Do you think it might be Premenstrual Dysphoric Disorder? My experience with a PMDD diagnosis and how I came to learn what it was.
Disclaimer: I am sharing my personal experience. I am not a medical professional and this blog post should not serve as advice. If you see yourself in my journey please connect with your medical professional.
Premenstrual Dysphoric Disorder, or PMDD, is anything but simple. It has perhaps been the most challenging part of the last decade of my life. 10 years. 10 years of piecing it together.
But there is light at the end of the tunnel.
With the complexity of PMDD I have decided to share my experience in parts. If you haven’t already, take a minute to read What in the Hell is PMDD.
What is Premenstrual Dysphoric Disorder?
Premenstrual Dysphoric Disorder more commonly referred to as PMDD is a hormone-based mood disorder where symptoms become present during the premenstrual, or luteal phase, of a person’s cycle. Those symptoms which often has a dramatic impact on a person’s life subside within a few days of when menstruation begins.
This means that PMDD is cyclical; a person will experience symptoms each and every month during the luteal phase of their cycle.
Although PMDD is directly relate to a person’s menstrual cycle it is not caused by a hormone imbalance. Rather the symptoms are caused by a negative reaction in the brain to the natural rise and fall of estrogen and progesterone of the menstrual cycle.
For me, a blood test on day 3 and day 21 of my cycle confirmed that my hormone levels were within a normal range which confirmed the negative reaction to the rise and fall of my hormones during my luteal phase.
PMS vs. PMDD
From my experience, when I started to open up about what I was going through I heard time and time again “me too!”. It can be disheartening trying to explain how you’re feeling. So, let’s look at the differences.
While some of the symptoms of PMS are shared with PMDD it is the severity and way those symptoms impact a person’s life that differs dramatically. PMS symptoms are also more easily managed where PMDD can require significant support like medication.
PMS is very common, impacting about 80% of people who menstruate; PMDD impacts about 5.5% and can range from mild to severe.
Lastly, PMS is not classified as a mental illness whereas PMDD is a mood disorder where cyclical mood symptoms occur month to month.
While often used interchangeably, the symptoms, diagnosis, and treatment are vastly different.
What Causes PMDD?
I can’t tell you how many times I wondered what caused this to happen to me. If you’re feeling that way, I get it and I hope this blog post will help you to a better place.
I won’t dive too much into scientific terms, but I’ll share what I know (see the references below to dive in deeper)
The truth is cause is unknown, but researchers agree that PMDD is a biological phenomenon. For an unknown reason people with PMDD are particularly sensitive to the normal hormonal changes that occur naturally.
What are the 11 Symptoms of PMDD?
There are 11 symptoms that are used in a PMDD diagnosis. Those symptoms are:
- Mood/Emotional Changes – mood swings, feeling sad or tearful, increased sensitivity to rejection
- Irritability, anger, or increased interpersonal conflict
- Depressed mood, feelings of hopelessness, feeling worthless or guilty
- Anxiety, tension, or feelings of being keyed up or on edge
- Decreased interest in usual activities – work, school, friends, hobbies
- Difficulty concentrating, focusing, or thinking; brain fog
- Tiredness or low-energy
- Changes in appetite, food cravings, overeating, or binge eating
- Hypersomnia or insomnia
- Feeling overwhelmed or out of control
- Physical symptoms – breast tenderness or swelling, joint or muscle pain, bloating or weight gain
The first four symptoms are referred to as the Core Symptoms and at least one of those symptoms must be present for a PMDD diagnosis.
How is a PMDD Diagnosis reached?
A PMDD diagnosis is challenging and time consuming because the only way is by tracking symptoms. There is no test to diagnose PMDD. This means someone experiencing symptoms needs to notice a shift in their mood during their cycle and begin monitoring it for a minimum of two months.
As mentioned above, at least one of the core symptoms that impact mood needs to be present.
In Part One you can read in detail about when my journey began. In my late 20’s after my daughter was born I really began to notice the correlation between my cycle and my mood.
It was then that I reached out to my doctor and began the journey to my PMDD diagnosis.
Since there is no test to diagnose PMDD the first step is to begin diligently tracking your symptoms daily.
If you are a paper and pen person The International Association For Premenstrual Disorders (IAPMD) has a printable tracker you can download,
I preferred to use an app. I chose to use the Clue app to track my symptoms. There is also an app dedicated to tracking PMDD symptoms called Me v PMDD you can download.
After my second pregnancy when I noticed the symptoms occurring again I tracked each and every symptom daily for the better part of a year. While it’s not necessary to track for that long I wanted to ensure I had a good grasp on what I was experiencing.
Is there a Test for a PMDD Diagnosis?
While there is no test to diagnose PMDD there are tests to rule out underlying issues like a hormone imbalance or another mental illness. For me, blood tests ruled out a hormone imbalance and speaking with a psychologist consistently and a psychiatrist helped me rule out other mental illnesses like bipolar disorder.
By tracking my symptoms diligently, I was able to have a record to share with my doctors and also notice the cyclical onset of my symptoms within the luteal phase of my cycle month after month.
Even now, so that I can best advocate for myself, I continue to track my symptoms. This allows me to understand my symptoms better and learn how to thrive with a mental illness.
Once I began to track my symptoms, I noticed a lot of trends that better helped to explain to my doctors my experience but also to better predict what each month would look like for me.
Here is what I experience personally:
- Physically, the first symptom I notice month after month is swelling in my breasts.
- In the 10 days prior to my period I require a lot more sleep
- While I require more sleep, I also have difficulty sleeping and experience increased heat and vivid dreams
- I have trouble concentrating and get overwhelmed very easily
- The most difficult symptoms for me are that I become extremely withdrawn, very irritable, and am quick to anger
- I notice my self esteem plummets and I feel worthless
- I’m often weepy and feel very sensitive
Because of these symptoms my relationships have suffered, particularly with my husband. It wasn’t until I learned about my symptoms that I was able to share with him what happens so he could better understand and support me.
It is SO important for me to note that people experiencing symptoms of PMDD feel completely out of control. Even when I knew I was feeling irritable and quick to anger I could not stop the intensity of my feelings. People with PMDD, like me, often say they feel like a different person.
What you can do is learn to manage your symptoms and advocate for yourself. In part three I’ll breakdown different treatment options for PMDD.
Where Do I Begin?
If you see yourself in my journey, begin tracking your symptoms. It may see tedious to track each and every day but the more you can learn and see trends the more helpful it will be for a PMDD diagnosis.
Next, talk to your doctor. I work closely with my family doctor, a naturopath, and a psychologist. I have also worked with a psychiatrist. Again, the more information you can share about your symptoms the better you can advocate for your care.
Lastly, but perhaps most importantly, be kind to yourself. PMDD can happen to anyone who menstruates, and it is an immensely challenging mental illness. Remember, there is light at the end of the tunnel.
This is my personal story and should not be considered advice. It is important to learn about your own experience with individualized support from professionals who know you and your health and who can support you.