Patient advocate: New name, new focus for a common disorder

Some things are worth waiting for.

In May, a coalition of more than 50 patient and professional organizations announced that polycystic ovary syndrome (PCOS) would henceforth be known as polyendocrine metabolic ovarian syndrome (PMOS). It took 14 years, but for women who struggle with this disorder, it will have been worth the wait.

The new name is a mouthful, but it does one important thing: It takes the focus off ovarian cysts, which were originally thought to be a source of the disorder and contributed to missed diagnoses and inadequate treatment.

The new name is intended to shift attention toward the interplay of multiple systems that influence long-term health, including the endocrine system.

The endocrine system is a network of glands and organs, including the ovaries, that produce and release hormones directly into the bloodstream, which regulate various bodily functions such as growth, metabolism and reproduction. When things go awry with the endocrine system, the symptoms can be devastating and women may suffer for years with diffuse symptoms before being diagnosed.

Symptoms of PMOS may include irregular or absent menstrual periods, excess hair growth, acne, weight gain and dark patches of skin. These symptoms can vary widely among individuals and may also include infertility and metabolic issues like insulin resistance.

Clearly, PMOS can affect a woman’s overall health — something doctors are stressing with the new name. If you’ve been diagnosed with PCOS, your diagnosis hasn’t changed — it just has a new name. But it may be worth raising other concerns with metabolic issues with your doctor, such as blood sugar, cholesterol and cardiovascular risk.

While treatment for PCOS has focused on teens and younger women of reproductive age, it’s clear that older women should also be monitored. It’s a complex, long-term hormonal or endocrine disorder that may impact health in menopause, increasing risks for insulin resistance, Type 2 diabetes, high cholesterol, cardiovascular disease and endometrial cancer.

Dr. Helena Teede, an Australian endocrinologist and researcher, led the name change process after spending decades researching the condition and seeing the patient impacts first hand.

“What we now know is that there is actually no increase in abnormal cysts on the ovary, and the diverse features of the condition were often unappreciated,” Teede said at the time of the announcement. “It was heart-breaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition.”

If you are experiencing symptoms like these, be sure to talk to your doctor. Here are some other things to know about the disorder formerly known as PCOS so you can be well-informed:

• Weight gain doesn’t always accompany polyendocrine metabolic ovarian syndrome (PMOS). This means you can have hormonal imbalances and insulin resistance even without being overweight. PMOS can be missed if weight is the only focus.

• Emerging research indicates imbalances in gut bacteria can contribute to insulin resistance and other symptoms. Eat fiber-rich fruits and vegetables and give fermented foods like kimchi and yogurt a try.

• PMOS can take a toll on emotions, bringing on anxiety, depression and sleep disruptions.

• Hormonal birth control may help manage hormones and regulate menstrual periods.

• Getting pregnant may be harder with PMOS. A fertility specialist may help.

The symptoms can be maddeningly hard to describe, let alone deal with. A private patient advocate who has a medical background might be someone who could bridge the communication gap between you and your doctor.

Just remember: PMOS instead of PCOS.

• Teri (Dreher) Frykenberg, R.N., a registered nurse and board-certified patient advocate, is the founder of NurseAdvocateEntrepreneur.com, which trains medical professionals to become successful private patient advocates. She is the author of “How to Be a Healthcare Advocate for Yourself & Your Loved Ones” and “Advocating Well: Strategies for Finding Strength and Understanding in Health Care,” available at Amazon.com. Contact her at Teri@NurseAdvocateEntrepreneur.com to set up a free phone consultation.