Category: PMDD

I’m allergic to my own hormones

“Are you in pain today?” the nurse asks looking up from the computer screen.

“A four,” I say, anticipating her request to “rate the pain on a scale of 1-10.”

She reads the next question, “Do you feel safe at home?”

“Well, I live alone with my poodles, so yes… except when one of them farts and I think I’m going to die of asphyxiation,” I say, getting bored.

The nurse continues, “When was the last day of your first period?”

“2012,” I grin. This time I’m not joking.

“Are you on some kind of treatment?” the nurse asks.

I consider telling her I have a five-year-old fetus growing inside of me, but I’m too tired to explain what humor is. The truth is hard enough to believe anyway. “Yes. I’m allergic to my periods.”

She takes my blood pressure and then flees the room.

*****

Five years ago, I didn’t believe anyone could be allergic to their own hormones. How can you react to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life.

I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is, it is one of my worst nightmares. As my hormones dropped every month, feelings of doom clouded my mind, while my body became heavy and exhausted. Like clockwork, I succumbed to a multi-day panic attack for no tangible reason. My mind suggested death as a better option, while I tried to pretend I was okay at work and around loved ones.

For twelve years, I sought relief from this torture. There was (and still is) no lab test to measure my suffering. I tried antidepressants, therapy, and supplements. My symptoms persisted as my fear of my body grew.

Finally, a compassionate midwife worked with me to trial hormone pills. One of my biggest pet peeve of all time: women calling all birth control pills “the pill.” Some birth control pills absolutely made my PMDD worse. We discovered after a short adjustment period my body did best on a low (not ultra-low) dose, monophasic pill taken continuously at the same time every day.

For me, no hormone fluctuations equaled no PMDD. The curse was over. Kinda.

*****

When I met my mast cell specialist several years later, he asked me to list my medications. I told him that I was on continuous hormones for PMDD.

“Premenstrual dysphoric disorder,” I explained. He nodded, knowingly. His familiarity was curious, so I added, “It was life-threatening.”

He nodded again, completely unfazed. Had he heard me correctly?

In my appointment, I learned PMDD can be a symptom of mast cell activation syndrome (MCAS). Normal hormone fluctuations can directly trigger mast cell reactions and many women with MCAS use medication to suppress hormone fluctuations. I also learned doom is a hallmark sign of a severe mast cell reaction. These days, when I’m anxious, I increase my antihistamines and/or reduce my exposure to mast cell triggers.

I experienced PMDD long before I experienced rashes or throat swelling. I often wonder if I could have accessed MCAS treatment sooner, at the onset of PMDD, I could have avoided worsening of my symptoms over time. While many women worry about “Aunt Flo coming to town,” I hope they are also aware of her connection to Anna, Phil, and Axis.

Update

I have successfully stopped taking hormone pills in MCAS remission in order to prioritize muscle growth. I had a normal period! As I approach perimenopause, I have realized how important a MCAS-aware gynecologist will be to protect my mast cells as my hormones inevitably fluctuate.

I have also been diagnosed with DHEA deficiency. Read more about my DHEA journey on Patreon. I hope someday researchers study the relationship between DHEA, PMDD, and MCAS!

Disclaimer

The number one rule of MCAS is: every patient is different. What works for my body may be dangerous for your body. Learn more about trial and error with MCAS.

As always, this is not medical advice. Please talk to your doctor about any concerns or questions you may have. Working with a MCAS specialist may be especially helpful.

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