Background
Dysmenorrhea is characterized by abdominal pain occurring just before and/or during menstruation [
1]. Its prevalence among women of reproductive age ranges from 16 to 91% [
2]. Dysmenorrhea is classified as primary if it occurs in the absence of underlying pathological findings or secondary if it is related to other conditions such as endometriosis, fibroids, or pelvic inflammatory diseases [
1,
3,
4]. Without a pelvic examination, ultrasound, and/or diagnostic laparoscopy, primary and secondary dysmenorrhea cannot be fully differentiated [
4], and the two types share similar symptomatic treatment approaches [
5].
Dysmenorrhea negatively affects women’s quality of life [
6] and is the leading cause of absence from school and work among women in the reproductive age [
7]. It is also associated with other pain conditions such as migraines, fibromyalgia, and irritable bowel syndrome [
8‐
11]. Women with dysmenorrhea, compared to those without, have been reported to have enhanced pain sensitivity, which may increase their susceptibility to develop other chronic pain conditions later in life [
6,
12,
13]. Scholars suggest that dysmenorrhea may be a fundamental contributing factor to other painful conditions that are more prevalent in women [
9,
14].
Quantitative studies on dysmenorrhea have shown that (1) severe pain is experienced by 2–29% of women with dysmenorrhea [
2], (2) gastrointestinal symptoms are prevalent among women with menstrual pain [
15,
16] and (3) women use pharmacological and nonpharmacological strategies to manage dysmenorrhea [
17,
18]. Relevant qualitative studies have focused primarily on endometriosis [
19‐
21], a source of secondary dysmenorrhea. Women often experience significant delays in the diagnosis of endometriosis from the time of symptom onset [
20]. These studies also suggest that endometriosis-related pain and infertility can negatively affect women’s social, work, and sex life [
20,
21]. Women in these studies, however, were often recruited from specialized clinics and women with dysmenorrhea symptoms without a clinical diagnosis or who were not in treatment were not included. The goal of the one qualitative study on primary and secondary dysmenorrhea was to develop an outcome measure to support labeling claims in pharmaceutical trials [
22].
Research is warranted to address the needs and issues that are important to women with dysmenorrhea to improve their quality of life. The purpose of this study, therefore, was to describe women’s salient thoughts about their experiences of dysmenorrhea. Such information is foundational for the assessment of dysmenorrhea and the development of person-centered interventions to support dysmenorrhea management.
Discussion
This study revealed salient thoughts women have about their dysmenorrhea experiences in the form of six descriptive themes. Limited research has examined women’s experience with dysmenorrhea using qualitative data. By systematically analyzing qualitative data, we newly identified needs and issues that are important from women’s own perspectives. Women’s own perspectives are essential to inform person-centered care for dysmenorrhea. Our study provided new information about the complex, dynamic, and heterogeneous nature of dysmenorrhea. By describing the heterogeneity of the somatology, topography of women’s symptom patterns, the ways in which the symptoms affect their daily lives, their beliefs about contributing factors, and their perceptions about treatment, these findings provide an in-depth understanding of dysmenorrhea as experienced by a broad-based sample of women.
The findings serve as a call for action to improve dysmenorrhea assessment. Abdominal pain intensity is typically the only symptom assessed in dysmenorrhea [
26]. Yet consistent with previous studies [
16,
22], we found that many participants experienced pain at multiple sites and reported a variety of gastrointestinal symptoms. Previous studies have reported that increased prostaglandins and pain sensitization among women with dysmenorrhea are likely to contribute to pain at multiple sites and gastrointestinal symptoms [
3,
11,
27]. Assessment for dysmenorrhea should therefore include the evaluation of pain at different locations (e.g., abdomen, lower back, legs/upper thighs, vaginal area, and head) and query about gastrointestinal symptoms (e.g., nausea, vomiting, diarrhea, and bloating).
Interference of symptoms with daily life has been recognized as a core outcome of pain research and clinical care [
28], but it has not been commonly assessed in dysmenorrhea studies [
29]. Our study along with others focusing on endometriosis [
19,
22] demonstrate that dysmenorrhea symptoms interfere with daily life in a variety of domains (e.g., physical, occupational, recreational, and relational). Such domains are included in interference scales in available instruments such as the Brief Pain Inventory [
30] and the Patient-Reported Outcomes Measurement Information System (PROMIS®) [
31]. Future studies should evaluate the applicability and psychometric properties of these scales on women with dysmenorrhea.
