THE TREATMENT JOURNEY

For individuals living with premenstrual disorders (PMDs) like PMDD (Premenstrual Dysphoric Disorder) and PME (Premenstrual Exacerbation), the path to effective care is rarely straightforward. Despite experiencing severe, cyclical symptoms that disrupt daily life, many face years of misdiagnoses, dismissal, or being told it's "just PMS." Treatment often involves a cycle of medications, hormonal options, therapy, and lifestyle changes, with few lasting results. Even first-line treatments like SSRIs are only fully effective for about 60% of patients.

⏳ A Long Road with Few Answers

On average, individuals with PMDD or PME spend 12 years seeking answers. Many try 5 to 7 different treatments along the way—ranging from psychiatric medications to birth control, supplements, and various therapies. Despite these efforts, over 75% report cycling through multiple options before finding even partial relief. The trial-and-error nature of care leaves many feeling like they're navigating a broken system without a map.

📌 Source: IAPMD. Community Insights on Diagnostic Delays.

💔 The Emotional Toll

This exhausting journey takes more than a physical toll—it wears people down emotionally. Many experience medical burnout, self-doubt, and a deep sense of hopelessness, especially when symptoms are minimized by providers. It’s a stark reminder that we must do better. PMDD and PME deserve timely diagnosis, informed providers, and access to effective, compassionate care.

📈 Diagnosis & Awareness

5.5% of people who menstruate are estimated to be affected by PMDD — that’s over 115 million individuals globally.

Despite its prevalence, over 90% of people with PMDD report experiencing medical gaslighting or dismissal from providers.

50%+ of individuals with PMDD were misdiagnosed at some point — most commonly with bipolar disorder or major depressive disorder.

📌 Source: IAPMD Global Survey (2018), U.S. National Library of Medicine

🧬 Treatment Challenges

Selective serotonin reuptake inhibitors (SSRIs) are the first-line treatment, but only about 60% of patients respond fully.

Hormonal treatments (like GnRH agonists or surgical menopause) are often only pursued after years of failed treatments.

In IAPMD’s surgical outcomes data:

Over 80% of respondents who underwent hysterectomy and oophorectomy for PMDD reported life-changing symptom relief.

However, this step is often considered a last resort, and access can be limited by a lack of provider knowledge or systemic barriers.

📌 Source: IAPMD Surgical Outcomes Registry

🔺 Self-Harm & Suicidialty

PMDD is associated with severe mental health risks, particularly during the luteal phase (the week before menstruation), when symptoms peak. Research and community-reported data reveal a troubling prevalence of self-harm, suicidal ideation, and suicide attempts:

🔺 34% of people with PMDD have attempted suicide at least once.¹


🔺 70%+ report experiencing suicidal thoughts or ideation during symptomatic times.¹


🔺 50%+ report engaging in self-harming behaviors (e.g., cutting, hitting, burning) to cope.¹


🔺 People with PMDD are 2x more likely to attempt suicide than those without it.²


🔺 15% to 30% of individuals with PMDD have attempted suicide at some point.³


🔺 A significant percentage report non-suicidal self-injury (NSSI) during the luteal phase—estimates range from 40% to 50% in some studies.⁴

📌 Sources: 1. IAPMD. Mental Health & PMDD Community Survey Data.

2. Opatowski, M., Valdimarsdóttir, U. A., Oberg, A. S., Bertone-Johnson, E. R., & Lu, D. (2024). Mortality risk among women with premenstrual disorders in Sweden. JAMA Network Open, 7(5), e2413394.e.

3. Osborn TL, Eisenlohr-Moul TA, et al. (2020–2021). Studies on suicidality in PMDD.

4. Eisenlohr-Moul TA, et al. (2017). Hormone sensitivity and self-injury in PMDD. Biological Psychiatry.

💰 Economic & Personal Impact

PMDD leads to a significant economic burden, including:

  1. - 40% more likely to take sick leave

  2. - 27% more likely to be unemployed

  3. - Missed workdays

  4. - Lost productivity

  5. - Unnecessary or incorrect treatments

  6. - Mental health crisis care

A large portion of people with PMDD report:

  1. - 22% more likely to get divorced

  2. - Strained relationships

  3. - Career disruption

  4. - Educational challenges

  5. - Financial stress due to ongoing healthcare needs

📌 Sources:

Westermark, V., Yang, Y., Bertone-Johnson, E., Bränn, E., Opatowski, M., Pedersen, N., et al. (2024). Association between severe premenstrual disorders and change of romantic relationship: A prospective cohort of 15,606 women in Sweden. Journal of Affective Disorders, 364, 1.32-8.

Halvorsen, U., Yang, Y., Hysaj, E., Nevriana, A., Hägg, S., Valdimarsdóttir, U. A., et al. (2024). Premenstrual disorders and risk of sick leave and unemployment: A prospective cohort study of 15,857 women in Sweden. medRxiv.

IAPMD. Barriers to Care & Economic Impact.

Halbreich, U., et al. (2003). The prevalence, impairment, impact, and burden of premenstrual dysphoric disorder (PMDD). Psychoneuroendocrinology, 28 Suppl 3:1–23.

Lustyk, M.K.B., et al. (2004). Psychological and occupational impact of premenstrual symptoms in working women. Women's Health Issues, 14(5), 201–206.