What is life like living with PMDD?

The first time I took my car keys, sobbing uncontrollably, looking at my then two-year-old and five-month-old sons' scared faces, and knew that I was either going to end my own life or go to the Psychiatric Emergency Service (PES) for help, it was December 2018. Twenty-four hours after being “sectioned”, my period started.

That is what PMDD is for me: a matter of life and death.

If you have not heard of Premenstrual Dysphoric Disorder, you would not be alone. PMDD is currently considered rare and most people I meet have never even heard of PMDD. Since my own diagnosis, and sharing my story, I now know of seven people who have gone on to be diagnosed with PMDD; I don’t believe it is rare at all. I believe it is severely underdiagnosed.

No matter your gender, you have probably heard of PMS. Most likely as the butt of a cis-gender male joke. PMS and PMDD are only somewhat similar, in the same way an apple is similar to a tomato. Sure, they are both technically fruit, but they really could not be more different. Or maybe a man-eating tiger versus a domestic kitten would be a better analogy; both are cats, but one has a higher probability of killing you.

PMDD is a condition in which a person with ovaries experiences extreme mood related symptoms that seriously disrupt their life and relationships. Symptoms develop after ovulation and go away during the first few days of bleeding. Emotional symptoms include sadness, hopelessness, anxiety, irritability, sensitivity, anger, overwhelm, and withdrawal. Physical and behavioural symptoms include lack of energy, concentration problems, sleep problems, food cravings or binge eating, breast tenderness, bloating, weight gain, headaches, and joint or muscle pain.

This is not a hormonal disorder.

PMDD cannot be diagnosed by blood tests. There is nothing wrong with our hormones; our brains are reacting improperly to the normal hormone fluctuations of a menstrual cycle.

I often wish it was called a “spectrum” disorder because it often shows up as people being on wide ends of the same spectrum. Had more of my doctors thought of this disorder as a spectrum, perhaps my life would have gone differently. Certainly, my suicide attempt would not have happened under such a lack of self-awareness.

What is it like living with PMDD? Please remember that each person’s experience with this illness is different. Here is what is has been like for me.

Back to that moment in 2018, when I went to the PES for help, I asked the psychiatrist, “Could this be related to my menstrual cycle?”

The psychiatrist replied, “Well, do you feel better as soon as your bleeding starts?”

“No”, I answered. I often would not feel better until a few days into my bleeding.

“Then no”, he replied. And both he and I left it at that. He did not elaborate on what condition it could be had I answered yes, and I trusted enough not to Google for more information.

I knew a lot already about female reproductive organs and how a menstrual cycle should work. Years previously I had read Taking Charge of Your Fertility, by Toni Weschler. I have always felt this book should be required reading for anyone with a uterus. It helped me self-diagnose my sporadic periods—which had confounded my GP and OBGYN—as Polycystic Ovarian Syndrome (PCOS).

So with PCOS and sporadic to non-existent cycles in the mix, it was pretty hard to make a connection between symptoms starting two weeks before bleeding with a period you don’t even know is coming.

Symptoms most reportedly start in one’s mid-20s; however, people report an average of 10 or more years of suffering from symptoms before receiving a diagnosis. For me, this diagnosis made sense going back to puberty at age 13.

Most often, people report a reprieve of symptoms during pregnancy, experiencing gradual hormone fluctuations instead of menstrual swings. Some women even report a reprieve during breastfeeding and before their postpartum period begins.

People overwhelmingly report their symptoms to worsen post-pregnancy, especially second pregnancies and on. Again, this was all true for me. I had Postpartum Depression (PPD) arise with my first son after my period returned, but attributed it to weaning. I had horrible PPD with my second son, who could not be breastfed at all. I now attribute a lot of what I went through to PMDD rather than PPD.

The decision to act on my suicidal feelings was very quick and reactionary. But the feeling to end my life had been going on long-term. My family, friends, doctors, counsellors, and psychiatrist all knew I was severely suicidal. I had self-admitted to the PES ward twice, begging them to help me. I have chilling awareness that a person can only go so long with those thoughts before not being able to take it anymore.

