Experiences of health after dietary changes in endometriosis: a qualitative interview study

Abstract

ObjectivesEndometriosis is a chronic disease with no known cure. Persons affected by this disease often use complementary therapies such as dietary changes to reduce their symptoms, and so it is important to investigate whether and how these therapies affect endometriosis symptoms. The aim of this study was to explore how persons with endometriosis experienced their health after dietary changes.DesignSemi-structured qualitative interviews were conducted with 12 persons with endometriosis who had made individual dietary changes aimed at decreasing their endometriosis symptoms. The interviews were recorded and transcribed verbatim, and analysed using thematic analysis.SettingRegion Västra Götaland and the estern part of Central Sweden, Sweden.ParticipantsTwelve persons with endometriosis aged 28 to 44 were recruited from two Swedish endometriosis support forums on the Internet.ResultsParticipants experienced an increase in well-being and a decrease in symptoms following their dietary and lifestyle changes. They also felt that the dietary changes led to increased energy levels and a deeper understanding of how they could affect their health by listening to their body’s reactions. The participants understood that they could influence their symptoms through lifestyle changes. Support from family and friends was important in implementing and sustaining the dietary changes. However, the participants stressed the lack of support from healthcare professionals.ConclusionsThis study contributes to filling the knowledge gap about dietary strategies in endometriosis and lifestyle change as a method of alleviating suffering and increasing well-being. An important finding is that the participants experienced decreased symptoms and increased well-being after adopting an individually-adapted diet. Healthcare professionals should take their patients’ knowledge and experience into consideration, and allow patients to participate in their own care. Further research is necessary to give evidenced-based dietary advices in endometriosis.

Effectiveness of Dietary Interventions in the Treatment of Endometriosis: a Systematic Review

“… - Intensity of headache, cystitis, muscular pain or fibromyalgia, irritable colon, dysmenorrhea, dyspareunia, chronic pelvic pain measured by VAS (0–100) before intervention and after 3 months—17b-estradiol—PGE2- CA-125 Significant reduction of the symptoms and the laboratory parameters in the first group - Difference in VAS score and laboratory parameters not presented; just the number of patients with VAS > 5 before and after the dietary intervention. No clear description of the inclusion-exclusion criteria—no description of the period of recruitment Vennberg Karlsson et al, 2020 [ 51 ] Sweden Qualitative interview study 12 - Individual, voluntary dietary changes Experiences of health after the dietary change reported during the interview Increase in well-being and a decrease in symptoms - Retrospective design—patient recruitment via endometriosis support forums—unclear dietary interventions—no objective measurement of pain symptoms …”

“…Out of the nine human studies, two were randomized controlled trials [43,44], two prospective controlled studies [45,46], two prospective [47,48], and two retrospective [49,50] uncontrolled before-after studies and one qualitative study [51]. The follow-up period of studies ranged from 4 weeks to 12 months.…”

“…Interventions comprised of supplementation of vitamin D [43]; supplementation of vitamins A, C, and E [46]; supplem e n t a t i o n o f o m e g a -3 / 6 ; q u e r c e t i n; v i t B 3 ; 5methyltetrahydrofolate calcium salt, turmeric, and parthenium [45]; Mediterranean diet [48]; low-FODMAP diet [49]; low nickel diet [47]; gluten-free diet [50]; and individual diet changes [51]. The detailed characteristics of the human studies and the risk of bias assessment are presented in Tables 1, 2, and 3.…”

Living with endometriosis: a phenomenological study

“…In this study, authors observed that most participants noted an impact from endometriosis-related fatigue on daily activities, social relationship, mood and emotion and working activities. In another study (Vennberg Karlsson et al, 2020 ), conducted on 12 persons with endometriosis, authors, through a semi-structured interview, analysed the experiences of health after dietary changes and observed that participants experienced an increase in well-being and a decrease in symptoms following their dietary and lifestyle changes. Differently, another study (Hållstam et al, 2018 ) analysed the women’s experience of painful endometriosis, observing that living with severe painful endometriosis signified a struggle for coherence.…”

“…However, although these studies were focalized to analyse the lived experiences of women with endometriosis, these studies analyzed only specific aspects of endometriosis such as fatigue (DiBenedetti et al, 2020 ), dietary changes (Vennberg Karlsson et al, 2020 ) or pain (Hållstam et al, 2018 ), while in our study, following the phenomenological methodology, we did not limit to analyse only one specific aspect, but the lived experiences in general. Knowing the lived experiences of women suffered by endometriosis, it is crucial to understand the physical and psychological implications that endometriosis could have on their lives, and consequently, give information to implement tailored intervention.…”