Endometriosis, Irritable Bowel Syndrome, and Eating Disorders – Voices from the Field

Last year, a study in France aimed to investigate the potential correlation between individuals with endometriosis, irritable bowel syndrome, and eating disorders. The study participants were recruited from the CIRENDO cohort, which has been collecting histological data from endometriosis patients aged 18 to 50 years since June 2009. The inclusion criteria for this study comprised cases diagnosed no more than four years ago and willing to participate in the ENDONUT pilot study. A total of 54 individuals consented to take part in the research. Subsequent statistical analyses of these cases revealed a significant association between irritable bowel syndrome, eating disorders, and endometriosis [1]. It is important to note that this finding should be further substantiated through a more extensive study. Nevertheless, it highlights a phenomenon that aligns with nutritional counseling observations: Individuals with chronic pain conditions such as endometriosis and irritable bowel syndrome may be more likely to develop an eating disorder.

Irritable Bowel or Endo-belly: Understanding the Connection

For many individuals grappling with endometriosis, the challenge of managing endo-belly is familiar. Endo-belly is frequently linked to the exclusion diagnosis of irritable bowel syndrome (learn more about irritable bowel syndrome here). The management of abdominal pain and the body’s overall well-being can often be improved by avoiding specific foods and adopting a diet typically regarded as healthy. The connection between these factors and eating disorders may not be immediately apparent.

Orthorexia or also orthorexia nervosa, …

…describes a compulsive healthy eating behavior, which according to the current state of science, however, is not yet recognized as a disease in the ICD coding (International Statistical Classification of Diseases and Related Health Problems). The reasons for such compulsive healthy eating can have different psychological and physiological causes. However, many eat very consciously out of fear of getting a chronic disease or aggravating (already existing) food intolerances [2].

What doesn’t sound so bad at first is often an ordeal for those affected. The joy of eating is lost and the social exclusion, which may have already begun due to a chronic illness, may continue. Other consequences may include malnutrition, weight loss, and even a failure to have a menstrual cycle. Orthorexia is currently regarded more as the preliminary stage of an eating disorder, but it is certainly an important feature for those treating patients, especially against the background of pre-existing chronic illnesses.

It is not uncommon for very strict diets to be followed out of fear of further fuelling the disease – in our case endometriosis. It is clear to those who have already tried to follow such a diet over a longer period of time that these diets usually make things worse rather than better, especially from a psychological point of view. One considers exactly whether one goes to birthdays, because there is certainly nothing, which fits into the Diätplan and encapsulates itself at worst completely from social activities. This can start a downward spiral that often requires therapeutic intervention.

About Nicole

Nicole Heinze is a nutritionist who also holds a position at the Hannover Medical School (MHH). Within this role, she has extensively researched various nutrition-related subjects and authored a book.

You can connect with Nicole on Instagram

Nicole’s book is titled:
“Nutrition and Endometriosis: Connections, Obstacles, and Possibilities”
Published by Diplomica Verlag GmbH in Hamburg in 2018.
ISBN: 978-3-96146-615-3

Endometriosis and the Psyche: Exploring the Impact of Delayed Diagnosis

In irritable bowel syndrome and endometriosis cases, individuals frequently find themselves grappling with their symptoms until an official diagnosis is reached. This often results in substantial reductions in their quality of life, particularly when the diagnosis of endometriosis is delayed for more than five years [3], [4]. Furthermore, the lack of awareness among many nutritionists regarding the complexities of endometriosis and the associated distress amplifies the potential for misinformation among affected individuals in nutrition matters.

Rethinking for a Better Quality of Life

The overwhelming question of: “What is good for me?” combined with a lack of self-confidence in one’s own body can push some affected individuals to extreme measures to regain control, even superficially. The results of this relatively modest study are not surprising; instead, they underscore the urgent need for more reliable information. Such information is crucial, particularly in nutrition, for addressing issues like endo-belly, period pain, and more. Moreover, a reevaluation is needed for nutrition specialists and those dealing with endometriosis. We must shift away from the all-or-nothing approach or the exclusive reliance on medication toward a more personalized, holistic, and body-centric methodology. We should view food as a valuable resource that nourishes and provides our bodies with essential nutrients. In the Western world, we enjoy the privilege of being able to choose foods that are beneficial for our bodies, thereby minimizing the risk of nutritional deficiencies. Yet, paradoxically, we often fall short of supplying our bodies with the necessary nourishment.

Key Takeaways from This Study

The journey to achieving optimal nutrition is a highly individualized one, influenced by a multitude of factors. It alleviates anxiety and establishes a deeper connection with your body. Whether you have received a diagnosis of irritable bowel syndrome through exclusion, are dealing with an eating disorder, or face a condition akin to endometriosis, seeking comprehensive support and addressing your unique challenges holistically is paramount. Remember, you have only one body, with all its intricacies and minor and significant difficulties. Take the time to comprehend it truly; this is the foundation for self-care and reconciliation with yourself. It should be abundantly clear that assembling the best possible team to support you in this journey is not just advisable but something you unquestionably deserve.

Prioritize your well-being and nurture a harmonious relationship with yourself!

The Endo-App allows you to record your daily well-being.


  1. Aupetit A, Grigioni S, Roman H, Coëffier M, Bréant A, Hennetier C, Achamrah N. Association between Endometriosis, Irritable Bowel Syndrome and Eating Disorders: ENDONUT Pilot Study. J Clin Med 2022. doi:10.3390/jcm11195773.
  2. Valente M, Syurina EV, Muftugil-Yalcin S, Cesuroglu T. “Keep Yourself Alive”: From Healthy Eating to Progression to Orthorexia Nervosa A Mixed Methods Study among Young Women in the Netherlands. Ecol Food Nutr. 2020;59:578–97. doi:10.1080/03670244.2020.1755279.
  3. Brandes I, Kleine-Budde K, Heinze N, Binder S, Klug C, Schippert C, et al. Cross-sectional study for derivation of a cut-off value for identification of an early versus delayed diagnosis of endometriosis based on analytical and descriptive research methods. BMC Women’s Health. 2022;22:521. doi:10.1186/s12905-022-02044-x.
  4. Sims OT, Gupta J, Missmer SA, Aninye IO. Stigma and Endometriosis: A Brief Overview and Recommendations to Improve Psychosocial Well-Being and Diagnostic Delay. Int J Environ Res Public Health 2021. doi:10.3390/ijerph18158210.

If you have any comments, questions, or concerns regarding endometriosis, eating disorders, or irritable bowel syndrome, please do not hesitate to share them with us. 

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