6 Women Share Their Experiences With PMOS — From Symptoms To Diagnosis To Management
When I saw the news that polycystic ovary syndrome (PCOS) was officially renamed polyendocrine metabolic ovarian syndrome (PMOS) this past May, I felt a validation I didn’t know I needed. The name change felt like a recognition of people like me, who have never had ovarian cysts, but struggle with a range of complicated metabolic and endocrine symptoms on a daily basis.
The medical community had been calling for a name change for years, especially because the actual criteria for PMOS diagnosis never required a patient to have ovarian cysts.
“Historically, the definition of PCOS was two out of the three Rotterdam criteria,” explained Sheeva Talebian, MD, a reproductive endocrinologist at CCRM Fertility. She broke down these criteria, which are:
- Irregular periods, including a lack of menstruation (amenorrhea) and menstruation fewer than nine times a year (oligomenorrhea).
- Elevated androgen levels, which can be detected in bloodwork and manifest physically with acne, facial hair, and male-pattern hair loss.
- Polycystic ovaries, a term that Talebian points out is a major misnomer. “Every menstrual cycle, you have a batch of follicles that sit at the top of your ovaries," she explained. “Women with polycystic ovary syndrome, by definition, have very high follicle counts—at least 12 to 15 little follicles per ovary—but not necessarily cysts.”
You might expect criteria that have been in place since 2003 to make diagnosis simple, but the many ways the condition presents still make it difficult. However, the wide variety in ways the condition presents makes it difficult. The name change is part of an effort to better recognize more of these symptoms.
“The definition of PCOS never changed, but the name changed to be more inclusive of some of the other parts of the disease,” Talebian said. For example, while glucose and insulin testing is not part of the diagnostic criteria, many women with PMOS also struggle with insulin resistance, weight gain, and changes in fat distribution.
To get a better understanding of what PMOS can look like for different people, I spoke to several women about their experience with the condition. I could have simply written about my experience, but I knew that would be underselling the various frustrations that the condition causes, and boy, was I right. These women have dealt with everything from dismissive doctors to body dysmorphia to periods heavy enough to soak through pads in less than an hour.
Read on to learn six of their stories:
Sloane, 23
Age of first period: 13
Age of diagnosis: 23
“It didn't feel that people understood where I was coming from before my diagnosis, or that my symptoms were a thing that should be treated. I feel more validated that this isn’t just ‘being a girl.’ These symptoms are real and valid, and they should be treated like a real disease.”
Sloane was misdiagnosed with endometriosis at 15 when struggling with extremely heavy, painful periods. She’s dealt with cystic acne her entire adolescence—she’s been on Accutane three times—which has made her self-conscious about her appearance, especially as a professional actor. Her symptoms have improved since starting spironolactone for her acne, doing some form of exercise seven days a week, and cutting back on alcohol since graduating from college.
Melissa, 56
Age of first period: 14
Age of diagnosis: 40
“I was 15 and I bled for like a month. Instead of having the seven days on and 23 days off type of thing, I was the opposite. I usually only had like seven days off, so they gave me some sort of hormone to regulate it, and it did. And then I just had terrible periods for my whole life. My cycle was mostly like 10 days, heavy, really crampy, huge clots, that type of period, you know.”
Melissa struggled with terrible periods her entire life. She always carried a little extra weight and noticed hair on her face, but wasn’t diagnosed until she took her daughter to the dermatologist for cystic acne. The doctor noticed their similar physical symptoms, and told them she suspected PMOS, suggesting they go to an endocrinologist to confirm. Both Melissa and her daughter were diagnosed with PMOS in the following months. Since then, she’s lost over 30 pounds through a mix of lifestyle factors and medication: first, metformin, and now a microdose of a GLP-1.
Varsha, 34
Age of first period: 13
Age of diagnosis: 26
"While there's a lot of information about PMOS out there now, getting the diagnosis is really hard. It took me a decade because it was the perfect storm at the time. I had different types of symptoms and I knew something was off. But because doctors are so diagnostic with criteria, people get delayed diagnosis. People need to talk more about how to advocate for yourself in the medical space.”
