A large international survey revealed that a significant proportion of patients with endometriosis employ dietary modifications and supplements to manage chronic pain symptoms. The study offered insight into self-management strategies.
In a research letter, published in JAMA Network Open, investigators surveyed 2,388 individuals with confirmed endometriosis diagnoses across multiple continents. The findings showed that 83.8% of respondents had tried one or more dietary modifications, and 58.8% had used supplements to manage symptoms.
"Among the most popular dietary modifications attempted, pain improvement was reported by 666 of 1,252 who reduced alcohol (53.2%), 523 of 1,151 who reduced gluten (45.4%), 512 of 1,132 who reduced dairy (45.2%), and 473 of 1,091 who reduced caffeine (43.4%)," reported researchers from the University of Edinburgh and University College Cork.
Statistical analysis revealed that participants who reported benefit from dietary modifications had significantly lower pain scores compared with those who didn't: median (interquartile range [IQR]) = 4 vs. 5). A similar pattern was observed among supplement users, with those reporting pain improvement showing lower pain scores compared with non-responders (median IQR = 4 vs. 5).
The researchers found that food elimination strategies were more commonly attempted compared with structured diets. For instance, the low–fermentable oligosaccharides, disaccharides, monosaccharides, and polyols diet was reported by only 32.1% of participants. Among supplements, magnesium was the most frequently used; 32.3% of 812 users reported a benefit.
In an exclusive interview with Conexiant, senior study author Philippa T. K. Saunders, PhD, explained that clear patterns emerged in dietary choices. "The majority of respondents that tried a gluten-free diet also tried dairy-free/no soy or no phytoestrogen diets," she said. "Other groups included non–red meat/vegan/pescatarian/vegetarian and no processed food/or processed sugar/organic/wholefood as distinct groups."
Dr. Saunders told Conexiant her team is investigating the physiologic mechanisms that might explain these findings. "As part of wider and ongoing studies we are exploring the relationship between diet, gut microbiome/metabolites, inflammation, and pain symptoms—results will be available later this year."
Regarding the popularity of magnesium supplementation, Dr. Saunders pointed to potential biological pathways specific to endometriosis. "Magnesium levels have been shown to fluctuate throughout the menstrual cycle, potentially in relation to 17beta-estradiol, linking it to the hormone dependence of the disorder."
She also noted that "a study in rats found chronic magnesium supplementation reduced VEGF levels in the uterine tissue. VEGF promotes angiogenesis of endometriosis lesions, providing another potential mechanism for the specific benefits of magnesium in endometriosis, although more studies in patients should be conducted."
Among the 2,388 respondents, 99% identified as female, and the mean age was 35.4 years (range = 16 to 71 years). The racial and ethnic distribution included 88.4% White, 4.3% Asian, and 1.9% Black participants. Geographically, 74.9% resided in Europe and 17.3% in Oceania, with smaller proportions from other continents.
Nearly all respondents (96.9%) reported experiencing pelvic pain, and 91.2% reported frequent abdominal bloating—commonly referred to in the patient community as "endo belly."
The researchers acknowledged study limitations, including "the selection bias of individuals interested in dietary changes and lack of alternative language options and questions regarding the length of diet use and impact on abdominal bloating," noted researchers.
"To our knowledge, this is the largest international survey to date of [patients] with endometriosis who have tried diets and/or supplements to manage pain symptoms," they continued. "These data supported the findings of previous surveys and clinical trials that suggested dietary modifications may help [patients] manage pain associated with endometriosis. However, no single modification was uniquely perceived as beneficial."
Disclosures and author affiliations are available in the full research letter.
