I got my first period when I was 13. I was at my dad’s house and yelled from the bathroom for my stepmom. I was sitting on the toilet when she walked in.
“I started,” I told her.
She opened the cabinet, tossed me a tampon, and walked out. I stared at it.
What the hell am I supposed to do with this?
With my pants still around my ankles, I waddled to the cabinet to find the tampon box. I dug out the tiny instruction booklet and shuffled back to the toilet. This was the first time I’d been forced to figure out my reproductive health for myself, and it wouldn’t be the last.
I grew up with four brothers, so our family never discussed periods. My periods were irregular from the start, and I was put on birth control pills to regulate them. Like clockwork, I’d start my period on the second day of placebo pills. It would last five to six days, with one day of bad cramps and heavy bleeding. The cramps didn’t interfere with my life because ibuprofen usually did the trick. The heavy bleeding, however, resulted in embarrassing leaks that led to my little brother telling his friends that I pooped my pants. I assumed this was “normal” for girls and just needed to get through it.
As I got older, I needed a heating pad on my bad cramping day of the month. I still didn’t think it was anything out of the ordinary and hadn’t even thought to ask my mom about her periods. When I was in my late 20s, I did mention to my gynecologist that the cramps were getting worse. She told me it just comes with age, so I soldiered on for a few more years.
One day, I was at a women’s march with my nephew when I felt a wave of pain more intense than anything I’d ever experienced.
“I’m sorry, bud,” I said to him. “We gotta go.”
I was supposed to get my tattoo finished later that afternoon, but I knew I couldn’t sit still for it. I canceled my appointment and took a scalding hot bubble bath to ease the cramps. I’d been getting my annual women’s exams, and they always came back normal, but I was starting to think something was wrong with me.
A few months later, my pain continued to worsen. It began with cramping during sex, followed by spotting for two days. Then it progressed to painful insertion. In March 2022, I finally listened to my body and told my primary care doctor about my symptoms. She started with a pap. When the results came back abnormal, she told me I had HPV and needed a colposcopy to make sure I didn’t have cervical cancer. The colposcopy revealed lesions, so they did a cervical biopsy. Although it “wasn’t supposed to hurt,” it was excruciating. Even at 31, I was grateful to have my mom with me as I squeezed her hand and cried.
When the results of my biopsy came back, my doctor congratulated me.
“You don’t have cancer,” she said. “Come back for another pap in a year to ensure the HPV has gone away.”
That wasn’t good enough for me.
“I’m grateful I don’t have cancer, but what about this pain?” I asked.
This was the first time I started fighting for myself. I knew something was wrong and refused to accept it anymore. She referred me to an OBGYN, who did an intravaginal ultrasound and found a ruptured cyst the size of a Dum Dum sucker on my right ovary. She said some of the fluid might be from an endometrioma or “chocolate cyst,” which could indicate endometriosis.
I’d heard of endo but never thought I might have it. I had no idea how hard it was to diagnose and assumed a doctor would have known I’d had it at some point in the nearly 20 years I had suffered.
This revelation sent me into research mode by listening to podcasts like “The Endo Babe Podcast,” “The Cycle,” and “In Sixteen Years of Endometriosis.” I scoured TikTok, Instagram, and Reddit to hear stories of people with endo. The more I learned, the more I felt validated. I learned there was no cure for endo. I learned an anti-inflammatory diet might help, so I cut out gluten and dairy. I learned the only way to get an official diagnosis was through a laparoscopy. And I learned excision surgery from a dedicated endo specialist was the gold standard for treatment.
With this information, I found a specialist I trusted. He did an ultrasound and noticed a thickening of my uterine wall, indicative of adenomyosis. He also believes I have endo and agreed to do my surgery a month from now.
I know the fight won’t end there. I will face ongoing physical battles with these chronic diseases. Clashes with my insurance company to cover the costs. A struggle to get pregnant. More arguments with doctors as I stand up for myself throughout the process. And a fight against the stigmas—people who don’t take me seriously because “You look fine” or “It’s just a bad period.”
Although the process can be frustrating and the fight exhausting, I’m proud to say that having endometriosis has taught me to listen to my body and advocate for myself. A year ago, I was too scared to ask for a tissue when I needed one at a job interview. Now, I’m not afraid to demand the care I need and deserve.
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*Patient stories submitted to EndoFound.org are the patient's views, not necessarily those of the foundation. All testimonials are from real patients, may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.
