A lot of girls I knew growing up started taking birth control pills to prevent heavy periods, cramps or any other menstrual-related misfortune. Doctors preached to adolescent girls that the pill was a cure-all for any monthly malady. It was quick and painless; you only needed to take it once a day. Doctors told me this too, so when I was 16 I went on the pill for the first time to “cure” my irregular periods.
Needless to say, the pill didn’t fix me- it actually led to worse complications. At 18 years old, I have been on four types of birth control pills and I have a whole host of symptoms and potential diagnoses: my cramps and debilitating pain could be endometriosis working in tandem with dysmenorrhea, my once clear skin breaking out could be polycystic ovary syndrome, the vomiting and nausea I encountered every month on the second pill I tried could be an estrogen sensitivity. Unfortunately, there is not a treatment for many female reproductive disorders except birth control. Every time I go to a doctor and ask what I can take to stop the pain I am told that another brand or dose of the pill might help. Any other potential treatment is dismissed; a hysterectomy is out of the question because I am young, and surgery is unnecessary because I am otherwise healthy. It is truly frustrating to have been to three doctors and tried four treatments only to have inconclusive guesses as answers.
I started my first pill to regulate my cycles when I was 16. My pediatrician actually brought up the pill for the first time when I was 13 or 14 and had not yet started my period. She told me that my background as a gymnast and cheerleader along with my high concentration of muscle mass were responsible for my late start. After two years of irregularity, I was done-with my athletic practices and competitions and I needed a schedule so my period did not unexpectedly come when I was competing.
My first pill was a low dose combination pill and it was awful. My skin used to be clear, but the pill made me break out and that destroyed my confidence as a high school junior. Following my doctor’s advice, I stopped using birth control for nine months and let my body go back to its normal rhythm.
After those nine months, I wanted to go back on the pill. My periods were heavy and my body ached, and I was still terrified that my period would come when I was in the middle of a cheerleading competition. I had told my doctor about my skin insecurities on the previous pill, so she prescribed me a tri-phasic pill, a combination pill that increased its amounts of hormones each week before dropping all hormones for the placebo week. I was on this pill for seven months before I was physically sick of it, every single month I would become nauseous and vomit during the middle of the night on the first Sunday I started the pill. My mom called my doctor the first time that I got sick, but my doctor told her that it was normal for the first three months. The nausea continued well past the three-month mark, so I stopped taking it at seven months.
During the time I was on the second pill, I started experiencing heavy cramps and bleeding, as well as abdominal and pelvic sensitivity. I felt the pain when I was on my period and my ovaries felt swollen and hurt to the touch at random times throughout the month. I went to a second doctor and was scheduled for two ultrasounds, and I was prescribed a low-dose combination birth control pill (my third pill). I switched to the third pill immediately but delayed my ultrasound until my pain was unbearable. At this time, I was interning at my mom’s friend’s office where she is a nurse practitioner. She listened to my complaints about my pain, then took one look at me and told me to get the ultrasound immediately. Following her advice, I got an ultrasound to check for ovarian cysts that could indicate polycystic ovary syndrome (PCOS). The ultrasound did not show any red flags that something was drastically wrong; no cysts were visible, so the cause of my pain was still unknown.
This really frustrated me. I had tried three pills at this point, suffered heavy cramps and bleeding and mysterious pains in my ovaries, yet the ultrasounds showed nothing, and I felt like my doctors did not understand my pain. I had spoken to several doctors on the phone who reviewed my results and told me that I was perfectly fine, but when I argued that my pain did not go away, they were silent. Dismayed and confused, I went back to my doctor to ask for answers.
My doctor told me that my pain may be caused by endometriosis but introducing scar tissue could worsen the pain. I was left with more confusion, persistent pain and a prescription for pain medicine for my dysmenorrhea (painful periods).
After that last appointment, I continued using my third pill for eight months. My periods started out light but turned heavy and painful after a few months. I was still feeling sick at the beginning and end of my cycles. When I came home for winter break, I went to a different doctor to talk to her about the possibility of PCOS and endometriosis. She prescribed me a fourth type of birth control pill, telling me that birth control would be prescribed if I had either of those two disorders. She also prescribed me a different type of pain medication, since the one I was on previously left me with headaches. I took a blood test to check my hormones for abnormal amounts of androgen and testosterone (hallmark symptoms of PCOS), but the results were nothing suspicious. Again, I was advised not to order a laparoscopy until it was necessary. Instead, I was told instead to take my pills continuously, skipping three periods and seeing if I still felt pain at certain times of the month.
I know that it is not anyone’s fault as to why I am left with questions after years, but it still frustrates me that after almost three years on birth control and quite a few conversations with doctors and nurses, nothing has been confirmed. My symptoms have been all over the place, not following one set list for one specific disorder; the irregular cycles are a symptom of PCOS, but the pelvic pain is a symptom of endometriosis, but I do not have the hormone imbalance of PCOS or the specificity of the pain of endometriosis. Along with my mess of symptoms, I have a high pain tolerance, making it difficult to articulate my pain levels. I have never called 911 for my pain, nor have I ever skipped school, but I have collapsed to the ground due to the severity of the pain. I continuously tell people that my invisible pain is real and exhausting.
Disorders like endometriosis frequently take 10 or more years to diagnose and are rarely diagnosed before discovering infertility. Women wait in pain for a decade to find out the cause of their problems after being told that “everyone has cramps” or that they are faking it for attention. With limited research and treatments (much less a cure) for disorders that plague nearly 10% of women in the United States, it is imperative to speak out about our pain. I have done a research paper and an oral presentation about this topic for my Colloquium class this year and I have been vocal about my pain for years, trying to spread awareness and let other girls who suffer from painful periods know that they are not alone.
My journey through female pain is just beginning, and I have a lot more to learn about female reproductive disorders. I hope that in the future there are better treatments available. I hope that doctors believe female reproductive pain and are more understanding to their adolescent patients. But most of all, I hope that other girls who can relate to my experience know that they are not alone in their pain; there are whole communities dedicated to women who experience reproductive disorders and pain.
RESOURCES
https://www.endofound.org/
https://www.acog.org/Patients/FAQs/Uterine-Fibroids?IsMobileSet=false