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PCOS symptoms are still difficult for doctors to diagnose and treat. Here's why.

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Women's Health


PCOS SYMPTOMS ARE STILL DIFFICULT FOR DOCTORS TO DIAGNOSE AND TREAT. HERE'S WHY.

Polycystic ovary syndrome was first identified some 90 years ago, yet there are
no FDA-approved drugs to treat the complex hormonal condition. 

After nearly a century of disagreements over what, exactly, defines the
condition, as well as a lack of research, PCOS is still poorly understood. The
symptoms are so varied that any single drug would be unlikely to help all
patients, doctors say.Leila Register / NBC News; Getty Images
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March 31, 2024, 1:00 PM GMT+2
By Caroline Hopkins

Every morning, Jeni Gutke swallows 12 pills. In the evening, she takes 15 more,
then another before bed. She also takes an injectable medication once weekly,
and two other medications as needed.

Gutke, of Joliet, Illinois, has polycystic ovary syndrome, or PCOS, and the
medications and supplements help the 45-year-old cope with migraines, high blood
pressure, diabetes, high cholesterol, anxiety and depression that come with the
complex hormonal condition. 




Not one of Gutke’s medications are technically “PCOS drugs.” 

Jeni Gutke has been navigating PCOS-related health conditions for much of her
adult life.Courtesy Jeni Gutke

The Food and Drug Administration has not approved a medication specifically for
PCOS, which is often linked to infertility, irregular or missed periods, weight
problems, and other debilitating symptoms. Gutke’s array of medications is
typical of how many of the estimated 5 million women in the U.S. diagnosed with
PCOS deal with it.“It’s such a vast syndrome that affects everything from your
head to your toes,” she said. She was diagnosed with endometrial cancer —
another risk linked to PCOS — at age 37. 

After nearly a century of disagreements over what, exactly, defines the
condition, as well as a lack of research, PCOS is still poorly understood. The
symptoms vary so widely that any single drug would be unlikely to help all
patients, said Dr. Heather Huddleston, a reproductive endocrinologist at the
University of California, San Francisco and director of UCSF’s PCOS Clinic. 

Women with PCOS and the doctors who care for them say they want better options —
treatments for the condition’s root causes rather than bandages for individual
symptoms. Even as calls for better treatments grow, the lack of investment in
PCOS research has limited doctors’ ability to help their patients. 


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“It gets very messy to try to identify one treatment that’s going to work for
everybody,” Huddleston said. 

Many women with the condition end up taking off-label prescriptions — meaning
drugs technically approved for other conditions, like diabetes or obesity — to
help PCOS-related symptoms. Navigating insurance coverage for off-label
prescriptions can be challenging.

“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.”

Tallene Hacatoryan does lifestyle coaching to help women manage their PCOS
symptoms.Courtesy Tallene Hacatoryan

Hacatoryan was diagnosed with PCOS at age 18 and now works as a diet and
lifestyle coach for women with PCOS.  Although research is murky 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’s no evidence that any
particular diet improves symptoms, although some women have found lifestyle
coaching helpful.


INSUFFICIENT FUNDING FOR RESEARCH

Among the reported 315 medical conditions that receive federal support from the
National Institutes of Health, PCOS ranks near the bottom, with an estimated $10
million earmarked for research in 2024. Until 2022, PCOS was so underfunded that
it wasn’t included as a line item in the NIH list. And the condition is not
explicitly included in the $100 million the Department of Health and Human
Services announced recently to research neglected areas of women’s health.
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.

A spokesperson at the NIH said that it’s too early to know which women’s health
conditions will receive funding under the new initiative. 



“Given how common PCOS is, the amount of funding it’s gotten is proportionately
extremely small,” Huddleston said. 

Government funding is just one part of the total research budget for a given
disease. While it’s tough to pin down a dollar figure for private industry
spending, experts say the lack of FDA-approved PCOS treatments reflects a lack
of investment from drugmakers, too. 

Developing PCOS treatments requires a better understanding of the condition.
This, in turn, requires far more research tracking thousands of women over many
years, which can be extremely expensive, experts say. 

However, there are some promising signs.

Although research is early and only in a few dozen women, there are a handful of
small drug companies studying possible PCOS treatments. A Menlo Park,
California-based company called May Health, for instance, is developing a
one-time surgical procedure it thinks could help with PCOS. Spruce Bio, a San
Francisco biotech firm, is running a small clinical trial with a drug called
tildacerfont for PCOS. It is not clear yet if the oral drug works. 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. 


