Menstrual pain is a monthly experience women are resigned to endure, but for millions, that pain is significant. Dysmenorrhea, the medical term for painful menstrual cramps, is often not diagnosed, according to a new real-world evidence study published in the Journal of Medical Internet Research (JMIR). The peer-reviewed paper was based on testimony collected by SubjectWell, the patient experience platform driving predictable clinical trial recruitment and patient retention.
“Millions of women live with significant menstrual pain but remain unseen by the healthcare system. This work shows that digital, patient-first outreach can meet people where they are, listen at scale, and invite them into research, ultimately expanding equity and accelerating evidence generation in women’s health,” said Fred Martin, CEO of SubjectWell.
The Findings of the Clinical Trial
The study recruited participants from Germany, Austria, and Poland through “targeted Google and Facebook outreach.” Of the surveyed respondents, 94.6% met the symptom criteria for dysmenorrhea, supporting that direct-to-patient strategies are essential to finding under-recognized patients.
“We set out to understand how direct-to-patient communication could improve access for those experiencing menstrual pain,” said Matthias Roos, Director of Scientific Affairs at SubjectWell.
The results of the trial support the data-based method SubjectWell uses to recruit patients for clinical trials. The trial was successful in finding women who hadn’t been diagnosed or weren’t seeing a doctor, and revealed where diagnosis gaps are occurring.
Additionally, the study provided important information that helped researchers get a clearer picture of how dysmenorrhea affects the lives of women daily.
Key Results of the Study
Among the key findings was the discovery that women with dysmenorrhea symptoms are rarely diagnosed. Only 4.6% of women in the study had a formal diagnosis, even though 88.5% of the participants in Germany and Austria reported having pain at or above 6/10. Women in Poland reported higher levels of pain.
Another finding was that 90.3% of the women in the study hadn’t sought care for their dysmenorrhea, weren’t sure of their diagnosis, didn’t feel their symptoms were properly recognized by medical providers, or didn’t understand that what they were experiencing was pathological.
Among the women who were diagnosed, 77.3% were determined to have PMS instead of dysmenorrhea. Of those women with PMS symptoms, 8.6% reported being diagnosed with PMS. This is nearly double the dysmenorrhea diagnosis rate, indicating that PMS recognition is comparatively higher.
The study reveals the under-recognition of dysmenorrhea in traditional medical settings.
“The data clearly show digital strategies can connect with the right patients quickly and respectfully, laying the groundwork for more inclusive women’s health research,” said Roos.