Varsha’s heavy, irregular periods made her suspect she had PMOS starting at age 16, but doctors dismissed her because she didn’t present with many of the classic physical symptoms. After noticing substantial hair shedding,which doctors also dismissed because, like many South Asian women, she still had thick hair, she pushed for a hormonal panel that showed elevated androgens and she was officially diagnosed with PMOS at 26. She considers the diagnosis her wake-up call to change her lifestyle. She reduced the intensity of her workouts to prevent her cortisol from spiking and began lifting instead. In terms of nutrition, she began meal-prepping to keep her diet more consistent, which included an increase in her protein and omega-3 intake. She recently gave birth to a healthy baby boy, whom she conceived naturally with help from the Inito fertility tracker. She has also become a public advocate for PMOS awareness, specifically within the South Asian community.
Molly, 22
Age of first period: 12
Age of diagnosis: 19
“I'm out of college, and I'm like a real person trying to find time to exercise and eat healthy while I'm working full time, which has been so difficult. But I feel like I'm in a really good spot right now, and I'm really grateful for that.”
After a period of abnormal weight gain and hair growth in 2023, Molly’s mom took her to the doctor, where Molly was diagnosed with PMOS based on her bloodwork. She began Yasmin, a high estrogen oral birth control pill to help manage her symptoms, but still struggled with insulin resistance. When her A1C rose to prediabetic levels, she tried metformin, but it didn’t make a dent. In the last three years, she has finally seen improvement through a balance of medication and lifestyle changes, including cutting out alcohol, being mindful about healthy eating habits, and getting into running through Orangetheory and even competing in some races.
Stephanie, 41
Age of first period: 13
Age of diagnosis: 29
“Growing up in the dance world where your body is your instrument, you’re constantly looking in the mirror and being critiqued, even from the best teachers. And then also having this struggle with PMOS, even when I didn't know that I had it… I definitely have some form of body dysmorphia. I'm constantly stressing about my body, which is also not helpful when trying to get better.”
Stephanie has spent her entire life struggling with heavy and irregular periods, abnormal hair growth, and metabolism changes. Birth control gave her anxiety and made her gain a significant amount of weight, but it was the only thing doctors offered to help her symptoms. Growing up as a dancer, the lack of control she had over her physical appearance contributed to her sense of body dysmorphia. Stephanie recently froze her eggs, and she had to meticulously plan out the process with her doctors because she doesn’t get a regular period. Rather than simply doing the injections, she had to work backward from her retrieval date and start birth control pills to control when she would be ovulating. Luckily, the process was successful.
Emily, 57
Age of first period: 11
Age of diagnosis: 29
“I was really struggling to lose the pregnancy weight and I had seen an article that suggested taking metformin. When I went to my gynecologist (who I’d been with since I was 16) and showed him the article, he was like, 'Oh, Emily, just shut your mouth.' He wasn't very nice about it. I loved him, but I thought, ‘I'm not coming back to you if that's how I'm going to be treated.’”
Emily always had irregular, heavy periods, but wasn’t diagnosed with PMOS until she saw her gynecologist when trying to conceive/ It took Emily just one month of Clomid to get pregnant with her first child, but she spent a year trying to get pregnant with her second. She stopped taking Clomid after six months and conceived naturally as her body re-regulated itself. She has since taken metformin to help with insulin resistance and took birth control to regulate her periods before reaching menopause.
The takeaway
All of these women had different paths to being diagnosed with PMOS, and saw symptoms of the condition manifest differently throughout their lives. The one thing they all shared is that their journeys were never straightforward—there is no one cure-all for the hormonal imbalance, metabolic issues, and emotional turmoil that PMOS can cause.
But that doesn’t mean there is no treatment. The rise of GLP-1 drugs, especially for conditions beyond obesity, is promising for a condition like PMOS with such strong metabolic components. Tangible changes can also be seen from habits you can integrate into your everyday life, that don't require a prescription. Frequent exercise, high-protein and low-sugar meals, and a consistent routine can all make real differences.