Amanda Scheyd left her doctor’s office in Covington, Louisiana different than when she entered. The hair that kept growing around her chin and the absence of her period for the last four months was starting to make sense. The doctor confirmed the then 14-year-old’s fears: something was wrong.
Scheyd was diagnosed with polycystic ovarian syndrome, better known as “PCOS.”
Now, at 22, she still struggles with it. If not for her younger self’s research on her symptoms, she said, she might have never known what was wrong.
PCOS is a hormonal disorder that affects women of reproductive age. It’s characterized by highly irregular periods, excess hair growth on the face or body, weight gain and ovarian cysts. Although the disorder affects 8 to 13% of women, little research has been done on the incurable syndrome.
“I am still looking for a doctor who will help me besides telling me to just lose weight,” Scheyd said.
PCOS can affect every aspect of a woman’s life: mental health, weight, fertility, mood swings, insulin resistance, energy levels and more. Combined, these things make it harder for a woman with PCOS to get through daily life, much less college life.
“I probably have every day somebody comes in and literally in their note it says ‘I wanna be tested for PCOS,’” said Rebecca Breaux, a nurse practitioner at the LSU Student Health Center.
Scheyd’s story is similar to most people who are diagnosed with PCOS: a young girl, between puberty and her early 20s, notices irregular menstrual cycles that start at a later age or cause her to go months between periods. She seeks help from a doctor who tests her for several things before landing on PCOS, a syndrome she didn’t know anything about before.
“It’s a lot of scare for people that shouldn’t be scared about it,” Breaux said.
The National Institutes of Health, a medical research center under the U.S. Department of Health and Human Services, reported that PCOS was ranked 300th out of 324 research areas for federal funding. It only started receiving federal funding in 2022 at $9 million, increasing to $11 million in 2024.
About 70% of those affected by the disease are unaware because of the lack of steady research, said Hannah Cabre, a postdoctoral fellow at Pennington Biomedical Research Center. Her research focuses on women’s health and reproductivity, including how hormonal contraceptives influence nutrition and exercise – work that she says has made her familiar with PCOS.
“A lot of times, women will not know that they have PCOS until later in life, when they are trying to conceive or when the symptoms become a little more prominent,” Cabre said.
PCOS affects not only Cabre’s professional life, but also her personal life as she was diagnosed with it recently. Similar to other women’s experiences, she didn’t know what her irregular periods meant until an ultrasound revealed that her ovaries had cysts.
Cabre said one of the driving factors of whether women find out early is based on how severe their insulin resistance is. The severity of insulin resistance is usually measured by a significant weight gain and rapidly rising glucose levels. These symptoms are easily comparable to those who have type 2 diabetes. Because most symptoms are not considered “rapid,” Cabre said, there are fewer diagnoses and more misdiagnoses.
Coarse facial hair or dark skin coloring are other minor symptoms that Cabre said many might not attribute to PCOS.
“It could be possibly that women aren’t educated on this and don’t have the resources to look into it for themselves,” Cabre said.
Cabre and her mentor Leanne Redman have discovered that aerobic exercise is beneficial for the ovaries. Beyond anti-diabetes medications that are used to treat PCOS like metformin, she said that increasing activities such as running, biking, swimming or other exercise can help in managing symptoms.
Diet management is another step that people with PCOS should take, Cabre said. Eating low-inflammatory foods and managing carbohydrate intake can help regulate blood sugar levels to avoid a rapid spike. Cabre said women with PCOS still want to eat these foods but should space them out, almost like someone with diabetes would. Following this type of diet can help manage sugar while also increasing energy, as many women with PCOS deal with excessive fatigue.
“So right now, a lot of it is revolving around energy expenditure and how that can change with this condition,” Cabre said. “This is also looking towards how it helps reduce risks of Type 2 diabetes and cardiovascular disease.”
