By Caroline Hopkins -
NBC News
Every morning, Jeni Gutke takes 12 pills. At night, she takes 15 more, and another before bed. She also receives an injectable medication once a week and twice a week when she needs it.
Gutke, of Joliet, Illinois, suffers from Polycystic Ovary Syndrome (PCOS), and medications and supplements help the 45-year-old woman cope with the migraines, hypertension, diabetes, high cholesterol, anxiety and depression that come with this complex hormonal disease. .
None of Gutke's medications are technically “PCOS medications.”
Jeni Gutke has spent much of her adult life dealing with health issues related to Polycystic Ovary Syndrome.Courtesy Jeni Gutke
The U.S. Food and Drug Administration has not approved any specific medications for PCOS, which is often associated with infertility, irregular or no periods, weight problems and other debilitating symptoms. The range of medications Gutke takes is typical of the 5 million women diagnosed with Polycystic Ovary Syndrome in the United States.
“It is such a broad syndrome that it affects everything from the head to the toes,” he said. Gutke was diagnosed with endometrial cancer – another risk associated with PCOS – at age 37.
After nearly a century of disagreement over what exactly defines this disorder and a lack of research, PCOS remains poorly understood.
Symptoms vary so much that a single drug is unlikely to help all patients
, said Dr. Heather Huddleston, a reproductive endocrinologist at the University of California, San Francisco and director of the UCSF PCOS Clinic.
Women with PCOS and the doctors who care for them say they want better options: treatments for the root causes of the disorder rather than bandages for individual symptoms. Despite growing demand for better treatments, a lack of investment in PCOS research has limited doctors' ability to help their patients.
“It's very difficult to find a treatment that works for everyone,” Huddleston said.
Tallene Hacatoryan works as a lifestyle counselor to help women manage PCOS symptoms.Courtesy Tallene Hacatoryan
Many women with PCOS end up taking other medications – that is, drugs technically approved for other conditions, such as diabetes or obesity – to relieve PCOS-related symptoms. Dealing with insurance and getting prescriptions for these medications can be quite a challenge.
“There is no magic pill,” said Tallene Hacatoryan, 31, a registered dietitian in Orange County, California. “There are too many components for there to be a single treatment,” she said.
Hacatoryan was diagnosed with PCOS at age 18 and now works as a diet and lifestyle coach for women who suffer from it.
Although research is confusing when it comes to the best diet for women with PCOS, the most up-to-date international guidelines recommend exercise and a healthy diet. There is no evidence that any particular diet improves symptoms, although some women have found lifestyle advice helpful.
Insufficient funds for research
Among the 315 medical conditions receiving federal support from the National Institutes of Health (NHI), PCOS ranks near the bottom, with an estimated $10 million going to research in 2024. Through 2022, the SOP received so little funding that it was not included on the National Institutes of Health list. And the disease is not explicitly included in the $100 million the Department of Health and Human Services recently announced to research neglected areas of women's health.
After almost a century of disagreements over the exact definition of this disease and a lack of research, PCOS remains poorly understood. Leila Register/NBC News; Getty Images
PCOS is also not mentioned in President Joe Biden's recent executive order to promote women's health, which includes $200 million for research grants at the NIH, or in the White House's calls for Congress to allocate $12 billion to fund research on women's health.
An NIH spokesperson said it is too early to know which women's diseases will receive funding under the new initiative.
“Given how common PCOS is, the amount of funding it has received is proportionately very small,” Huddleston said.
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Public funding is only part of the total research budget for a given disease. Although it's difficult to pin down a dollar figure for private industry spending, experts say
the lack of FDA-approved PCOS treatments also reflects a lack of investment
by drug makers.
Developing treatments for PCOS requires a better understanding of the disease. This, in turn, requires much more research following thousands of women over many years, which can be extremely expensive, experts say.
However, there are some promising signs.
Although the research is nascent and has only been done on a few dozen women, there are a handful of small pharmaceutical companies studying potential treatments for PCOS. A Menlo Park, California, company called May Health, for example, is developing a unique surgical procedure that it believes could help combat the condition. Spruce Bio, a San Francisco biotechnology company, is conducting a small clinical trial with a drug called tildacerfont for PCOS. It is not yet clear whether oral medicine works. Samir Gharib, its president and chief financial officer, stated that conducting larger clinical trials will depend on the company's ability to “raise additional financing” or partner with another pharmaceutical company.
The FDA recently attended a meeting with the PCOS Challenge group, where women shared their experiences with agency scientists and pharmaceutical companies. No PCOS drug trials were announced after the meeting, but the FDA's attention highlights growing interest in improving treatment, according to William Patterson, PCOS Challenge spokesman.
There is no known cure for PCOS
Doctors recommend hormonal contraceptives – most commonly the birth control pill – to regulate heavy and irregular periods, acne, and unwanted hair growth. Others claim that taking
the pill only masks, rather than treats, the symptoms of PCOS
, and that symptoms return as soon as the pill is stopped.
“Unfortunately, PCOS has no cure, so treatment involves managing symptoms,” said Dr. Jessica Chan, a reproductive endocrinologist at Cedars-Sinai. Chan stressed that birth control may be a good option for some, but not all of her PCOS patients.
