Empowering Women with PCOS: Insights into Treatment Challenges and Hope

Although polycystic ovarian syndrome was discovered over ninety years ago, no FDA-approved medications are now available to treat the intricate hormonal disorder.

TFD – Delve into the world of women battling PCOS, navigating through treatment challenges and embracing hope. Gain valuable insights into the complexities of this hormonal disorder and discover empowering stories of resilience and determination. Stay informed with essential knowledge about managing PCOS effectively for better women’s health.

Jeni Gutke swallows 12 tablets in the morning. She takes fifteen more in the evening and one more before going to bed. In addition, she takes two other drugs as needed and one injectable prescription once a week.

Polycystic ovarian syndrome, or PCOS, is a complex hormonal illness that causes migraines, high blood pressure, diabetes, high cholesterol, anxiety, and depression. Gutke, 45, of Joliet, Illinois, manages these symptoms with the aid of her meds and vitamins.

In formal terms, none of Gutke’s meds are “PCOS drugs.”

A medicine designed specifically for PCOS, which is frequently associated with infertility, irregular or absent periods, weight issues, and other incapacitating symptoms, has not been authorized by the Food and Drug Administration. Gutke’s drug regimen is representative of the majority of the estimated 5 million women in the United States who have been diagnosed with PCOS.

“It’s a very extensive syndrome that impacts every part of your body, starting from your head,” she remarked. At the age of 37, she received a diagnosis of endometrial cancer, another risk associated with PCOS.

PCOS is little known despite studies on the condition and disagreements about its exact definition spanning over a century. Dr. Heather Huddleston, director of the University of California, San Francisco’s PCOS Clinic and a reproductive endocrinologist, stated that because the symptoms differ so much, it is unlikely that a single medication would be helpful for every patient.

Women with PCOS and their medical professionals say they prefer better options: cures for the underlying causes of the illness as opposed to band-aid solutions for specific symptoms. Physicians’ capacity to assist their patients has been hampered by the dearth of funding for PCOS research, despite growing calls for new therapies.

According to Huddleston, “trying to find one treatment that will work for everybody gets very messy.”

In order to treat PCOS-related symptoms, many women with the illness wind up using off-label medicines, which are technically allowed for other disorders like diabetes or obesity. It might be difficult to navigate insurance coverage for pharmaceutical drugs that are off-label.

“There’s no magic pill,” said Tallene Hacatoryan, 31, a registered dietician from Orange County, California. “There are too many components for there to be a one-size-fits-all treatment.”

Hacatoryan, who was diagnosed with PCOS at the age of 18, currently coaches people with PCOS on nutrition and lifestyle.

The most recent international guidelines suggest exercise and a balanced diet for women with PCOS, however the exact diet is still up for debate. No specific diet has been shown to alleviate symptoms, however some women have found that lifestyle coaching has been beneficial.

inadequate financial support for research

PCOS is ranked toward the bottom of the 315 medical diseases listed by the National Institutes of Health that receive federal assistance; in 2024, an estimated $10 million will be allocated for research on the condition. PCOS was so poorly financed until 2022 that the NIH list did not mention it as a separate item. Furthermore, the $100 million that the Department of Health and Human Services has announced for research into understudied areas of women’s health does not specifically address the disease. Neither is PCOS mentioned in President Joe Biden’s recent executive order to advance women’s health, which includes $200 million for NIH research grants, or the White House’s calls for Congress to allocate $12 billion to fund women’s health research.

It’s too early to tell which women’s health conditions will receive financing under the new effort, according to an NIH representative.

“The amount of funding for PCOS is proportionately extremely small given how common it is,” Huddleston stated.

The entire budget for research on a particular disease does not include financing from the government. Although it’s difficult to estimate how much money the private sector spends, experts believe that a lack of FDA-approved PCOS treatments is also a reflection of drugmakers’ lack of commitment.

A deeper comprehension of PCOS is necessary for the development of treatment options. This, in turn, requires far more research tracking thousands of women over many years, which can be extremely expensive, experts say.

Still, there are a few encouraging indicators.

While the field is still in its infancy and has only studied a small number of women, a few small pharmaceutical companies are researching potential treatments for PCOS. For example, May Health, a Menlo Park, California-based startup, is creating a one-time surgical technique that it believes may help with PCOS. A modest clinical trial using the medication tildacerfont is being conducted by San Francisco biotech company Spruce Bio for PCOS. The efficacy of the oral medication is still unknown. President and CFO Samir Gharib said larger clinical trials will depend on the company’s ability to “secure additional financing” or partner with another drug company.

Women from PCOS Challenge, an advocacy group, recently held a conference where the FDA’s experts and pharmaceutical corporations heard about their experiences from these women. No PCOS drug trials were announced after the meeting, but the FDA’s interest shows a growing push for improved treatment, said William Patterson, a spokesperson for PCOS Challenge.

There is no known treatment for PCOS.

