Endometriosis is More than Just Managing Pain: One Woman Explains
In this blog, Deanna Flynn Wallis, Ambassador for Endometriosis Australia, shares advice around navigating body image and endometriosis.
Living with endometriosis isn’t just about managing pain—for some people, it can influence other areas of life, from how you feel in your body to your relationship with food, exercise, and self-worth. For me, the unpredictable bloating, chronic pain, and constant dismissal from doctors created a cycle of frustration, shame, and an overwhelming need to regain control. That struggle led me down the difficult path of disordered eating and body image issues—something I now know can be common for others with endometriosis. In this blog, I share my personal journey, shed light on how managing the symptoms of endometriosis can lead to food-related concerns, distress, or an eating disorder. I also want to share with you ways to support yourself if this is something you experience, focusing on how to treat yourself with kindness and self-compassion – You’re not alone in this.
How My Endometriosis Impacted My Relationship with Food, Exercise, and My Body
Endometriosis has significantly shaped my relationship with my body, food, and exercise. When I was in senior school and yet to receive a diagnosis, one of my primary symptoms was severe bloating, often making me look six months pregnant. This led to relentless bullying and cruel rumors, marking the beginning of a difficult relationship with my body and how I viewed it. I became hyper-aware of my appearance, trying to change my looks—including going platinum blonde—just to fit in.
At 19 years old, I underwent my first laparoscopy and was officially diagnosed with endometriosis. However, I had no idea they pumped gas into the body during this procedure, and the post-surgery bloating sent me into a downward spiral. This was the tipping point that led to my battle with anorexia, engaging in severely unhealthy behaviors that nearly cost me my life.
The Link Between Endometriosis, Food-Related Concerns, and How the Body is Viewed
- Persistent Pain and the Loss of Control
Endometriosis-related symptoms can include persistent pain, fatigue, and unpredictable symptoms. This can leave some people feeling powerless over their bodies and the unpredictability of the physical symptoms, leaving food as one of the few things that feels within their control. When we become focused on controlling food, this can lead to restrictive eating, binge eating, or food avoidance. Controlling our intake as coping mechanism can seem helpful in the short-term but can lead to more distress and difficulties in the longer term.
- Bloating and Body Image Distress
The infamous “endo belly”—severe bloating that can make someone look pregnant—can lead to distress, body dissatisfaction and body shame. The sudden and unpredictable changes in appearance (surgery scars, stretch marks, increase in weight) can trigger body shame and disordered eating behaviors as people attempt to “fix” their bodies.
- Food-Related Pain and Fear of Eating
Many individuals with endometriosis experience digestive issues, nausea, and pain after eating, which for some people may lead to Avoidant/Restrictive Food Intake Disorder (ARFID) or orthorexia. The fear of painful flare-ups results in rigid food control and anxiety around meals.
- Medical Gaslighting and Internalised Shame
Many people with endometriosis are repeatedly dismissed by doctors who suggest that weight loss or hormonal treatments are the solution. The constant invalidation of symptoms fosters feelings of self-blame, shame, and a difficult relationship with food and body image.
- Emotional Toll and Mental Health Struggles
For some people with endometriosis, they may experience symptoms of anxiety, depressed mood, low self-worth, or an impaired relationship with their body. These symptoms may be a consequence of experiencing persistent pain, difficulty maintaining roles that are important to the person, or feelings of invalidation.
Breaking the Stigma Around Endometriosis and Eating Disorders
- The Toll of Invalidation and Dismissal
For many people, diagnosis offers a pathway to treatment options and a sense of validation and control. When our experiences are dismissed or doubted, it can have a flow on effect where we also start to minimise our needs or doubt our experiences. If you have ever heard the following statements, it’s important to remember that your pain and endometriosis-related experiences are valid and should be taken seriously:
- “It’s just normal period pain.”
- “You’re exaggerating.”
- “It’s all in your head.”
- “You just need to lose weight/have a baby/go on the pill.”
- Endometriosis Is More Than a “Bad Period”
Endometriosis is a chronic, inflammatory disease that affects multiple organs, including the bladder, bowel, and even the lungs. The belief that it’s just period pain delays diagnoses and treatment.
- Surgery Is Not a Cure
While excision surgery is currently considered to be an effective treatment, it is not a cure. Endometriosis is a chronic condition that requires ongoing management, yet many are led to believe surgery will “fix” everything.
- The Stigma Around Eating Disorders and Negative Body Image
There is a damaging misconception that people with chronic illnesses who struggle with food are simply “picky eaters” or “dramatic.” In reality, restrictive eating, disordered eating, and body image struggles are common due to the pain, bloating, and weight fluctuations caused by endometriosis and its treatments.
Advice for Those Struggling with Endometriosis and Body Dissatisfaction
- Validate Your Experience
Your pain is real, and your struggles with food and body image are valid. You are not failing. Your body is not the enemy.
- Reframe How You See Your Body
Instead of focusing on how your body looks, shift your mindset to what it allows you to do—whether that’s resting, working, creating, or simply surviving through tough days.
- Set Boundaries Around Conversations About Weight and Appearance
It’s okay to set boundaries with friends, family, and colleagues about weight-related discussions. Some ways to respond:
🚫 “I’d rather not talk about weight or diets—it’s not helpful for me.”
🚫 “I’d appreciate it if we could focus on how I’m feeling rather than how I look.”
🚫 “Please be mindful of how we talk about food and bodies—I’m working on being kind to mine.”
🚫 “It’s great that your friend found that helpful for managing their endometriosis. There is a lot of individual variation in endometriosis symptoms, and I don’t think that will be effective for me”.
Encouraging others to use kind words and focus on your strength and resilience helps create a more supportive environment.
- Nourish Without Fear
Food is fuel, not the enemy. If fear of food is a struggle, consider working with a dietitian who understands both endometriosis and disordered eating to help rebuild trust with food. Repairing the relationship that you have with food is important.
- Release the Pressure to “Look Healthy”
With an invisible illness, there’s pressure to look a certain way. Some people lose weight, others gain weight due to hormones, and then there is the unpredictable “endo belly.” Your worth is not in your size, shape, appearance—it’s who you are as a person.
- Seek Support and Safe Spaces
You don’t have to go through this alone. Finding understanding friends, support groups, or therapists can be life-changing. This is why I’m incredibly proud to be an Endometriosis Australia ambassador and grateful for our collaboration with The Butterfly Foundation. Together, we’re breaking the silence around the intersection of chronic illness and eating disorders, providing resources and a sense of community.
- Be Kind to Yourself
On the hard days, remind yourself:
💛 You are more than your illness.
💛 You deserve nourishment and rest.
💛 Your worth is not measured by your appearance.
💛 Healing is not linear, and that’s okay.
Setting boundaries, prioritizing self-compassion, and seeking support can help you reclaim your relationship with your body and food. You are strong, even when you don’t feel like it. You are deserving of love, care, and support—especially from yourself.
Author
Deanna Flynn Wallis, Ambassador for Endometriosis Australia.
Endometriosis Australia is the national peak body charity dedicated to raising awareness, educating the public and funding research for endometriosis.
