I cannot remember a time when my period wasn’t debilitating. When I was 13 and my mom would drive me to school, she’d have to pull over because I was doubled over in pain, screaming and gripping the car door to the point that I left nail marks.
It got worse in high school, where fainting and vomiting were the norm. I’d have to leave school once the symptoms started and stay home for the next few days. I vividly remember the school nurses telling me that childbirth was much worse, insinuating that I should toughen up, and offering me a ginger ale as a solution. And in probably the most outrageous and embarrassing moment of all, my assistant principal once went around school on a day when I was absent and asked kids in my classes if I ate, implying that my problem was that I had an eating disorder.
I sought answers constantly. I went to countless OBGYNs, gastro doctors, endocrinologists, and rheumatologists. You name it, I had it checked, and by multiple doctors in each specialty. I was put on so many different forms of birth control pills starting in high school, yet I was never ordered a simple ultrasound or blood work. I was often dismissed as having anxiety and depression, being oversensitive, or having a low pain tolerance. Some straight-up said, “There’s nothing wrong with you.” When I started losing hair from stress and thought I was going crazy, I gave one more OBGYN a shot. After explaining my situation, she got up from her chair, walked over to me, took my ponytail out to assess my hair loss, and said, “You’re fine. It’ll grow back. My daughter had the same thing, and she’s fine.”
I stayed on the pill for 10 years, never having a period during that time, but still experiencing some symptoms. When I was in my mid-20s, I decided to get off birth control to reset my body to see where I was after a decade—and the pain, fainting, vomiting, and diarrhea came back worse than ever. When I was 26, I found a specialist who explained that endometriosis is diagnosed through surgery, but she said everything I told her screamed that I had the disease. She referred me to a surgeon who did surgery in September 2023. He found endometriosis pretty much everywhere, including the posterior cul-de-sac, pararectal fossa, and pelvic sidewalls. When I woke up from surgery and was told what they found, I cried. It was validation after years of being dismissed by nearly everyone.
I felt significantly better for the next couple of years after the surgery. Only in recent months has the pain returned in my thighs, usually while I’m asleep. I’m also experiencing fertility issues, Premenstrual Dysphoric Disorder (PMDD), Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), and ovarian cysts. I continue to work with my doctors in each case to weigh my options and receive the best treatment.
As I reflect on my teens and most of my 20s, I realize that I lived all of those years knowing that something was wrong with me, unable to find support, which weighed heavily on my mind and body. I missed out on so much—school, dance and other hobbies, time with friends, time with family, and simply enjoying a normal day. The stress of everything caused me to lose my hair, which was devastating considering how, as is the case for many women, it’s a big part of my identity and confidence. And what made everything harder was that nobody around me understood how I felt—something that continues today as I experience symptoms again.
People think I’m making excuses for missing things, which leaves me behind in friend groups. I have endo belly regularly, which has prompted people to ask me if I’m pregnant and forces me to plan outfits around it. I’m in school now to become a diagnostic medical sonographer and graduate in December, and I’ll have to fight every bit of the way to get there. I experience daily fatigue to the extent that I feel like I can’t accomplish normal things in a day, which makes me feel like I’m being lazy, which causes others to question me, which affects my mental health.
I know it’s impossible for everyone to understand the pain we go through, but if we could make endometriosis more known, people might get it. My heart breaks for the younger me and for every endo warrior who has felt the way I have and do, or worse. I am so sorry for those without an official diagnosis. I see you and hear you. Keep pushing for answers. You know your body best and need to be your own advocate. I’m also so sorry for those with an official diagnosis but who aren’t receiving the proper treatment or are still misunderstood. We deserve better and need to support each other! We need to fight together in order to see change. What has made my situation a little lighter has been the endometriosis community. We really are the most understanding and supportive people, and we need to lean on each other.
I was fortunate to experience some time after surgery with little to no pain or other symptoms, and I long for that experience to be consistent. That is my wish for me, for you, and for every young girl who is about to experience her first period and the devastating symptoms that could come with it.
*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.