During my third stay in PES, I woke up three days after being admitted. And still, I was released just 48 hours later as our health care system has no beds for mental illness patients, even when they are telling anyone who will listen “I’m going to try to kill myself again, I have small children, please help me.” CPS showed up but provided no actual help.

I had the financial wherewithal that enabled me and my family to find the money to send me to private in-patient treatment for my severe depression. I left my two young sons and husband for nine weeks. My program included a combination of adequate sleep, frequent balanced meals, exercise, 9-5 cognitive mental health course with a strategy toolkit, counselling, daily peer support group, and psychiatric medication management.

This program is one of the only ones in Canada that will treat someone with mental health issues who does not also have addiction issues. It costs a minimum of $700+ per day. It helped immensely but they still did not diagnose PMDD.

Like the PCOS, I was once again forced to self-diagnose when, two months after discharge, I found myself in a massive fight, separately with my family and multiple friends. I had an acute re-emergence of suicidal thoughts. I was once again crying and inconsolable, which felt like salt in the wound after I had worked so hard and spent so much money to “get better”. I asked myself very loudly in my head, “How can I be suicidal again, when just a few weeks ago I was telling someone how grateful I am to be alive?” The next day, bleeding started.

A Google search of “suicidal at menstruation” two years too late, opened a million windows, doors, and boxes, and suddenly two-thirds of my life made sense.

I talked with my psychiatrist back in my treatment program who confirmed my diagnosis but said they could not treat me. I once again saw my GP, this time with printouts highlighting all my symptoms. I had a psychiatrist from before my treatment program, thanks to all those stays in PES, and I went and saw her as well. I told them exactly how all these previous treatments allowed me to slip through the cracks of both finding this diagnosis and treating it. I told them exactly how I wanted my treatment to go from then on. Thankfully they listened.

My experience with PMDD has been an extreme case, complicated by comorbid issues (which is common) or poor reactions to certain treatments.

I first tried estrogen-based birth control. That’s the widely agreed upon first step to try and treat PMDD. It did not work and caused unliveable side effects.

I then went through three different SSRI antidepressants that either did not help or again, caused unlivable side effects. It was determined that I am also progesterone intolerant.

Finally, after a 9-month wait, an OBGYN thankfully agreed to try medical menopause. This process uses a drug to medically shut down one’s ovaries and begin the process of menopause. No ovaries = no hormone fluctuations = no PMDD symptoms.

In order to be in medical menopause at such a young age (I am 32), I am required to tolerate Hormone Replacement Therapy (HRT). It is very dangerous to not have estrogen or progesterone during the years that menopause would not be occurring naturally. Because I have a history of not tolerating estrogen or progesterone, the physician allowed me to try the medical menopause, without the HRT, for three months. I am pleased to report that it worked. It was decided to add back estrogen and I’m ok (some cannot tolerate it).

As I write this I am on the six-to-nine-month waitlist for surgery. In my case, the surgery will be a “total hysterectomy with bilateral salpingo-oophorectomy”, aka taking out my uterus, fallopian tubes, cervix, and ovaries. Without a uterus, you do not need to take progesterone to protect the uterus from cancer.

I do not make the decision to remove my female reproductive organs lightly, and I have talked with my counsellor extensively about this hard decision. As I said earlier, this is literally a matter of life or death for me.

I want to take a moment to point out my privileges.

As a white cis-gender woman I am already walking into a room with more perceived credibility than some. I received an ongoing psychiatrist through a system loophole. Many do not have access to proper mental health care professionals. Most people cannot afford the treatment program I attended. The drug for medical menopause is $450 per month and I had to get special authority from our benefits program to get it covered on a short-term basis. Many do not have this luxury. I am grateful that I was not met with ridicule by my doctors. If you go into any PMDD online group chats, it’s filled with people who have been laughed at by medical professionals. I am also thankful my OBGYN is willing to do what I consider life-saving surgery. As again, most people are met with a door slammed in their face. A surgeon is reticent to do this surgery on someone so young.

My advice to anyone reading this who is thinking these symptoms might fit is to start by doing some research online.

You cannot replace a medical professional, but you can at least try to educate yourself on your own body.

Don’t give up. I am certainly thankful that I didn’t.

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