Introduction

In order to best serve the needs of the PMDD/PME community and to demonstrate the effects of premenstrual disorders on the day-to-day lives of sufferers, we have created a survey to collect data from patients all over the globe to inform our ongoing plans to help this community, including grant writing and program development and aiding future research.

To accomplish this goal, we are seeking first-hand experiences from sufferers like you. By sharing your personal experience with Premenstrual Dysphoric Disorder (PMDD) and/or Premenstrual Exacerbation (PME) of underlying disorders, we can tailor resources and services to improve patient outcomes for sufferers around the world.

Help us help you!

This survey will take approximately 30 minutes - 1 hour depending on how many sections are relevant to your experience. We appreciate your time in gaining such a large amount of information - this will help us see patterns/trends amongst sufferers experiences. 

Questions aim to cover many areas of life, diagnosis, and treatment.

All of those with lived experience of PMDD or PME symptoms (including those who are post-oophorectomy with or without hysterectomy) are invited to share their experiences. We value each person’s experience, regardless of whether you have been formally diagnosed or believe you may qualify for a diagnosis (not sure if you qualify for PMDD or PME? Take the IAPMD Self-Screen).

We especially want to hear from those with PMDD or PME symptoms who are traditionally underrepresented in medical and community planning including racial and ethnic minorities, transgender and gender-nonconforming individuals, and sexual minorities.

You will be asked a variety of questions about your reproductive history. Here are a few examples:

• How old were you when you first started your period?
• What has your experience been with hormones you’ve taken?
• Please describe any complications you’ve had with pregnancy.
• Are you currently experiencing any symptoms of menopause?

Of course, we will ask many questions about your premenstrual symptoms, including some of the more difficult symptoms to talk about, such as interpersonal conflicts, heavy periods, missing work, and suicidal thoughts. We'll also ask about stressful experiences you might have had in the past, such as abuse, trauma, or pregnancy loss/hospitalization.

Confidentiality

While all answers are confidential, you do not have to answer any question that you do not want to answer (you can just scroll to 'next' to skip). Any identifying information will be removed and the anonymous information will be shared with other parties for the purpose of research. You will not be asked to give your name. Quotes may be used but will remain anonymous.

Before starting this survey, it is important that you understand that some of the questions are very personal. Remember that these questions are optional and you can skip any question or section you feel uncomfortable responding to.

Additional Resources


Free, international, one-on-one PMDD/PME support | Email, Call, Text/Chat » IAPMD.org/Peer-Support

Free, 24/7 crisis support in the US and Canada:
Crisis Text Line | Text 'Home' to 741-741
Suicide Prevention Lifeline | 1-800-273-8255

International Crisis Centres: IASP.info/resources/Crisis-Centres

If you have any questions or concerns, please contact us at info@iapmd.org

This survey is the result of a collaboration between:

IAPMD - International Association for Premenstrual Disorders
Vicious Cycle: Making PMDD Visible (Awareness project)
Me v PMDD - PMDD symptom and treatment tracking app

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