6/24/2019 by Share Your Story

Premenstrual Dysphoric Disorder: It’s Not Just PMS

Danyelle is a student and an advocate for Premenstrual Dysphoric Disorder. Learn what PMDD is (and isn't) and how you can find resources.


MY PMS WAS…DIFFERENT

My journey begins at the age of seventeen. As a person with a menstrual cycle, I expected to experience PMS like anyone else, and I certainly did. What I didn’t expect was the debilitating symptoms that soon followed.

I compared my version of PMS to my friends’ and it was obvious that I was different.

Danyelle Fay

Was I losing my mind? I was beyond desperate to find an answer. It took months before I even realized that what I was experiencing was directly connected to my menstrual cycle. My doctor and I have a great relationship, but it was frustrating that she didn’t make this connection – I did. 

PREMENSTRUAL DYSPHORIC DISORDER

One desperate day about four years ago I googled, “why does my period make me want to kill myself?” I then read the description of a disease I had never heard of, “Premenstrual Dysphoric Disorder”.

Two weeks before the onset of menstrual flow you will experience rage, uncontrollable crying, suicidal thoughts, loneliness, mood swings, panic attacks, binge eating, feeling out of control, and physical symptoms such as breast tenderness, bloating, headaches and joint or muscle pain.” – mind.org.uk


What the Experts Say about Premenstrual Dysphoric Disorder

The Mayo Clinic explains PMDD as:

…a severe, sometimes disabling extension of premenstrual syndrome (PMS). Although regular PMS and PMDD both have physical and emotional symptoms, PMDD causes extreme mood shifts that can disrupt your work and damage your relationships.

In both PMDD and PMS, symptoms usually begin seven to 10 days before your period starts and continue for the first few days that you have your period. Both PMDD and PMS may also cause bloating, breast tenderness, fatigue, and changes in sleep and eating habits. In PMDD, however, at least one of these emotional and behavioral symptoms stands out:

  • Sadness or hopelessness
  • Anxiety or tension
  • Extreme moodiness
  • Marked irritability or anger”

Womenshealth.gov lists the following symptoms, many of which Danyelle experienced:

  • Lasting irritability or anger that may affect other people
  • Feelings of sadness or despair, or even thoughts of suicide
  • Feelings of tension or anxiety
  • Panic attacks
  • Mood swings or crying often
  • 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 cramps, bloating, breast tenderness, headaches, and joint or muscle pain

THE CHALLENGE OF DIAGNOSING

Premenstrual Dysphoric Disorder or PMDD is a cyclical, hormone-based mood disorder. PMDD affects up to 1 in 20 menstruating people of reproductive age, making it more common than people realize (and more upsetting that doctors aren’t familiarizing themselves with it). There is no medical test you can take to give you a diagnosis. One of the only ways to receive a diagnosis is to track both your cycle and your symptoms. I downloaded the app “Me V PMDD” and started to make note of when I felt my worst.

I was both fearful and excited to finally understand what was going on with me. Online it recommends tracking three full months to make sure your symptoms are connected to your cycle so that is exactly what I did. I called my primary care provider and set up an appointment.

SOMETIMES THE PATIENT TEACHES THE DOCTOR

By the time the appointment finally came around I had enough recorded data to prove I was indeed suffering from PMDD. I  remember sitting on the doctor’s table, anticipating telling her my new discovery. I thought this appointment would give me more answers and bring me some type of plan to care for my symptoms. Unfortunately, I was completely wrong. My Doctor listened to me and sympathized but she had no real answers. She told me she wasn’t familiar with the disorder.

With shaky hands, I anxiously pulled out my phone to read her the definition and symptoms. I needed her to understand that my PMS was more than being grouchy. She reviewed my med list and gave me a referral to a Psychiatrist that works in the same building. We decided to do a mouth swab just in case, which is a test that shows what medicines will work best with your DNA.

