From ‘endo warriors’ on social media to celebs opening up about their struggles, awareness of endometriosis is rising. Nutritionist Ro Huntriss looks into the condition, and how your diet can play a part.

Endometriosis affects 1 in 10 women and undetermined numbers of transgender, gender fluid and non-binary people in the UK and can cause debilitating pain, very heavy periods and infertility.

Due to the broad symptoms and limited awareness of the condition, it takes 6-7 years on average to be diagnosed [1]. At present we still don’t know for sure what causes it and there is no cure, yet, with treatment to manage symptoms including lifestyle changes, hormone therapy and surgery [2].

Thankfully, with the rise of social media and after years of medical dismissal, people living with endometriosis are finally starting to feel heard. In 2012, the online and face-to-face support group “Endo Warriors” was founded and inspired the use of the term Endo Warrior to reflect the unique battle with the disease [3]. You’ll often see this term hashtagged on social media from those living with or supporting the condition. 

Online, endometriosis patients have found a place where they felt listened to and empowered to share their stories and ask for more from their healthcare professionals. The noise has also been picked up by celebrities [4]. Emma Roberts, Gabrielle Union and recently Leah Williamson, the Lionesses football captain, are just a few of the public figures who have opened up about their struggles with endo [6].

What is endometriosis?

Endometriosis is a chronic inflammatory condition where tissue resembling the lining of the uterus (endometrium) grows outside of the uterus, throughout the body [2]. Most commonly it can be found attached to the ovaries, fallopian tubes, bladder, bowel, and pelvic floor and less commonly on the liver, diaphragm, lungs, brain and central nervous system [1]. 

Endometriosis may result in the formation of cysts (endometriomas), scar tissue (adhesions) and inflammation, as well as causing a wide range of debilitating physical, physiological and psychological symptoms [1]. While some endometriosis patients might not experience any noticeable symptoms, others can be heavily affected.

What are the symptoms of endometriosis?

The symptoms associated with endometriosis can vary and tend to be worse around menstruation [2]. They include:

• painful periods 
• chronic pelvic pain
• pain during and/or after sexual intercourse 
• painful bowel movements 
• painful urination
• fatigue
• depression or anxiety
• abdominal bloating and nausea
• infertility and difficulty getting pregnant
• decreased quality of life

How does endometriosis differ from PCOS?

PCOS, another condition that can seriously affect your period and increase risk of infertility, is often mixed up with endometriosis.

A 2015 study concluded that women with PCOS are more likely to also have endometriosis. Although PCOS and endometriosis are two different conditions linked to excess of different hormones, it is believed they can appear at the same time due to the excess androgens and insulin which in turn cause excess oestradiol (a type of oestrogen) [8]. 

Could diet have a negative effect on endometriosis? 

Certain lifestyle and dietary choices have been associated with increased risk of developing endometriosis and worsening its symptoms. A characteristic of endometriosis is a chronic state of inflammation [9]. Although further research is required until these foods and lifestyle factors can be fully linked to the worsening of the condition, we know that a diet high in saturated and trans fats, red and processed meat, caffeine and alcohol may increase inflammation and therefore exacerbate pain [10][11][12]. 

Pesticides are also considered to facilitate the development of endometriosis, so it’s important to wash fruits and vegetables thoroughly before consumption [13]. 

How could diet help endometriosis? 

To fight inflammation and pain, the evidence points towards an anti-inflammatory style diet. Research suggests that various nutrition strategies can reduce the risk of endometriosis onset, and improve the management of the condition. 

• A high intake of green vegetables and fresh fruit [16] has been associated with a reduced risk of developing endometriosis.
• The consumption of legumes has been associated with a reduction of inflammatory markers and adhesions [17].
• Women consuming 3 portions of dairy per day are less likely to be diagnosed than those consuming 2 portions or less [18].
• Foods containing omega - 3 fatty acids such as salmon, walnuts, chia, and flax seeds - may reduce the risk of developing endometriosis and reduce pain [19].
• Soy creates controversy because it contains phytoestrogens which causes fear in some people with endometriosis due to endometriosis being an oestrogen-dominant condition. However, there is not currently enough evidence to show that dietary soy has an effect either way on endometriosis, but it is suggested that including some soy in your diet should not cause a problem and may even help [19].
• Vitamin D deficiency is considered a potential risk factor for endometriosis so you should ensure that levels are within target range [19].
• Magnesium may have an antispasmodic effect by relaxing muscles and therefore reducing pelvic pain [19].

In addition, the low-FODMAP diet appears effective in endometriosis patients experiencing gastrointestinal symptoms such as  gas, bloating, stomach pain, diarrhoea, and constipation [20]. FODMAP stands for “fermentable oligo-, di-, monosaccharides and polyols” and are carbohydrates that are not easily broken down by the gut and become hard for some people to digest causing the gut symptoms mentioned above.

The low-FODMAP diet supports endometriosis patients by eliminating high-FODMAP foods which can relieve symptoms. However, this diet is complex and is best performed under the supervision of a Registered Dietitian.

Similarly, some evidence concluded that a gluten-free diet may be helpful for some endometriosis patients to reduce symptoms of pain [21]. However, foods containing gluten often contain fructans (a FODMAP), which leaves a question as to whether it is the reduction of gluten or fructans which offer the benefit.  

There is also research to suggest that some dietary supplements may support the management of endometriosis such as:

• Omega-3 and alpha-lipoic supplements - may reduce pain symptoms.
• Vitamin C and E supplements - could potentially reduce menstrual cramps severity, pelvic pain and pain during sex [22]. 
• Curcumin, NAC (N-Acetyl-Cysteine), ECGC (epigallocatechin-3-gallate) - may reduce the size of endometriomas and scar tissue [22]. 

