It was first described in the 1930s: A strange condition affecting women that caused enlarged ovaries, missed periods and infertility. First called Stein-Leventhal syndrome after the doctors who discovered it, it was eventually renamed polycystic ovary syndrome (PCOS) after the small ovarian cysts, like a strand of pearls, that many women with the disease have.
Doctors now know that, rather than an infertility issue alone, PCOS is a full-blown hormone disorder. But much about PCOS remains mysterious even after decades of research and despite the fact that millions of women have it and that it’s a leading cause of infertility. Even its name is confusing, since PCOS may not always lead to the ovarian cysts it was named after.
This lack of knowledge about PCOS in the medical community means it can take years for women to be diagnosed.
For Tanya Mauldin, diagnosis took a year of countless blood tests and visits with specialists, until at last an ultrasound revealed cysts on her ovaries. At that time, she was only menstruating once a year.
PCOS diagnosis is tricky
Mauldin has had irregular periods since her teenage years and didn’t think anything of it. Doctors had told her irregularity was common among young women. It wasn’t until she started losing energy and feeling off that she knew something was wrong.
To be diagnosed with PCOS, a woman must have two of three key symptoms: ovarian cysts, irregular or absent periods and elevated levels of so-called male hormones known as androgens. That means a woman can have no cysts but still be diagnosed with PCOS once other conditions have been ruled out.
Symptoms vary among women. The disease often causes insulin resistance, so many women gain significant amounts of weight even if they haven’t changed their diet or exercise routine. Other women don’t gain weight and may not even have many noticeable symptoms. This variability often leads to a tedious diagnosis process and makes some medical professionals question how best to treat the condition.
“We need to compare apples to apples, but some women have strong metabolic issues while others primarily have high male hormones. Some have both. Should we treat all these women the same way?” says Judy Simon, R.D.N., a clinical dietitian at the University of Washington Medical Center–Roosevelt who works with PCOS patients.
The struggle of infertility
Mauldin first became Simon’s patient when she wanted to optimize her diet and increase her chances of getting pregnant. For women with PCOS, particularly those who have insulin resistance, nutrition can play a major role in fertility and whether or not the pregnancy is healthy, says Simon.
Once Mauldin stopped taking the birth control pills she used to regularize her periods and help with symptoms, her period became irregular again. She tried to get pregnant for six months without success.
Her doctor eventually increased her dose of metformin, a drug used to combat insulin resistance, to a high dose of 3,000 mg per day. While this increased Mauldin’s chances of ovulating, it came with unpleasant and life-interfering symptoms like chronic diarrhea that was often triggered by fiber-rich but healthy foods like vegetables, which she was supposed to be eating more of.
It was a delicate balance between finding the most effective way to increase her chance of being a mom without compromising her health. Finally, Mauldin decided to try intrauterine insemination (IUI), a procedure that involves injecting sperm directly into the uterus. Since she still wasn’t ovulating regularly, she began taking medication to help kick-start ovulation. After an ultrasound confirmed that she had viable eggs, she underwent the procedure.
Mauldin successfully gave birth to her son, George, a year and a half ago. Her pregnancy was healthy and uncomplicated. She wasn’t able to breastfeed because she couldn’t produce enough milk, which was hard for her to accept. But she feels lucky that she was able to have a baby at all, since many women with PCOS can’t.