Hormonal contraceptives, most frequently the birth control pill, are recommended by doctors to treat acne, heavy, irregular periods, and undesirable hair growth. Some claim that the medication only temporarily conceals their PCOS symptoms; once they stop using it, the symptoms return.

Treatment for PCOS focuses on treating its symptoms because it is an incurable condition, according to reproductive endocrinologist Dr. Jessica Chan of Cedars-Sinai. For some of her PCOS patients, but not all of them, Chan said birth control can be a good option.

Chan frequently administers off-label diabetic drugs such as metformin to women with PCOS whose primary concerns are insulin resistance or intractable weight gain.

Some doctors who treat PCOS, including OB-GYNs or endocrinologists, have also begun prescribing GLP-1 agonists like Ozempic and Wegovy, which have shown promise for some women with PCOS,  although studies have been small and early -stage.

The manufacturer of Wegovy and Ozempic, Novo Nordisk, stated that it currently has no intentions to apply for FDA approval for PCOS. Nevertheless, the business addresses PCOS on its Truth About Weight page as a component of its Wegovy advertising effort.

PCOS causes and symptoms

“We don’t know where PCOS originates or what causes it as a first spark,” Chan stated.

In the United States, 6% to 12% of women who are of reproductive age have PCOS. The real prevalence is likely higher since an estimated 70% of cases go undetected.

Experts generally agree that PCOS, at its core, is a hormone-related condition. Women with PCOS have higher levels of androgen hormones, which can cause a range of symptoms, including:

According to endocrinologist Dr. Andrea Dunaif, some doctors have been pushing to separate PCOS into two different diagnoses: one having more to do with the reproductive cycle and fertility issues and another having more to do with metabolism, high body weight, and diabetes.

“PCOS looks to be at least two or three different conditions we’re lumping together, but they’re genetically distinct,” said Dunaif, the chief of the endocrinology, diabetes and bone disease division of Mount Sinai Health System and the Icahn School of Medicine.

According to her, one of the reasons it’s been challenging to convince big pharma companies to fund PCOS therapy is the uncertainty around PCOS diagnosis.

According to Dunaif, the term “PCOS” is completely inaccurate because the condition is more closely related to hormone excess than actual ovarian cysts. The lumps on the ovaries that resemble cysts on an ultrasound picture are what gave rise to the term PCOS. These are not cysts, but instead egg follicles that are, as Dunaif described them, “arrested in development.”

These days, a lot of medical professionals base their diagnosis on two or three factors:

But these three factors don’t account for some of the most challenging symptoms of PCOS: insulin resistance and stubborn weight gain. Excess androgen hormones can spike insulin levels, which interferes with how the body processes sugar. Doctors aren’t sure whether the hormonal dysregulation causes insulin resistance, or whether insulin resistance causes excess androgen hormones.

Either way, women with PCOS have a higher risk of diabetes, excess weight gain, high cholesterol, and high blood pressure. Yet these metabolic conditions aren’t included in the criteria many doctors use to diagnose PCOS. The result? A missed diagnosis.

This was initially the case for 35-year-old Candice Bolden, who noticed pimples and an abundance of face and body hair a few years prior to receiving a PCOS diagnosis in 2021. Even Bolden, a lifelong dancer, lacked typical enthusiasm.

“The final straw was excess weight gain that I could not take off no matter what I did,” said Bolden, who lives in Los Angeles. “All the other things I had kind of just stuffed under the rug. I’d just chalked it up to being a hairy, Haitian woman.”

The 5-foot-2-inch Bolden, who exercised twice a day and adhered to tight diets, saw several doctors after gaining 35 pounds, but she said that they disregarded her complaints.

“The doctors kept telling me to go home, work out, and eat healthy, and that I was fine,” the woman recalled. The most annoying thing I’ve ever experienced,

“We don’t have to live under this overcast sky.”

The emergence of online networks, particularly on social media platforms such as Instagram and TikTok, has provided women with PCOS with a forum to express themselves, exchange effective treatment strategies, and connect with other women with similar conditions.

Bolden was unsure of what to do when she was eventually given a diagnosis. Hacatoryan and Gutke experienced similar things.

According to Hacatoryan, “I was like, ‘Wait, I have so many questions,’ and the doctor just told me, ‘It is what it is.'”

Hacatoryan refers to the women in her virtual group as her “cysters.”

According to Bolden, an increasing number of women are using social media to discuss their personal experiences and learn how others are managing PCOS.

She considers this antiquated belief that PCOS is largely a fertility issue, and she has been working to refute it on her own social media pages.

“My doctor told me that PCOS was the main cause of infertility when I was diagnosed, and that broke my heart,” said Bolden, who was excited to start a family and had recently gotten engaged. “I was relieved to receive a diagnosis because it proved to me that I wasn’t crazy and that something real was going on.” However, I was devastated.

Bolden relocated, found a new physician, and collaborated extensively with her spouse and the online PCOS community to develop a management plan for her PCOS symptoms.

Bolden is now expecting a female child.

“I want those who have been diagnosed with PCOS to know that there is hope and that we don’t always have to live in this dark cloud,” the woman stated.