The Nightmare of Living With Undiagnosed PMDD

The Nightmare of Living With Undiagnosed PMDD
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Editor’s note: This column discusses depression and suicide. If you need help, please use the contact information at the end of the column. 

There are many kinds of monsters. When we are little, we fear the ones living under our beds, making us scream at night. As adults, we dread the ones that may follow us home as we tightly grasp our keys and speed up our pace. I fear the one that has haunted me for years. One that climbed onto my back, clawing its way into my brain.

My monster would arrive like clockwork monthly, roughly a week before my period. It would snatch my life from me. Any ideas I’d think up would become scattered. Any strength I had would evaporate, along with my smile. Everything, including every inch of who I was, felt worthless. I’d struggle to make the smallest decisions, closing my eyes, muttering to myself. In my head, the monster’s words, on repeat:

“You waste of space. You make everyone around you miserable. Why are you still here?”

My monster told me I would never be a good girlfriend, sister, or friend. It convinced me that everything that went askew was my fault. Sometimes the thoughts became so disturbing I’d slap myself and shake my head. I wanted it to stop. Screaming did nothing other than scare those close to me.

I knew I’d become a burden, and I wanted to disappear.

My monster has a name. It’s called premenstrual dysphoric disorder (PMDD). It is an extreme form of PMS that I have suffered from for more than a decade. Symptoms of PMDD include anxiety, depression, and severe migraines. It can also cause suicidal thoughts.

I suffered from all of the above, monthly. Yet my PMDD has never been diagnosed.

I spoke with doctors, but most of them shrugged their shoulders. One referred me to a psychologist who, during the first session, barely after I’d sat down, told me that my issue was that I hated myself for not having a child yet.

Holding paws, hoping the monster stays away. (Photo by Jessie Madrigal)

Years passed, and my current therapist shed some light. She noticed how my cycle of self-destructive thoughts always happened before my period. She labeled it a chemical reaction, one I was not responsible for. Since then, only one doctor timidly admitted how it sounded like I had a case of “difficult PMS.”

It was only when I read about PMDD that I recognized my monster.

Yet, very few around me know what PMDD is, or have given me a break over it. Whenever my PMDD became visible to others, I was labeled “difficult.” When I couldn’t hold on to jobs because of the migraines or the recurrent suicidal thoughts, I was accused of not making an effort. My inability to earn more money or be more productive slowly corroded my most precious relationships.

Life with PMDD comes with so much more than disruptive symptoms. It comes with a bad reputation, a vague scent of hysteria. It didn’t matter that something I had no control over was limiting my existence. I never chose to lose the jobs I enjoyed. Being a broken half-person once a month was something others saw as my doing, my choice. Sadly, with no diagnosis, I believed that, too.

One in 20 women are affected by PMDD, a condition that has only recently been recognized by the World Health Organization. The BBC collected stories of people affected by the disease, and out of 200, 140 shared that they’ve felt suicidal. Heartbreakingly, 60 had tried to end their lives. 

And still, there is no effective, reliable line of treatment for PMDD.

Some have hysterectomies that feel lifesaving, others are put on a form of hormonal treatment that does the trick. I was prescribed a daily round of progesterone to keep my periods at bay. After more than a year with no periods, the PMDD has gone, too. I don’t lose control over my own body and mind. There is no severe brain fog to render me useless and turn me into a disappointment to others. 

However, I still fear the monster.

If I come off my medication, my PMDD may return and slowly wreck my life once more. Also, no matter how much I advocate for PMDD, it will mean nothing to some. In their eyes, I will always be broken.

Anyone living with PMDD is actively surviving a war, one they never chose for themselves. We need more research and more effective forms of treatment. More importantly, we require understanding from medical professionals, and those who label us as hysterical, difficult people.

Until then, the nightmare goes on. 

If you suffer from PMDD, please know you are not alone. If you struggle with thoughts of suicide, please contact the Suicide Prevention Lifeline in the U.S. (1-800-273-8255, available 24/7) or Samaritans in the U.K.

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Note: Endometriosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Endometriosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to endometriosis.

My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.
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My name is Jessie. I am a writer and part-time Yoga instructor living in the south of England. Since being diagnosed with endometriosis, I’m determined to be the boss of my chronic illness. You’ll find me with two sausage dogs curled up on my belly and my duvet nearby, writing about life and whatever my mind thinks up. This is my journey.

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9 comments

  1. Priscilla says:

    I would like to make a comment but would like to know if this will be private to you, not published on the Internet. Please could you let me know.
    Thanks

  2. Shemeka Williams says:

    Jessie,
    Thank you for sharing your story and bringing light to this condition. I too suffer with PMDD and often feel very alone. I srongly believe there should be more awareness on this disorder. Again, thank you so much for using your voice for those of us that don’t know how to.
    Sincerely,
    SW

  3. Tea says:

    Hello, could you say what progesterone you are taking and at what dose? I had previously read one of your posts about the progesterone but I don’t see it now. I am on combination pill due to endo to stop my periods and it has helped with my depression. If progesterone only has helped you with the pmdd and stopped your period I am interested in having that as an option. Now that I read this post it is occurring to me my monthly depression could be due to pmdd.
    Thank you.

    • Hiya Tea. I’m currently taking the pill version of the Provera shot. I take 20mg a day. My specialist wanted me on 30mg, but my GP suggested we started at 20mg and see. It feels like I still ovulate sometimes and spot a bit – which is what my doctor said could happen, which is why it is also not considered a form of birth control. But I don’t have any “proper” periods, which means I get no PMDD. Speak to your doctor as anything under the progesterone umbrella, can be tricky, and it truly is a hit/miss form of treatment. In my case, progestin (synthetic progestogen) did the trick. I hope this helps.

  4. Nikki says:

    Did a Google search of extreme depression around 1period and found this. Your description shook me because it is me to a T on those one or two days a month. I instantly felt relieved and that I am not alone or crazy, and will be going to my doctor and making better efforts to recognize these bad days and work on things to alleviate the uncontrollable effects like long walks and possibly changing birth control or some other medical help

  5. Jade says:

    Hi Jess, thank you for writing this and being so open about your PMDD. I too am actually from the south coast and believe I have been dealing with increasing symptoms of PMDD for a few years now, so it is almost a small relief to find and hear others stories to know I am not fully alone in how I feel for two weeks out of every month.
    I know that PMDD triggers and pushes some of my mental health issues over the edge, including obesseive and intrusive thoughts which I am usually able to overcome before ovulation. It’s almost like a tipping scale between feeling pretty great post period and then like my world is ending post ovulation. Am hoping to explore the pill which I was on as a teen.

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