“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 laugh at my own joke. The nurse does not. Had she heard that one before?
The nurse continues, “When was the last day of your first period?”
“2013,” 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 be allergic to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life. With the help of the internet, I realized I was experiencing premenstrual dysphoric disorder (PMDD).
PMDD was my most severe mast cell activation symptom from age 15 (when I got my first period) to age 27 (when I started taking continuous hormone pills). In fact, aside from my reactions to hormones, I felt healthy. Like MCAS, at that time, PMDD was relatively unheard of and provoked a lot of skepticism. No lab test can diagnose PMDD. Women with PMDD have the same levels of hormones as women without PMDD.
I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is it is living hell. Imagine a panic attack that lasts several days every month. Imagine being overwhelmed by impending doom, even though nothing has happened. Thoughts of hopelessness and paranoia cloud your mind, as your body becomes heavy and exhausted from crying. Your mind suggests death as a better option, while you try to pretend you’re okay for your job and your relationships.
For twelve years, I sought relief from this torture. I tried antidepressants, therapy, and supplements. Finally, a compassionate midwife worked with me to find a hormone pill that my body tolerated continuously. I learned no hormone fluctuations equaled no PMDD. The curse was over.
When I met my mast cell specialist several years later, he asked me to list my medical history. 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, “I attempted suicide a couple times.”
He nodded again, completely unfazed. Had he heard me correctly?
Soon after, I learned that hormones can trigger mast cell reactions and many women with MCAS use medication to suppress hormone fluctuations. I learned doom is a hallmark sign of a severe allergic reaction. These days, when I’m anxious, I try Benadryl and it often helps.
Is mast cell activation the cause of all PMDD? I do not know, but I am suspicious. Am I insinuating women with PMDD also have MCAS? No, although it’s possible. Mast cell activation is not the same as MCAS. However, I wish I had known about MCAS sooner and gotten tested. Perhaps, I may have been able to stop the progression of my disease.
As a final note, I’d like to share my biggest pet peeve of all time: women calling all birth control pills “the pill.”
When women tell me “the pill” made their PMDD worse, I want to ask, “Which fucking pill?”
The truth is some kinds of birth control pills absolutely make PMDD worse, while others, if taken continuously, can suppress PMDD completely.
Here are my tips for finding the right hormone medication to suppress PMDD:
- Monophasic, not multiphasic
- Avoid ultra-low dose
- Continuous use (no inactive pills), not regular use
- Take it at the exact same time every day
- Be patient as your body adjusts to the new medication
- Try another one if the first doesn’t work
As always, talk to your doctor about any concerns.