MORE WOMEN'S HEALTH NEWS


THE FDA RECENTLY ATTENDED A MEETING WITH ADVOCACY GROUP PCOS CHALLENGE WHERE
WOMEN SHARED THEIR EXPERIENCES WITH THE AGENCY’S SCIENTISTS AND DRUG COMPANIES.
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.NO KNOWN CURE FOR PCOS

Doctors recommend hormonal contraceptives — most commonly the birth control pill
— to regulate heavy, irregular periods;, acne;, and unwanted hair growth. Others
say taking the pill just masks, rather than treats, their PCOS symptoms and the
symptoms return as soon as they stop taking it. 



“PCOS is unfortunately not curable, so treatment is about managing its
symptoms,” said Dr. Jessica Chan, a reproductive endocrinologist at
Cedars-Sinai. Chan said birth control can be a good option for some, but not
all, of her PCOS patients. 

For women with PCOS whose main concerns are insulin resistance or stubborn
weight gain, Chan often prescribes off-label diabetes medications like
metformin. 

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.

Novo Nordisk, the company that makes Ozempic and Wegovy, said it has no plans as
of now to seek FDA approval for PCOS. Still, the company mentions PCOS on its
Truth About Weight website, part of its marketing campaign for Wegovy


CAUSES AND SYMPTOMS OF PCOS

“We don’t know the initial spark leading to PCOS or where it arises from,” Chan
said.

PCOS affects an estimated 6% to 12% of reproductive-age women in the U.S. 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:

Missing, irregular, or heavy periods

Acne

Excess hair growth on the face or body

Thinning or balding scalp hair

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.

The confusion surrounding PCOS diagnosis is partly why it’s been hard to get
large pharmaceutical companies to invest in PCOS treatment, she said.

In Dunaif’s view, it’s not accurate to call the condition “PCOS” at all, because
it has more to do with excess hormones than it does with actual cysts on the
ovaries. PCOS got its name from the bumps on the ovaries appearing like cysts on
an ultrasound image. These are not cysts, but instead egg follicles that are, as
Dunaif described them, “arrested in development.” 

As it is, many doctors diagnose the condition based on two of three factors:

Irregular periods

High androgen levels



Multiple follicles on the patient’s ovaries

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 Candice Bolden, 35, who started 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 low energy.  

Candice Bolden says she wants to raise awareness that PCOS is not just a
fertility issue.Courtesy Candice Bolden

“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.”After gaining 35 pounds, the 5-foot-2-inch Bolden, who exercised twice a
day and followed strict diets, saw multiple doctors who she said ignored her
symptoms. 

“Doctors kept telling me I was fine, and to go home, work out, and eat clean,”
she said. “It was the most frustrating thing ever.”


‘WE DON’T HAVE TO LIVE UNDERNEATH THIS DARK CLOUD’

Women living with PCOS say the rise of online communities, including on social
media apps like TikTok and Instagram, has given them a place to speak out, share
the treatment approaches working for them, and meet other women with PCOS. 



When Bolden finally got a diagnosis, she wasn’t sure what to do next. Gutke and
Hacatoryan had similar experiences. 

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

Hacatoryan calls women in her online community her “cysters.”

Bolden said she’s noticed more women turning to social media to learn how others
manage their PCOS and share their own stories.

On her own social media accounts, she’s been trying to change the narrative
about PCOS being primarily a fertility problem, which she sees as an outdated
perception.



“When I was diagnosed, my doctor mentioned PCOS being the No. 1 reason for
infertility, and that shattered me,” said Bolden, who was newly engaged at the
time and eager to start a family. “I was happy I was diagnosed, because it
showed me something was actually happening and I wasn’t just crazy. But I was
heartbroken.”

Things changed after Bolden moved; found a new doctor; and worked closely with
her husband and the online PCOS community to find a system that worked to manage
her PCOS symptoms.  

Bolden is now pregnant and expecting a baby girl. 

“I want people diagnosed with PCOS to know there’s hope, and we don’t have to
live underneath this dark cloud all the time,” she said.

Caroline Hopkins

NBC News contributor Caroline Hopkins is a health and science journalist who
covers cancer treatment for Precision Oncology News. She is a graduate of the
Columbia University Graduate School of Journalism.  



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