For women with PCOS whose main concerns are insulin resistance or persistent weight gain, Chan often prescribes diabetes medications such as metformin.
Some doctors who treat PCOS, such as obstetrician-gynecologists or endocrinologists, have also begun prescribing GLP-1 agonists such as Ozempic and Wegovy, which have shown promise for some women with PCOS, although the studies have been small and are in their early stages. initial.
Novo Nordisk, the company that makes Ozempic and Wegovy, has stated that it does not currently plan to obtain FDA approval to treat PCOS. However, the company mentions PCOS on its Truth About Weight website, which is part of its Wegovy marketing campaign.
Causes and symptoms of PCOS
“We don't know what the initial factor is that gives rise to Oolicystic Ovarian Syndrome or where it arises from,” Chan said.
PCOS is estimated to affect 6% to 12% of women of reproductive age in the United States. The actual prevalence is probably higher, since it is estimated that 70% of cases go undetected.
Experts generally agree that
PCOS is a hormonal disorder
. Women with the disease have higher levels of androgen hormones, which can cause a series of symptoms, including:
Absence, irregularity or abundance of menstruation.
Acne.
Excessive hair growth on the face or body.
Thinning or hair loss.
According to endocrinologist Dr. Andrea Dunaif, some doctors have been pushing to separate PCOS into two different diagnoses: one that has more to do with the reproductive cycle and fertility issues and another that has more to do with metabolism, weight elevated body weight and diabetes.
“Polycystic ovary syndrome appears to be made up of at least two or three different diseases that we are grouping together, but they are genetically distinct,” explained Dunaif, chief of the division of endocrinology, diabetes and bone diseases at the Mount Sinai Health System and the Icahn School of Medicine.
The confusion surrounding the diagnosis of PCOS is, in part, why it has been difficult to get big pharmaceutical companies to invest in treating the disease, he said.
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In Dunaif's opinion, it is not accurate to call this disorder “Polycystic Ovary Syndrome,” because it has more to do with excess hormones than with the existence of cysts in the ovaries. PCOS gets its name from the lumps on the ovaries that appear as cysts on an ultrasound. They are not cysts, but ovarian follicles that are, as Dunaif described them, “arrested in their development.”
Still, many doctors
diagnose the condition based on two of three factors
:
Irregular periods.
Elevated androgen levels.
Multiple follicles in the patient's ovaries.
But these three factors don't explain some of the most difficult symptoms of PCOS: insulin resistance and persistent weight gain. Excess androgen hormones can trigger insulin levels, which interferes with the way the body processes sugar. Doctors are not sure if hormonal dysregulation causes insulin resistance, or if insulin resistance causes excess androgen hormones.
In any case, women with PCOS are at greater risk of suffering from diabetes, overweight, hypercholesterolemia and hypertension. However, these metabolic disorders are not included in the criteria that many doctors use to diagnose PCOS. What's the score? An erroneous diagnosis.
This was initially the case for Candice Bolden, 35, who began noticing acne and excess facial and body hair several years before she was diagnosed with PCOS in 2021. Bolden, a lifelong dancer, also had unusually energetic low.
Candice Bolden said she wants to raise awareness that PCOS is not just a fertility problem.Courtesy Candice Bolden
“The last straw was the excessive weight gain, which I couldn't get rid of no matter what I did,” explains Bolden, who lives in Los Angeles. “All the other things I had swept under the rug. She attributed it to being a hairy, Haitian woman.”
After gaining 35 pounds, Bolden, who is 5.2 feet tall, exercises twice a day and follows a strict diet, went to several doctors who she says ignored her symptoms.
“The doctors kept telling me I was fine, to go home, exercise and eat healthy,” she explained. “It was the most frustrating thing in my life.”
We don't have to live under this black cloud
Women living with PCOS say the rise of online communities, including on social media like TikTok and Instagram, has given them a place to talk, share treatment approaches, and meet other women with PCOS.
When Bolden finally received a diagnosis, he didn't know what to do next. Gutke and Hacatoryan had similar experiences.
“I was like, 'Wait, I have a lot of questions,' and the doctor just told me, 'It is what it is,'” Hacatoryan said.
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Hacatoryan calls the women in her online community her
cysters
.
Bolden said more and more women are turning to social media to learn how others are dealing with their PCOS and to share their own stories.
On her social media accounts,
she has attempted to change the idea that PCOS is primarily a fertility problem
, a perception she considers outdated.
“When I was diagnosed, my doctor said that Polycystic Ovary Syndrome was the main cause of infertility, and that devastated me,” said Bolden, who at the time was in a relationship and eager to start a family. “I was glad they diagnosed me, because he showed me that something was happening and that I wasn't crazy. But my heart broke.”
Things changed after Bolden moved, found a new doctor, and worked closely with her husband and the PCOS online community to find a system to help manage her PCOS symptoms.
She is now pregnant and expecting a girl.
“I want people who have been diagnosed with Polycystic Ovary Syndrome
to know that there is hope and that we do not have to always live under this black cloud
,” he stressed.