My name is Kyla Nielson, and I have struggled with endometriosis since I was 12 years old. Of course, back then I didn’t know what it was. I didn’t know what was normal and what wasn’t, and I didn’t understand why I was in so much pain when my friends seemed to be simply inconvenienced by their menstrual cycles. For months, I kept my pain a secret. My mom was in the hospital, and I was too embarrassed to tell anyone else what I was going through. When she came home, she saw me bedridden, puking from the pain, passing out from the pain, and bleeding through pads in less than an hour, sometimes bleeding through tampons minutes after inserting them. 

I missed school. I missed family gatherings. I missed doing sports. I missed time with friends. I missed out on doing everything a 12-year-old girl should be able to do. She decided to take me to an OB-GYN, and he didn’t believe anything was wrong with me. We told him about everything—about my blood clots the size of my palm, about my passing out and puking from the pain, everything. He told me that everybody gets cramps and that some women just have heavier cycles than others. He refused to do any testing and told me to just take ibuprofen. 

I suffered in silence for two more years before going back to that same OB-GYN, who told me the same thing and offered birth control, saying it would help. Birth control made me sicker. It made my cycles even heavier. It made me depressed, and my pain went from only during my menstrual cycle to happening all month long. 

At 16 years old, my mom took me to a nurse practitioner who specializes in women’s health. I tried two different birth controls under her care, and she misdiagnosed me with PCOS using only an ultrasound. She also made a very unprofessional comment to my 16-year-old self about how I could “just get pregnant” to avoid my periods for a while. She then started me on the medication metformin, which caused me to start urinating blood and caused me to have blood sugar regulation problems, as I did not have prediabetes or even higher-than-normal blood sugar levels to begin with. 

She told me the blood in my urine was from UTIs, even though every urinalysis she ran came back negative for infection, and prescribed me multiple antibiotics, which I later found out were not needed. During this time, I went to our family practitioner, who told me to stop taking the metformin, to stop taking the antibiotics, and sent a referral for me to go to a urology specialist. He suggested endometriosis as a possibility for my pain. 

At my urology appointment, the doctor did a cystoscopy and told me there wasn’t anything to suggest the blood was coming from anything specifically wrong with my bladder, kidneys, or renal tubes. He also suggested endometriosis. We then went back to the same OB-GYN who told me to just take ibuprofen when I was 12 years old and asked for exploratory laparoscopic surgery. He told me I was too young and to come back when I want kids, and in the meantime, to just take ibuprofen, as there was nothing else he could do.

I went back to my family practitioner at 17 years old and asked him to remove my Nexplanon birth control, as it was causing me to bleed every day nearly a year after getting it. He again suggested endometriosis and recommended I get exploratory laparoscopic surgery. 

Shortly after, I met my now-fiancé. I always knew I wanted to be a mother, and he always knew he wanted to be a father, so at only 18 years old (I know, I know—very young, but we were financially stable and ready), we started trying for a baby. I knew it could take up to a year to conceive, so we tried to keep our hopes up with every negative, month after month. Month after month, my menstrual cycles also seemed to get worse. 

The heartbreak of infertility is just salt in the wound of endometriosis. It has hurt to urinate since I was 16. I have menstrual-like cramps every single day that prevent me from working normal hours, and when I am on my cycle, I can barely leave my bed. I can’t work at all. I can’t do anything without my heat pack. I can’t eat. I can’t sleep, and no amount of just taking ibuprofen helps the pain. 

Now I’m almost 21, I’m over two years into infertility, and I haven’t had a normal life in almost a decade. I finally found a doctor who believes my pain, who found endometriosis via ultrasound showing my left ovary stuck, and who wants to do an excision surgery to help me live a better life and hopefully help fulfill my dreams of being a mother post-op. I cried on the exam table when he told me he found it. Relief washed over me when he told me that I am not crazy, I am not dramatic, this is not normal, and my pain is real. 

Insurance doesn’t cover excision surgery, but it is now my only option for being able to live a somewhat normal life. We are currently living paycheck to paycheck after sewage flooding took our apartment, and the surgery is $6,500 that we just don’t have. That is why I am asking for help. 

This is my story, and millions of other women have stories just like mine. Until insurance and OB-GYNs believe our pain, until they prioritize women’s health the way they prioritize other chronic illnesses and diseases, our only option is to reach out to nonprofits like yours to ask for help. I thank you for taking the time to read my story. I appreciate the help you have given women just like me, and I hope you have the ability to help me too. Thank you.