Just found out about PMDD? Want to know more?
Many people find out about PMDD after living with the symptoms, undiagnosed, for long periods of time. While putting a name to what you have been going through can be a relief, it can also be hard to know exactly where to start. So, we have put together this simple guide to you get started on finding all the information you need to help you on your journey with PMDD. It can be a real learning curve, but you are not alone and we are here to help!
What is PMDD?
We recommend listening to this 6 minute long ‘bitesize’ podcast on PMDD which covers a lot of the basics:
Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder with symptoms arising during the premenstrual, or luteal phase of the menstrual cycle and lasting until the onset of menstrual flow. It affects an estimated 5.5% of women & AFAB individuals of reproductive age. While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance. PMDD is a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone.
Symptoms of PMDD
Feelings of sadness or despair or even thoughts of suicide
Feelings of tension or anxiety
Panic attacks, mood swings, or frequent crying
Lasting irritability or anger that affects other people
Lack of interest in daily activities and relationships
Trouble thinking or focusing
Tiredness or low-energy
Food cravings or binge eating
Trouble sleeping
Feeling out of control
Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain
These symptoms occur during the week or two before menstruation and go away within a few days after bleeding begins. A diagnosis of PMDD requires the presence of at least five of these symptoms. Read more here:
What causes PMDD?
PMDD is a suspected hormone sensitivity disorder in the brain. Studies suggest that, among women and AFAB individuals with PMDD, brain circuits involved in emotional response may activate differently compared to those without PMDD. This could be due to atypical brain reactions to luteal phase changes in allopregnanolone (ALLO; a main progesterone metabolite) in those with PMDD versus those without. While increased ALLO usually makes people feel calmer, ALLO has an abnormal, opposite effect in PMDD— it causes agitation, anxiety, and negative mood changes. It is possible that those with PMDD have developed a tolerance to the calming effect and emotional regulation of ALLO.
In 2017, researchers at the National Institutes of Health (NIH) found that those with PMDD are more sensitive to changes in the sex hormones estrogen and progesterone, and they found that this might be due to a molecular mechanism in their genes. Researchers compared white blood cells in women with PMDD and those without, and confirmed that women with PMDD had differences in the genes that process sex hormones.
There are many ongoing areas of research into the causes of PMDD; ultimately, it may be that PMDD results from a combination of these factors.
What is the difference between PMS & PMDD?
PMS is a collection of emotional and/or physical symptoms including bloating, breast tenderness, increased hunger, weepiness, and irritability. Someone with PMS will have fewer, and usually less severe, premenstrual symptoms than someone with PMDD. PMS is more common than PMDD, and as many as 80% of women and AFAB individuals experience some form of PMS in the second half of their menstrual cycle - with either mild, moderate, or severe symptoms.
PMS may interfere with a woman's quality of life, interpersonal relationships, or ability to attend work or school, according to the American College of Obstetricians and Gynecologists. However, PMS symptoms are generally more easily managed than PMDD and do not require prescription medication including antidepressants. PMS is also not classified as a mental illness in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5), while PMDD is.
PMDD is characterized by a cluster of mood symptoms that recur in the luteal phase of most menstrual cycles over the course of a year. An estimated 5.5% of women and AFAB individuals meet the criteria for PMDD. PMDD may be mild, moderate, or severe. While PMS and PMDD are often used interchangeably in mainstream media and popular culture, the etiology, diagnosis, and treatment widely differ. It is important to use the correct terminology when discussing PMDD so that awareness, education, and treatment may be correctly achieved.
How is PMDD diagnosed?
PMDD can not be diagnosed via blood, hormone, or saliva test. These tests can, however, rule out any underlying disorders including hormone imbalance or thyroid issues which can mimic PMDD symptoms. The only way to currently test for PMDD is by tracking symptoms for a span of two more menstrual cycles.
You must track your symptoms on a daily basis, alongside your menstrual cycle. We offer a free printable tracker and a free tracking app for your smartphone.
If you are having issues gaining a diagnosis then you can read our helpful ‘Steps to diagnosis’ page here which offers handy advice to troubleshoot some common problems!
What are the treatment options for PMDD?
There is no single option that works for all of those living with PMDD. You will want to work with your healthcare and support team to find the best treatment option for you. Many people find it is the combination of several treatment options that help the most.
Click below to read all about recommended options for you:
Where can I find a doctor who can help treat PMDD?
Finding a doctor to treat PMDD can be challenging. PMDD has only recently been formally recognized as an “official” diagnosis in the medical and mental health communities. Because of this, many healthcare providers have not received training in PMDD - they may not be aware that the condition exist, and they often don’t know where to begin in treating them - we are working to improve this!
Based on patient reviews and recommendations, we have compiled a growing directory of health care professionals to aid in your search. Don’t forget that if you find an amazing doctor locally to add them to the directory and give them a review so others know what to expect!
Where can I find support?
There is a thriving, caring online PMDD community - IAPMD run 7 closed Facebook support groups and more recently, video support groups. If you prefer to avoid social media and/or be anonymous then you can check out the IAPMD PMDD forum on the INSPIRE platform. With people coming together from all around the world, you will never be alone and there is always a friendly ear to listen and understand. On Twitter and Instagram you can search #PMDDpeeps to connect with others.
PME or PMDD?
PMDD is a condition where symptoms are only present in the luteal phase. Ovulation triggers the fluctuations (and therefore the symptoms!) and when those fluctuations settle (around the time of your period) the symptoms also cease. PMDD follows a very ‘On/Off’ pattern each month. If you are finding that you are having symptoms all month around but you are seeing that they worsen in the lead up to your period, you may have Premenstrual Exacerbation (PME). This is the exacerbation of an existing condition which ‘flares’ or worsens in the premenstrual phase.
Use our handy self-screen tool here to help you determine if you may have PMDD or PME. You can, of course, have both, and if you are having issues differentiating we would recommend seeing an experienced provider who can help make a differential diagnosis.
FAQ
As well as our website which is packed full of information, we have collated a whole knowledge base of commonly asked questions about PMDD, PME, and IAPMD. By adding in a keyword into the search bar, you can look for answers to all your questions. This is a constantly growing resource - if your question isn’t answered then you can submit it for our Clinical Advisory Board to answer!
I have questions - is there someone I can talk to?
Yes! Here at IAPMD we have a team of trained volunteer peer support providers who are there to listen, share, signpost and help. They have lived experience of living with PMDD/PME (or both!) and so you never have to explain what PMDD is! This international team is ‘there to care’ - if you have questions, reach out!
Please note: This free service is provided by volunteers and in busy periods, the service may be limited. For crisis intervention please reach out to your nearest crisis support service. You can find details for crisis support here.