Key takeaways

• Endometriosis is a chronic inflammatory condition where tissue resembling the lining of the uterus grows outside of it and throughout the body. 
• With the rise of social media and celebrities sharing their stories, “Endo Warriors”  are starting to feel heard and empowered to speak up. 
• Endometriosis can cause debilitating pain, very heavy periods, and infertility. It can take 6-7 years to diagnose and there is no cure. 
• Diet and lifestyle have the potential to help or hinder endometriosis. People living with endometriosis should seek support from their doctor or dietitian to understand how their diet can best support the management of their endometriosis.

References

1. Ellis, K., Munro, D. and Clarke, J. (2022) Endometriosis is undervalued: A call to action, Frontiers in Global Women’s Health, 3. Available at: https://www.frontiersin.org/articles/10.3389/fgwh.2022.902371/full (Accessed: 20 January 2023).
2. WHO (2021) Endometriosis. Available at: https://www.who.int/news-room/fact-sheets/detail/endometriosis (Accessed: 20 January 2023).
3. Endo Warriors Support (2012) Support for Women with Endometriosis. Available at: https://endowarriorssupport.com (Accessed: 20 January 2023)
4. Women’s Health (2021) 9 Celebrities Who Have Opened Up About Dealing with Endometriosis. Available at: https://www.womenshealthmag.com/uk/health/female-health/g38120123/celebrities-endometriosis/ (Accessed: 20 January 2023).
5. Women’s Health (2022) Leah Williamson, captain of the Lionesses, is our January cover star. Available at: https://www.womenshealthmag.com/uk/health/a42306525/leah-williamson-january-2023/ (Accessed: 20 January 2023).
6. Dinsdale, N.L. and Crespi, B.J.(2021) Endometriosis and polycystic ovary syndrome are diametric disorders. Evol Appl. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8288001/ (Accessed: 20 January 2023).
7. NHS (2022) Endometriosis. Available at: https://www.nhs.uk/conditions/endometriosis/ (Accessed: 20 January 2023).
8. Hart, R. and Doherty, A.D. (2015) The Potential Implications of a PCOS Diagnosis on a Woman’s Long-Term Health Using Data Linkage, The Journal of Clinical Endocrinology & Metabolism, 100 (3), pp. 911–919. Available at: https://academic.oup.com/jcem/article/100/3/911/2839432?login=false (Accessed: 20 January 2023).
9. Saguyod, S.J.U. et al. (2018) Diet and endometriosis-revisiting the linkages to inflammation. Journal of Endometriosis and Pelvic Pain Disorders, 10(2). pp.51-58. Available at: https://journals.sagepub.com/doi/10.1177/2284026518769022 (Accessed: 21 January 2023).
10. Missmer, S.A, et al. (2010) A prospective study of dietary fat consumption and endometriosis risk. Hum Reprod. 25(6), pp. 1528-35. Available at: https://pubmed.ncbi.nlm.nih.gov/20332166/ (Accessed: 21 January 2023).
11. Yamamoto, A. et al. (2018). A prospective cohort study of meat and fish consumption and endometriosis risk. Obstet Gynecol, 219(2), pp. 178.e1-178.e10. Available at: https://pubmed.ncbi.nlm.nih.gov/29870739/ (Accessed: 21 January 2023).
12. Parazzini, F. et al. (2013) A meta-analysis on alcohol consumption and risk of endometriosis. Obstet Gynecol, 209(2), pp. 106.e1-10. Available at: https://pubmed.ncbi.nlm.nih.gov/23707678/ (Accessed: 21 January 2023).
13. Jing Li, A. et al. (2020) Association of urinary metabolites of organophosphate and pyrethroid insecticides, and phenoxy herbicides with endometriosis. Environment International, 136. Available at: https://www.sciencedirect.com/science/article/pii/S0160412019341947?via%3Dihub#b0185 (Accessed: 21 January 2023).
14. Parazzini, F. et al. (2004) Selected food intake and risk of endometriosis. Hum Reprod. 19(8), pp 1755-1759. Available at: https://pubmed.ncbi.nlm.nih.gov/15254009/ (Accessed: 21 January 2023).
15. Arab, A. et al. (2022) Food groups and nutrients consumption and risk of endometriosis: a systematic review and meta-analysis of observational studies. Nutr J., 21(1), p. 58. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9503255/ (Accessed: 21 January 2023).
16. Qi, X. et al. (2021) Relationship Between Dairy Products Intake and Risk of Endometriosis: A Systematic Review and Dose-Response Meta-Analysis. Front Nutr. Available at: https://pubmed.ncbi.nlm.nih.gov/34368211/ (Accessed: 21 January 2023).
17. Helbig, M. et al. (2021) Does Nutrition Affect Endometriosis? Geburtshilfe Frauenheilkd, 81(2), pp. 191-199 Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7870287/ (Accessed: 21 January 2023).
18. Moore, J.S. et al. (2017) Endometriosis in patients with irritable bowel syndrome: Specific symptomatic and demographic profile, and response to the low FODMAP diet. Obstet Gynaecol, 57(2), pp. 201-205. Avalable at: https://pubmed.ncbi.nlm.nih.gov/28303579/ (Accessed: 21 January 2023).
19. Marziali, M. et al. (2012) Gluten-free diet: a new strategy for management of painful endometriosis related symptoms? Minerva Chir, 67(6), pp. 499-504. Available at: https://pubmed.ncbi.nlm.nih.gov/23334113/ (Accessed: 21 January 2023).
20. Yalçın Bahat, P. et al. (2022) Dietary supplements for treatment of endometriosis: A review. Acta Biomed. 93(1). Available at:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8972862/ (Accessed: 21 January 2023).