“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 mast cell activation syndrome (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 increase my antihistamines and it often helps. It makes sense my brain can’t work properly, like any other organ in my body, when it’s drowning in mast cell chemicals like histamine and prostaglandins.
I wish I had known about MCAS sooner and gotten tested. Not only would it have probably decreased the severity of my PMDD episodes, which can take an incredible toll on your mental health, but it also probably would have prevented damage to my body caused by chronic inflammation.
I wish more people understood that you don’t have to have rashes or anaphylaxis to have MCAS. IBS, anxiety, migraine, and dizziness are all symptoms as well. Learn more about MCAS testing and treatment.
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?”
For me, some birth control pills absolutely made my PMDD worse.
What helped me personally:
- Monophasic, not multiphasic
- Low dose, not ultra-low dose
- Continuous use (no inactive pills)
- Taking it at the exact same time every day
- Being patient as my body adjusted to the new medication
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 and I am not a doctor. Talk to your doctor about any concerns or questions you may have. Working with a MCAS specialist may be especially helpful.
- Role of female sex hormones, estradiol and progesterone, in mast cell behavior
- Histamine could be a key player in depression
- Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases
- Successful mast-cell-targeted treatment of chronic dyspareunia, vaginitis, and dysfunctional uterine bleeding
- Estradiol and progesterone regulate the migration of mast cells from the periphery to the uterus and induce their maturation and degranulation