis is a gynaecological condition where tissue similar to the lining of the womb grows in other places. At least one in nine Australian women and people with reproductive organs suffer from endometriosis, experiencing a range of symptoms like pelvic pain, painful periods, bloating, heavy menstrual bleeding, infertility and pain during intercourse.  
It’s not only the physical manifestations of the disease that cause grief and strife; the intangible mental burden people carry because of it is taxing. Defectiveness, conflict and alienation are three of the main overarching self-perceptions that Australians with endometriosis feel, according to a study with 315 women. Participants admitted that their health diagnosis makes them feel “broken and inadequate,” “at war with it” and that their body isn’t theirs. 
Another study found that 45% of endometriosis sufferers experience body image issues and 12% experience eating disorders. “It creates a bit of a perfect storm that leaves people feeling vulnerable in terms of their body image [that] might lead to disordered eating,” Utpala explains.

"A sick body will constantly fail to meet societal standards of beauty."

“I hate my body. It [endomtriosis] has made me feel as if my own body is against me which has left me feeling like it's almost separate from me,” says one young woman with the condition. This body dissatisfaction is intensified by beauty’s impossible standards, where ‘endo belly’ (the anecdotal name given to severe abdominal bloating) and post-surgery side effects only widen the chasm endometriosis sufferers find themselves in.
“A sick body will constantly fail to meet societal standards of beauty. This constant self-judgement may promote more feelings of failure and of the need to escape and thus perpetuates the vicious cycle of body shame and self-criticism,” the study’s researchers say.

How Do You Manage PCOS & Endometriosis Safely?

With this in mind, how can people with PCOS and endometriosis care for their illnesses in a manner that promotes healthy habits, both physically and psychologically? Nutritional, dietary and exercise advice will likely be given by medical practitioners to help manage pain, so being aware of its dangerous links to disordered eating is imperative. 
“I do acknowledge that people with these chronic illnesses may need to change [their] eating patterns or exercise patterns, but really being able to have a conversation about the flexibility of that change rather than being really rigid and bogged down about it [is important],” Utpala recommends. 
She points to instances like worrying about going off the meal plan for a meal or two, changing how you engage with others in social settings that include food or exercise, and food impacting your ability to engage in work or study as early warning signs that these behaviours could spiral into something more controlling. 
The severe and all-encompassing impacts of endometriosis and PCOS are not to be underestimated — but neither are the management options that can cause people to engage in disordered eating. So many chronic illnesses are left undiagnosed, a parallel to the way we’ve normalised diet culture and its insidious tentacles. Left unchecked, its damage is unfathomable. 
If you or anyone you know is struggling with disordered eating, please contact the Butterfly Foundation at 1800 33 4673. Support and information are available 7 days a week. If you or anyone you know is struggling with endometriosis, adenomyosis, PCOS or pelvic pain, please contact QENDO.

More from Diet & Nutrition