Can Endometriosis Impact your Relationship with Your Food and Body?
By Nadia Maxwell B.AppSci, M.Diet, APD
Content warning: this article discusses eating disorders. I encourage you to look after your wellbeing and that’s ok if that means reading no further. Eating disorder support can be found via the Butterfly Foundation National Helpline.
As a dietitian with a slight obsession about everything hormonal and menstrual health, I love supporting clients with endometriosis. Alongside this, I do a lot of work in the world of intuitive eating, disordered eating and eating disorder recovery. When I started out in the menstrual health space, I was well aware of the higher levels of disordered eating that people with PCOS face, but little did I expect to see the overlap of endometriosis and disordered eating that kept popping up in my clinic. I had questions; Is this something that only I’m seeing? Is this being spoken about? What about the research?
Endometriosis is a condition that can result in you feeling like your body is out to get you. That even simple bodily functions feel out of control. “What’s my experience of pain going to be like today?” “Will I be bloated?” “Will I have diarrhoea or not go to the bathroom for the next five days?”
Surely that has a profound impact on how you feel about your body.
Then there’s wading through information online about how food can alleviate or worsen symptoms. Although dietary changes can feel overwhelming and restrictive, it’s entirely understandable that it might feel “worth it” for the possibility of reducing pain or digestive discomfort. Not to mention that people with endo aren’t immune to the societal pressures to eat, move their bodies and look a certain way. These pressures are often amplified when you’re struggling with side-effects of hormonal therapies, sexual intimacy, surgical scars or fertility challenges.
As more and more much needed research is being done on endometriosis, it’s great to see a light being shone on how endo impacts a person’s emotional, social and sexual wellbeing. But what about the research on how it impacts a person’s relationship with their food and body?
So off I went to see if what I was hearing firsthand from clients was reflected in the literature.
Let’s start with body image
Perhaps the most impactful research that I found was a 2021 study based in Australia that surveyed 315 women with endometriosis. As a part of the study, the women wrote about how they felt about their body. The researchers summarised it beautifully into three main themes as follows:
1. “It makes me feel broken and inadequate” (Sense of failure);
2. “I feel like I’m in a war with it” (Sense of conflict); and
3. “I feel like my body isn’t mine; it’s out of control” (Sense of alienation). (1)
The women in this study were certainly not alone and these themes were reflected in research in other parts of the world. In a 2017 study based in Italy, researchers conducted open interviews with 74 women with endometriosis. In this study, almost all participants had negative body image. Yes, you read that right: “almost all”! Women that had higher levels of distress described their relationship with their body as a “constant struggle”. How they felt about their body subsequently impacted their choices, for example, wearing clothing to hide a bloated stomach. (2)
Another article from 2021 sought to find clarity on what might explain why some people with endometriosis experience higher levels of distress than others. The study found that more negative body image and higher levels of self-criticism were two likely factors that contributed to higher levels of psychological distress. This was especially true for people with endo who experience more than one chronic condition. They go on to say: “These findings are likely due to their acknowledgement that 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.” (3) This leads to a larger conversation about the ableist roots of diet culture which unfortunately can’t fit into this (already very long) article.
On a more positive note, another 2017 study by Facchin et al. found that “greater self-esteem, body esteem, and emotional self-efficacy were correlated with better psychological outcomes.” They go on to state, “we believe that assessing and enhancing self-esteem and self-efficacy should be considered as important components in the psychological treatment of endometriosis patients.” (4) Similarly, Gellar et al. state “Focusing on improving body image and alleviating self-criticism will likely improve body perception and assist women in coping with chronic illnesses.” (3)
The research confirmed that I certainly wasn’t alone in noticing the struggles clients were facing. Having endometriosis can negatively impact how one feels about their body AND feeling negative about one’s body can increase endometriosis distress. Although more research is needed, seeking support to improve your relationship with your body may support your overall endo management.
What about disordered eating in endometriosis?
I couldn’t find a single thing in the research that points to the overlap of endo and disordered eating. Sadly, I got the sense that this is more due to the lack of research and disregard of disordered eating as a potential adverse effect of dietary change than anything else. In a recent study surveying people with endometriosis on their pain management strategies, dietary change was reported by 44% of people. (5) Interestingly, the only adverse effects listed was gastrointestinal upset, which makes me wonder whether the impact on one’s relationship with food was even considered.
In the absence of literature, I turned to clinical and lived experience for information. Despite the scarcity of writing on the topic, I’m certain that many of you will resonate with what I found.