A lot of research still needs to be done. Over the past few years, attention has increased on PCOS, but not enough to get immediate answers, Cabre said. She anticipates that research will increase, especially because women’s health initiatives have designated a significant amount of money towards the NIH. Part of that money will be put towards research on female endocrinology and reproductive health issues like PCOS.
“I think personalized medicine is becoming a really big front within all clinical research here at Pennington,” Cabre said. “I can see in the future that PCOS is part of that.”
After her diagnosis, Scheyd started taking medication and supplements to manage her symptoms. Even so, hair continued to grow on her face and her periods remained irregular. Scheyd has to shave her face every day.
Scheyd also has struggled with weight since her diagnosis. Because of PCOS, she has to watch everything she eats including gluten, dairy and processed foods. This can all be attributed to insulin resistance. She said it’s frustrating to watch women without PCOS eat the same things, in the same portions, but not have to deal with excess weight.
Scheyd was diagnosed with anxiety while in high school, something she thinks is directly linked to her PCOS. She said beyond the hormonal imbalances affecting her moods, she worries about her fertility.
“I am in a constant state of worry about my life and future,” Scheyd said.
Biological engineering senior Anna Claire Ricks-Boyd was diagnosed with PCOS two years ago, the main indicator being that she did not start her period until she was 17 years old. She referred to her periods as “crazy irregular,” her cycles sometimes being up to 90 days apart. Other instances where they were 25, 40 or 60 days apart proved a lack of consistency, leading her to get tested.
Leading up to her periods, usually around two weeks before it started, Ricks-Boyd said that she experiences serious depressive episodes. After talking to both her doctor and therapist, she was diagnosed with premenstrual dysphoric disorder, which her therapist said is directly linked to her PCOS.
PMDD causes severe irritability, depression or anxiety in the weeks before a woman’s period. An estimated 5% of women of childbearing age have PMDD. Further symptoms include mood swings, low energy, panic attacks and more. It is usually treated with antidepressants called SSRIs, which change serotonin levels in the brain.
Ricks-Boyd takes Adderall to help manage her ADD, a medication she said clashes with Metformin. Now instead of anti-diabetes medication, she said that eating clean and taking herbal supplements has helped her a lot. Despite the positive outcome, Ricks-Boyd said that dieting like that is not sustainable as a college student.
“One of the best things that I figured out in college that has helped me is just making little swaps,” Ricks-Boyd said.
PCOS affects every aspect of food management sophomore Alexis Goodall’s daily life.
“It can mess with you a lot,” she said.
College is already a difficult time in the lives of young men and women, Goodall said that PCOS layers onto the stress and struggles. In the midst of a heavy class load, running her own dessert business and working in retail part time, she deals with mood swings, irregular sleep schedules, a lack of energy and troubles with weight and dieting every day.
“It’s hard to put into words, but it can be very draining,” Goodall said. “It takes a toll on your body, your mind and definitely my soul.”
For students at LSU struggling with PCOS, the college provides options and resources. Doctors, gynecologists and nurses like Breaux at the Student Health Center can diagnose and treat the disease all within the campus grounds.
“We check all their labs,” Breaux said, going on to describe the tests that they can do for PCOS and other problems like insulin resistance, concerning glucose levels and increased testosterone levels.
Accommodations like absence or tardy excuses for classes, note-takers, additional time or a non-classroom environment for test-taking and more are available through the Office of Disability Services. The LSU Women’s Center provides free counseling and support from other female students.
Scheyd lived in a sorority house for three years while attending LSU. Before this, she lived in a dorm with shared bathrooms. She said that this made it hard for her to go through her daily face-shaving routine, something she would do after waiting for everyone to leave the bathroom.
PCOS-friendly food options were not available at her sorority house, which made it hard for her to properly manage her food intake. This would lead her to spend more money on options from places beyond campus. She said that now that she has graduated, she has found easier ways to eat cleaner.
“Everyone has a different journey, what works for someone else may not work for you,” Scheyd said.
