JMIR Publications

ABSTRACT

Background:

Menstrual complaints are widespread but often stigmatized. The most common is dysmenorrhea (DYS), or menstrual cramps, which manifests as mild to severe pain during menstruation and affects >40% of women throughout their reproductive lifespan. DYS is often endured silently or self-medicated. Consequently, a vast majority of DYS patients might not be found in medical practices, necessitating direct-to-patient communication to reach a broad and diverse patient population effectively.

Objective:

Primarily, to reveal the diagnosis status, pain levels, comorbidities, and eligibility/willingness to participate in clinical trials of women affected by DYS and menstrual discomfort, based on a broad patient population not necessarily reached in medical practices. Secondly, to test the effectiveness of direct-to-patient communication via online campaigns (Google Ads, Facebook) in engaging patients affected by DYS or conditions that might benefit from direct-to-patient communication.

Methods:

Women experiencing menstrual pain were reached through a targeted online campaign using Google Ads and Facebook in Germany, Austria, and Poland, and were surveyed from April to June 2023. This study is observational.

Results:

We surveyed 3,546 women, 95% of whom reported symptoms consistent with DYS, highlighting the high specificity of the Google and Facebook campaigns. Approximately 80% of these women had experienced pain since adolescence, suggesting primary DYS. Over 90% of affected women in Germany and Austria reported pain levels of 6 or higher on a scale of 0 to 10, with even higher pain levels observed in Poland. Elevated pain levels were correlated with DYS symptoms but not with PMS symptoms. Notably, out of the 3,230 women reporting symptoms consistent with DYS, only 5% reported to be diagnosed with the condition, regardless of elevated pain levels. This can be attributed to two factors: (1) ~90% of affected women did not seek medical advice, were uncertain about their diagnosis, or their symptoms were not recognized as pathological. (2) Among the 10% diagnosed, only 47% were diagnosed with DYS. The other 53% were diagnosed with PMS but not DYS despite regularly experiencing DYS symptoms. The situation was better for PMS: Among the diagnosed women, 77% were diagnosed with PMS, in line with the 80% PMS prevalence in the survey population. Overall, about 9% of women with PMS symptoms reported having been diagnosed with PMS — nearly double the diagnosis rate reported for DYS.

Conclusions:

The data reveal a significant diagnostic gap for DYS, but not necessarily for PMS. Most DYS-affected women do not seek medical advice, and up to half of DYS diagnosis might be missed. Thus, most affected women might not be found in medical settings (doctor's offices, clinics) despite experiencing significant pain. Online campaigns effectively reach individuals with menstrual complaints, including those who are undiagnosed or not seeking medical care.