In a 2020 blog post by Elle Hurley on Endometriosis Foundation of America, she interviewed Dr Jillian Lampert, Ph.D., Chief Strategy Officer for the Emily Program. She states, “Eating disorders are complex, but Dr. Lampert explains that they boil down to the need to exercise some control over our circumstances. When it comes to life with a chronic illness like endometriosis, it can frequently feel like everything is out of your control.” (6)
This is something that I hear reflected over and over in my consult room and I believe that diet culture plays a harmful role in this. Diet culture pushes the narrative that both the physicality and functioning of our bodies are entirely within our control and if they’re not conforming to the societal “ideal” (thin, white, able, pain-free etc), it’s entirely our fault.
Angie Khoudair is a writer who has firsthand experience with endometriosis and an eating disorder. She has generously shared her experience in her writing online. In a 2021 article in Fashion Journal, Angie speaks of the journey of mystery gut symptoms in her teens, to a diagnosis of IBS and an elimination diet to control the symptoms. This eventually led to an intense fear of food and a challenging relationship with her body. Despite seeing many health professionals, it wasn’t until the age of 25 that she finally received a diagnosis of endometriosis. She shared “The years spent searching caused me a lot of grief. I am learning that trusting myself and being okay with who I am is a difficult journey. Endometriosis is still widely misunderstood and there is no known cure. If there was more awareness and better treatment of endometriosis and disordered eating, it may not have taken me so long to begin to accept and love myself.” (7)
Reading Angie’s story, it was reminiscent of a number of people’s stories that I had heard in my clinic. For some, the challenging relationship with food came before the endo diagnosis as a way to manage symptoms, just like Angie. For others, the diagnosis came first and, after reading blogs about “endo-diets” that give no mention of ensuring they’re done in the safest way possible, they find themselves in a spiral of food fear.
Does that mean that dietary strategies should be avoided altogether? Not at all! There’s no doubt that dietary change can be supportive for many people with endometriosis, particularly if digestive symptoms are part of the picture. If dietary change is not your cup of tea, that is a-okay, there are plenty of other endo management strategies available. If, however, you want to make some changes, here are some tips to support you to do so:
1. Make sure to prioritise your relationship with body and food while finding a way of eating that works for you. It can be helpful to seek support from an endo specialised dietitian, nutritionist or naturopath who is eating disorder informed.
2. Go gently. Elimination diets and massive dietary changes aren’t essential. Small changes made one at a time can have just as supportive effects.
3. If a dietary change results in more stress long-term, it’s not worth it!
4. Know that you can change your mind. Once you make a change, there is no failure in changing back or re-routing. We always want to monitor for improvements. If something isn’t working for you after a suitable length of time, no need to keep doing it!
If the content of this article resonates with you, my hope is that this knowledge can help you feel less alone. That your experience is valid and that you’re not “broken”. I hope that it supports you to feel empowered, knowing that there is help out there. Finding a practitioner via trusted organisations can be helpful. Qendo and HAES Australia are two great places to start. If you have any questions or feedback or would like to access one on one support, you can reach me on my website or email: hello@nadiamaxwell.com
References:
1. Mills, J., Shu, C., Misajon, R., & Rush-Privitera, G. (2021, May 19). “My body is out to wreck everything I have”: A qualitative study of how women with endometriosis feel about their bodies. https://doi.org/10.31234/osf.io/awrgx
2. Facchin, F., Saita, E., Barbara, G., Dridi, D., & Vercellini, P. (2018). "Free butterflies will come out of these deep wounds": A grounded theory of how endometriosis affects women's psychological health. Journal of health psychology, 23(4), 538–549. https://doi.org/10.1177/1359105316688952
3. Facchin, F., Barbara, G., Dridi, D., Alberico, D., Buggio, L., Somigliana, E., Saita, E., & Vercellini, P. (2017). Mental health in women with endometriosis: searching for predictors of psychological distress. Human reproduction (Oxford, England), 32(9), 1855–1861. https://doi.org/10.1093/humrep/dex249
4. Geller, S., Levy, S., Ashkeloni, S., Roeh, B., Sbiet, E., & Avitsur, R. (2021). Predictors of Psychological Distress in Women with Endometriosis: The Role of Multimorbidity, Body Image, and Self-Criticism. International journal of environmental research and public health, 18(7), 3453. https://doi.org/10.3390/ijerph18073453
5. Armour, M., Sinclair, J., Chalmers, K. J., & Smith, C. A. (2019). Self-management strategies amongst Australian women with endometriosis: a national online survey. BMC complementary and alternative medicine, 19(1), 17. https://doi.org/10.1186/s12906-019-2431-x
6. Hurley, E. (2020). “The Link Between Eating Disorders and Endometriosis.”
https://www.endofound.org/the-link-between-eating-disorders-and-endometriosis
7. Khoudair, A. (2021) “How Endometriosis Disordered My Eating” https://fashionjournal.com.au/life/endometriosis-eating-disorder/
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