PERSONAL ESSAY: Coming to terms with a common — but little known — women’s disease

Sierra at 7
The author at 7 years old, before her struggles with a common women's disease began. 

By Sierra Thornton

For months, a mother looked into her daughter's eyes and could not find what once was a bright sparkle. Every night her daughter came home from band practice and went straight to her room. The little girl that she used to watch TV and cook with every night was suddenly mute.

"My little girl was becoming a stranger. She would lash out at me for no reason. I knew that there was something deeper going on because she was always such a good child. It was not something that happened overnight; it gradually grew." The mother spoke with tears forming in her eyes. "I knew something was wrong when she lashed out at her father. She is a daddy's girl; she would never upset him."

For months, a daughter walked past her school lockers on the way to each class, letting the day slip by without releasing one smile, going to band practice, practicing the same music for weeks,  preparing for the start of marching band season. All while she wondered, just like her mother, “What is wrong with me?”

Sierra as teen
The author as a teenager. 

Avoiding going to doctors became a hobby for the daughter, because every doctor said the same thing: "Just lose weight, and you'll be fine." She believed them and started doing anything to lose weight. At 10 years old, the little girl was placed on weight loss supplements and entered a Weight Watchers program. The techniques worked for a short period, but ultimately, she found no success.

The conversation at every family function would be about the little girl's weight. Family members she had not seen in years would give their take on how and why she needed to take action to lose weight. Those family members did not know that every word they said about her stuck with her for the rest of her life.

The daughter, now a senior in high school, grew angrier and angrier at her failing health. Her problems did not seem like they could be solved so simply. Her weight did hold her back physically, but it seemed her mental health was becoming a problem.

There would be moments where she would lash out at her mother in spouts of anger. Seconds after she would yell, she would cry because she did not recognize why she was upset to begin with. It was a back-and-forth battle with her mind. The unknown was: how did this relate to her weight?

Sierra in High School
The author as a junior in high school. 

Thursday, September 22, 2016. The mother's daughter passed out on a football field as her high school's marching band participated in a competition. It was a beautiful North Alabama night; the leaves on the mountain in the distance were preparing to change to fall colors. The sun had just fallen behind the mountain, leaving a beautiful pink and orange sky. The Night of Bands was a charity event hosted by the Madison County school district. It was the night all the bands prepared to show each school who had the better band. Madison County High School in Gurley, Alabama, performed their "Blending Classics," a mix of classic rock and roll and classical music. The daughter was preparing for her flute solo when her fingers began to feel tingly; she started seeing stars, and her legs felt like noodles. That was the moment her mother knew her hobby of avoiding a doctor was over.

The next Monday, the daughter was sitting on an exam table with the doctor listing many medical terms she had never heard before. It all became a blur because she knew the doctor would give her the same response every other doctor gave her. She waited to listen to the same words, but the doctor never said it. Instead, the doctor gave her a real explanation. Polycystic ovary syndrome was something the daughter never heard of, but it was finally an answer of some sort.

Sierra as Senior
The author as a senior in high school, after gaining 70 lb. due to polycystic ovary syndrome. 

PCOS is a common hormonal disorder that affects ovaries in women of childbearing ages. According to the Office on Women's Health, PCOS affects 1 in 10 women. Women with PCOS have hormonal imbalance and metabolism problems that can affect their health and appearance. Most of the time, women never know they have PCOS until they begin to try to conceive a baby.

JuLeigh Baker, Health Education Specialist for the Mississippi State University Department of Health Promotion and Wellness, detailed that many students rarely come in for having PCOS even though it is common.

 "A lot of times, young ladies don't know they have PCOS. I was one of them; I didn't know I had PCOS until after I was married and got off birth control to try to start a family," Baker said. "When young women are on birth control because they don't want to get pregnant, it will regulate their hormones. They do not realize that they have a hormonal issue until they get off birth control. So, their issues have been hiding for so long because of birth control. A lot of them don't realize until later in life."

Infertility is not the only symptom that comes with PCOS. Other symptoms include irregular menstrual cycles, too much hair, acne, thinning hair or hair loss, weight gain or difficulty losing weight, and darkening of the skin. High levels of androgens cause PCOS. Androgens are what some call "male hormones." Women with higher levels of androgens begin to inherit male traits. This prevents the ovaries from releasing an egg during each menstrual cycle and can cause excessive hair growth and acne. The other cause is high levels of insulin. Many women with PCOS have insulin resistance.

When the daughter heard all the details about PCOS, she wanted to know how to get rid of it. However, there is no cure for PCOS; some doctors do not even recognize it as a legitimate concern. There is a combination of treatments that can help alleviate the symptoms. The daughter soon realized she would become a test dummy for different treatments, but it would be worth it to feel like herself again.

The first treatment was a high dose of birth control and Metformin, a type 2 diabetes medicine. The Metformin was brutal to her body, and she never allowed herself to get used to it. The next round of treatments involved birth control and Metformin but also Saxenda. Saxenda is a shot given daily to help increase the ability to lose weight.

Saxenda worked. The daughter began feeling like herself again. Slowly but surely, the smile that was once lost came back, and the mother saw the sparkle in her again. The daughter, who once felt like she lost her identity, began to see her purpose.

“I was no longer just a mute daughter; I started to be Sierra again.”

Sierra at MSU
The author as a student at Mississippi State University. The medication Saxenda helped her combat some of the effects of PCOS. 

For years, Saxenda seemed to answer her health issues until health insurance decided to no longer cover the medication. The usual $40 medication turned into $800 every month. The feeling of not being able to afford the medication made her feel like she was back at the beginning of her journey.

While doctors still have not found a reliable medication to treat PCOS, the daughter remains hopeful about her health. Since being diagnosed, she has fought for more people to know about PCOS. While being involved in her community college’s honors program, she dedicated her capstone project to advocating for PCOS. Social media platforms have also become a place where people can come together and help one another conquer the disorder.

Young women should not have to go their whole life not knowing the condition that they could have. More doctors need to recognize PCOS, and young women should be taught about the possibilities of their health issues. PCOS should not have so much control over someone's body. One disorder changed the daughter's mindset, but it wasn't just the daughter that was affected; the people around her questioned who she was at the time. The daughter made it her goal not to let PCOS control her anymore.

“I will not let PCOS dictate the quality of my life; only I have that right.”