Although cross-sectional epidemiological studies have uncovered population-based correlates of dysmenorrhea such as age and parity [
2,
32,
33], our findings suggest that dysmenorrhea symptoms may fluctuate over time with some women reporting increased rather than decreased symptoms with childbearing, aging, and menopause. The sub-pattern of increased dysmenorrhea symptoms with childbearing, aging, and menopause has rarely been reported in the literature. Longitudinal studies that could explicate sub-patterns of symptom trajectories and allow researchers to identify protective and risk factors for these trajectories and/or the development of chronic pain later in life are needed.
Our findings call for the development of personalized interventions that target the full range of dysmenorrhea symptoms. Clinical guidelines [
34] that address the management of menstrual pain and related gastrointestinal symptoms, and effective pharmacological and nonpharmacological treatments for dysmenorrhea-related gastrointestinal symptoms are needed. Given the complex nature of dysmenorrhea, multimodal approaches that combine pharmacological and complementary approaches may be additively or synergistically beneficial for some women. A personalized decision aid could help women choose from among the array of available treatments. The well-established Ottawa Decision Support Framework [
35] indicates that treatment decisions should cater for individuals’ needs (e.g., needs for pregnancy/contraception), preferences (e.g., desire for natural treatment and desire for menstruation), expectations, goals, previous treatment responses, and treatment risks. Decision aids could improve dysmenorrhea treatment by validating women’s concerns, clarifying their needs and preferences, and prompting shared decision-making with the healthcare provider.
More mechanistic research is needed to understand individual variations in symptom experiences, symptom trajectories, and treatment responsiveness. Despite advances in explicating the role of prostaglandins in the etiology of dysmenorrhea, it is unclear why some women with severe dysmenorrhea symptoms have normal prostaglandin levels and laparoscopic findings [
3]. Uncovering mechanisms underlying this heterogeneity can generate new insights for developing mechanism-specific therapies and tailoring therapies for distinct groups.
The findings of this study have implications for clinical practice. First, healthcare providers should not trivialize dysmenorrhea. Although not life threatening, dysmenorrhea can significantly interfere with the daily lives of some women. Healthcare providers’ indifference toward dysmenorrhea can lead to frustration, delayed diagnosis, and inadequate or ineffective treatment [
19]. A vital step toward effective dysmenorrhea management is to validate women’s experience. For example, when a woman reports dysmenorrhea symptoms, a provider might respond by saying “Menstrual pain is very common, but it can be distressing and might interfere with your well-being. I am here to do my best to relieve your symptoms.” Second, differences between women should be given full consideration. Clinical assessment should include questions about dysmenorrhea severity and progression, concurrent problems (e.g., heavy menstruation), treatment preferences (including desire for menstruation, needs for pregnancy/ contraception, concerns about medications, and attitudes toward non-medications), treatment contraindications, and history of treatment responsiveness thus allowing treatment tailoring. For example, in women with severe dysmenorrhea concurrent with heavy menstruation, the levonorgestrel-releasing intrauterine device or continuous use of oral contraceptives may suit their needs [
34] especially when they are open to the absence of menstruation. For women who do not desire contraception or who prefer non-pharmaceutical approaches, high-intensity transcutaneous electrical nerve stimulation and/or heat may be reasonable options [
5,
34].
These findings should be considered in light of some study limitations. First, given that the responses were anonymous and written in response to an open-ended survey question, we were unable to ask clarifying questions or to validate our conclusions with participants. Second, there was potential recall bias in women’s description of their symptoms. Longitudinal research using standardized symptom measures could explicate symptom patterns across time. Third, there was potential coverage and self-selection bias related to using the Internet survey. Fourth, our broad-based community sample served both as strength and limitation. While the sample allowed us to describe a range of experiences, it did not allow us to make claims about any specific sub-groups of women with dysmenorrhea, such as those who have endometriosis or fibroids. A purposive sample that systematically includes subgroups of women would allow such a comparison.