A panel of experts convened by the National Institutes of Health said today (Jan. 23) that polycystic ovary syndrome (PCOS) should be renamed
.
The current name is confusing, the panel said, because women don't need
to have ovarian cysts to have PCOS, and the presence of cysts alone is
not enough to diagnose the disorder. In some cases, such confusion may
delay a diagnosis of PCOS.
.
The current name is confusing, the panel said, because women don't need
to have ovarian cysts to have PCOS, and the presence of cysts alone is
not enough to diagnose the disorder. In some cases, such confusion may
delay a diagnosis of PCOS.
"The
name PCOS is a distraction that impedes progress. It is time to assign a
name that reflects the complex interactions that characterize the
syndrome," panel member Dr. Robert A. Rizza, a professor of medicine at
the Mayo Clinic, said in a statement. "The right name will enhance
recognition of this issue and assist in expanding research support."
Polycystic
ovary syndrome is caused by imbalances in sex hormones, including the
female hormone estrogen and the male hormone androgen. Women with PCOS
can experience menstrual irregularities, cysts on the ovaries, acne,
weight gain anddifficulty getting pregnant. The condition also increases the risks of Type 2 diabetes, high cholesterol and high blood pressure. [See Acne in Women Can Signal Hormone Problems.]
Because so many symptoms are associated with the syndrome, unsuspecting
women may first visit a gynecologist, a dermatologist, or an internist.
. The condition also increases the risks of Type 2 diabetes, high cholesterol and high blood pressure. [See Acne in Women Can Signal Hormone Problems.]
Because so many symptoms are associated with the syndrome, unsuspecting
women may first visit a gynecologist, a dermatologist, or an internist.
Lisa
Benjamini-Allon, founder and president of the PCOS Foundation, a
patient advocacy organization, said she felt a name change is necessary.
The current name "doesn't do the syndrome justice for what it is,"
Benjamini-Allon said. A lot of women who are diagnosed with PCOS say
they feel the name should be changed because it doesn't capture the
difficulties associated with the condition, she said. (If the name of
the condition were changed, Benjamini-Allon said her organization would
probably have to change its name as well.)
Liz
Medcalf, a PCOS patient from Frostburg, Md., said she likes the idea of
a name change. Medcalf was not told she had PCOS until after she
underwent a hysterectomy at age 42. "I think the current name poorly
reflects the entire disease and probably played a part in my late
diagnosis," Medcalf said. In her 20s, Medcalf developed symptoms of the
condition, including irregular periods, weight gain, and facial and body
hair, she said. Her hysterectomy was a treatment for endometriosis.
Patients themselves may have misperceptions about their disorder because of the name.
"Patients
read into the name and just think, 'Okay, this is about my ovaries,
it's really not about anything else,'" said Dr. Melissa Goist, an
obstetrician and gynecologist at Ohio State University's Wexner Medical
Center. But from a doctor's perspective, the most worrisome aspects of
the disorder are the long-term consequences, such as diabetes, Goist
said.
Patients
also may believe they cannot become pregnant with the disorder. While
pregnancy with PCOS can be more difficult, it is by no means impossible,
Goist said.
Some
patients expressed frustration with a lack of recogniction of the
disease in the wider medical community. Dionne, a PCOS patient in
Boston, said that on many occasions, she had to explain her condition to
her health care provider. "They don’t fully no what it is … unless
they're working with it," Dionne said. "I think a better name would be
helpful in terms of communication," between doctors and patients, Dionne
said. Dionne did not want her full name used for privacy reasons.
However, not everyone agrees with the idea of a name change.
"Although
the terminology is not entirely accurate, I believe it is a mistake to
rename the syndrome," said Megan Joyce, an acupuncturist in Los Angeles
who has PCOS. "A community of women has formed around the term 'PCOS'
that provides support, advice and solidarity. I believe finding a new
name would create stratification within the community that would lend
confusion to an already confusing medical condition."
Although
the NIH panel members did not offer a new name, they said it should be a
broader name that recognizes the condition's other features, including infertility and an excess of androgen hormones.
and an excess of androgen hormones.
The
panel hoped it would be possible to assemble a group, including
representatives from professional societies and patient advocacy
organizations, to decide upon a new name, said panel member Dr. Timothy
Johnson, chairman of the Department of Obstetrics and Gynecology at the
University of Michigan. In theory, this could be a quick process,
Johnson said.
The
panel also recommended additional research to understand the underlying
causes of the hormonal imbalance, as well as factors that can trigger
the disease or make it worse.
