Seven years ago, I was suffering through one of the worst phases of my life. Nearly every morning, I would wake up feeling sick, fatigued, and incredibly itchy. Burning, blistering hives covered my entire face, neck, chest, and back, spreading fiercely down the rest of my body with no relief from medication.
I looked like a different human entirely. My eyes were bloodshot and swollen. My hair was flat and thinning. My lips were chapped, my skin was dull and irritated, and I was nearly 20 lbs underweight. Any time I’d eat, I would immediately feel like I had food poisoning, despite only having a slice of toast or a simple banana.
“I feel like my body is rejecting me,” I told my doctors. I didn’t know how else to describe it.
I must have seen over 50 specialists over the last several years, spending tens of thousands of dollars on testing (which found nothing substantial), medications (which didn’t help), and visits to the ER (which resulted in my symptoms being dismissed as anxiety). Like many women in today’s healthcare system, I felt both helpless and paranoid.
Maybe I was doing this to myself. I mean, I have obsessive-compulsive disorder (OCD), after all. It’s linked to hypochondria, experts say, and stress can cause a whole host of issues. It must be self-inflicted.
Seven Years of Suffering
It wasn’t until seven—yes, seven—years of suffering later that I thought: enough is enough. I was in therapy. I was taking medication for my mental health. I was doing yoga, meditating, eating clean, exercising…I had great friends, a supportive family, a fulfilling career…
I had this beautiful life and a regulated nervous system, yet I was still sick. I was still covered in hives every month, like clockwork. And along with those allergic reactions, I would also get low-grade fevers, joint pain, chest tightness, exhaustion, stomach upset, panic, depression, apathy, and rage toward myself.
This became my normal. I thank God every day for having my own freelance writing business; otherwise, I don’t know that I could’ve sustained a normal career with all these symptoms and medical appointments.
But the cyclical nature of my symptoms caught my attention. I noticed that I would have two weeks of relief from some of these symptoms: during menstruation and immediately after. Once I’d reach ovulation and the luteal phase, as progesterone would rise, everything would go downhill.
So, I started researching. I googled “hives before period” and “cyclical rash during luteal” and a host of other embarrassing internet searches. That’s when I found an article on the National Organization for Rare Disorders (NORD), titled “Progestogen Hypersensitivity.” It was published as recently as 2024.
“Progestogen hypersensitivity (PH) is a condition where the body has an allergic reaction to progesterone, a hormone produced by the ovaries, or to synthetic forms of progesterone called progestins, which are often used in birth control or fertility treatments,” the article read. “The presentation of PH is varied and can start at any time from the first period (menarche) to menopause in reproductive-aged women.”
Diving Headfirst Into Progestogen Hypersensitivity
As I dove headfirst into more research, I learned that PH, also often referred to as autoimmune progesterone dermatitis (APD), can be triggered by birth control use—specifically, progestin-only pills (POPs), which contain only a progestin and no estrogen. In sensitive individuals, this can overwhelm their system and cause them to develop an allergy to their own progesterone.
In my case, after being diagnosed with polycystic ovarian syndrome (PCOS) in college, I was put on a POP without any sort of conversation about risks and potential side effects. I trusted my OBGYN and took the pill as instructed, albeit only for a few months, as I didn’t like how my body reacted to it.
Little did I know that that short period of exposure would lead to a chronic, life-altering diagnosis. Little did I know that my body would no longer tolerate its own progesterone. Little did I know that my mental health was actually worsened by this new condition, not the other way around. Little did I know that I might never safely carry a pregnancy to term—that terrifying risks would now plague my dream of becoming a mother.
Late last year, an allergist (to whom I owe my entire life) listened to my case and confirmed my suspicions. Turns out, I know my body better than any of those previous dismissive doctors did. What a concept! Unfortunately, women are used to being brushed off, labeled as crazy and dramatic, or told we’re to blame—even when our bodies are screaming in agony. We’re given band-aids (like birth control pills) for our horrific symptoms, then gaslit when those band-aids trigger more serious complications. It is deeply infuriating.
In this post-diagnosis phase, I’ve been feeling immense grief and rage. I’m mourning a future I might not have. I’ve always wanted to be a mother, and I have planned my entire life around it, prioritizing stability and security for my future children. Now, I’m told it’d be risky for someone with my condition to get pregnant. PH is linked to miscarriages (some say they had 10+ while trying to conceive), as well as life-threatening anaphylaxis in many women. Though some people have found (temporary) success through desensitization, the only true cure is a total hysterectomy.
And I’m angry. So angry at all the years, money, and emotional energy wasted on trying to prove that something was wrong to anyone who would listen. I’m angry that this awful condition impacted my mental health, causing bouts of depression, panic, and irritability that disrupted my closest relationships and, in many cases, my ability to function.
I Just Wanted Someone to Tell Me I’m Not Crazy
All along, I just wanted to be taken seriously. I just wanted someone to tell me I’m not crazy—this isn’t all in my head. That I have a right to feel the way I do. I hadn’t realized just how much all the medical gaslighting impacted me emotionally. I’ve spent nearly a decade blaming myself and downplaying my feelings/symptoms in other regards, because I truly thought, “I must be the problem.”
It is so important to me that women—or anyone, really—hear my story. That they know to keep advocating for themselves, even when no one else will validate their experience. I am lucky to have had friends and family stick by me through all of this, coming to appointments and speaking for me when I lost my own will to do so. If I’ve learned anything during this journey, it’s that the right people will listen, take you seriously, and fight alongside you.
If I’m honest, I don’t know where to go from here. I’m currently taking some time to process this diagnosis and allow myself the space to consider my choices. Unfortunately, I’ve been turned away by many specialists in my state because they don’t feel comfortable treating such a rare disease. (There are fewer than 200 reported cases, but I suspect this is because women are not taken seriously, and research into women’s health is an absolute joke.)
But oddly enough, this diagnosis has felt like a weight off my shoulders. You would think it’d be the opposite, but in reality, we women are stronger than we give ourselves credit for. We aren’t looking for sympathy, attention, or even an easy path. We just want someone to believe us when we say something is wrong.
I knew it all along, and I will now spend the rest of my life listening to my body when it speaks to me. I don’t want my body to have to scream in order to be heard. Not anymore.
The post I Was Told It Was ‘Just Stress’ for Seven Years. Turns Out, I’m Allergic to My Own Hormones. appeared first on VICE.