THE WRONG TREATMENT

Feeling like all hope was lost, and not quite sure where to turn at this point, I then reached out to my gynecologist. As I was waiting for the psychiatric appointment I was able to get squeezed in to see my OBGYN. I was actually experiencing my PMDD symptoms on the day of my visit. This time I was more prepared. I had written down the definition, all the symptoms. I even went a step further and wrote paragraphs of how I personally experience this disorder. Once again, my OBGYN listened the same as my primary care and once again she wasn’t sure what to do. She had at least heard of the disorder but didn’t know what to do as far as treatment.

I ended up being put on birth control which made me three times worse, so I had to be taken off of it after two months.


TREATMENT FOR PREMENSTRUAL DYSPHORIC DISORDER

The Mayo Clinic points out that “Treatment of PMDD is directed at preventing or minimizing symptoms and may include:

  • Antidepressants. Selective serotonin reuptake inhibitors (SSRIs), such as fluoxetine (Prozac, Sarafem, others) and sertraline (Zoloft), may reduce symptoms such as emotional symptoms, fatigue, food cravings and sleep problems. You can reduce symptoms of PMDD by taking SSRIs all month or only in the interval between ovulation and the start of your period.
  • Birth control pills. Taking birth control pills with no pill-free interval or with a shortened pill-free interval may reduce PMS and PMDD symptoms for some women.
  • Nutritional supplements. Consuming 1,200 milligrams of dietary and supplemental calcium daily may possibly reduce symptoms of PMS and PMDD in some women. Vitamin B-6, magnesium and L-tryptophan also may help, but talk with your doctor for advice before taking any supplements.
  • Herbal remedies. Some research suggests that chasteberry (Vitex agnus-castus) may possibly reduce irritability, mood swings, breast tenderness, swelling, cramps and food cravings associated with PMDD, but more research is needed. The Food and Drug Administration doesn’t regulate herbal supplements, so talk with your doctor before trying one.
  • Diet and lifestyle changes. Regular exercise often reduces premenstrual symptoms. Cutting back caffeine, avoiding alcohol and stopping smoking may ease symptoms, too. Getting enough sleep and using relaxation techniques, such as mindfulness, meditation and yoga, also may help. Avoid stressful and emotional triggers, such as arguments over financial issues or relationship problems, whenever possible.

SAVED BY PSYCH

At this point, it was time for the psychiatrist appointment. I wasn’t too hopeful considering how my other appointments went for PMDD. When I sat down, I chose my words carefully, feeling like this was my last shot to be heard – and finally, I was. The test results had come back and I worked with the psychiatrist to pick a medication that is an SNRI (serotonin and norepinephrine uptake inhibitor), I increase my dose during the weeks I experience my symptoms. Different medicines and treatments work differently for other people. For me, this has helped but it is not a cure.

ADVOCATING FOR MYSELF  

Now I am 22 and have been dealing with PMDD for three years. My symptoms are almost as bad as when I made that google search. The difference is I have learned not only how to advocate for myself, but also what coping skills work and which don’t. I am not ashamed of my disorder. It is important to bring awareness to PMDD whenever possible because there are so many people suffering from it and they don’t even know.

If my story sounds anything like yours I strongly advise you do some of your own research and start tracking your cycle.


FINDING HELP AND RESOURCES

The International Association for Premenstrual Disorders (IAPMD) gave Danyelle an award for exceptional advocacy. The mission of the IAPMD is to provide women, trans-men, and non-binary assigned female at birth/AFAB communities with the education, support, resources, and tools necessary to live healthy lives, reduce interpersonal conflict, and eliminate self-harm. They have resources that can help.

There are also mental health resources for women at WomensHealth.gov.


Danyelle Fay is currently a college sophomore. She has done advocacy work for Premenstrual Dysphoric DisorderDanyelle Fay (PMDD) on both her college campus and across social media platforms. In 2019 she received an award from the International Association for Premenstrual Disorders (IAPMD) for being heavily active during PMDD awareness month. Danyelle lives in New Hampshire with her cat, Pepsi. Her goal is to someday pursue a career in writing.

You can find Danyelle on Youtube, Instagram, and Tumblr.


Spread the Word:

You'll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.