Jeni Gutke takes 12 pills every morning. She takes 15 more in the evening and one more right before bed. She also gets an injection once a week and takes two other medicines as needed.
Gutke, 45, from Joliet, Illinois, has polycystic ovary syndrome (PCOS), which causes migraines, high blood pressure, diabetes, high cholesterol, anxiety, and sadness. The 45-year-old takes medications and supplements to help her deal with these symptoms.
Gutke doesn’t take any medicines that are officially “PCOS drugs.”
The Food and Drug Administration has not approved a drug, especially for PCOS. PCOS is often linked to infertility, weight problems, irregular or missed periods, and other symptoms that make it hard to do things. Many of the 5 million women in the U.S. who have been identified with PCOS, like Gutke, deal with it by taking a variety of medications.
“From your head to your toes, it affects everything,” she said. At age 37, she was told she had uterine cancer, which is another risk that is linked to PCOS.
PCOS is still not well known, even though there have been arguments for almost 100 years about what the condition really is and not enough research has been done. The symptoms are so different that Dr. Heather Huddleston, a reproductive endocrinologist at the University of California, San Francisco and head of the PCOS Clinic at UCSF, said that no single drug would likely help all of her patients.
Women with PCOS and the doctors who treat them say they want better options—different ways to treat the condition’s main reasons instead of just covering up its symptoms. Doctors can’t help their PCOS patients as much as they’d like to because study into the condition isn’t getting enough funding.
Huddleston said, “It gets very messy to try to find one treatment that will work for everyone.”
Many women with PCOS end up taking drugs that are legally approved for other conditions, like diabetes or obesity, to help with their symptoms. This is called “off-label prescriptions.” It can be hard to figure out how to get insurance to cover medicines that aren’t on the label.
“There’s no magic pill,” said Tallene Hacatoryan, a qualified dietitian from Orange County, California, who is 31 years old. “The treatment can’t be the same for everyone because there are too many facets.”
Hacatoryan was 18 years old when she was told she had PCOS. She now helps people with PCOS with their diets and lifestyles.
It’s not clear what the best diet is for women with PCOS, but the most recent worldwide guidelines say they should exercise and eat well. There is no proof that any one diet can help with symptoms, but lifestyle advice has worked for some women.
