Ten million women have this disease, and more than half will go undiagnosed. Ten percent of all U.S. women have the disease. It is a spectrum, easy to treat, non-life-threatening and typically diagnosed between the adolescent years, 14-26, with it most often being found in college-aged women.
It is Poly-Cystic Ovarian Syndrome PCOS. Because women do not know the symptoms, this and other diseases often get overlooked and are left undiagnosed.
Lisa*, a junior, HHP major at UTM, was diagnosed very early, when she was 14. She went to see her pediatrician first after her mother noticed changes.
“She saw me gaining a lot of weight without eating that much. On top of that, I was not ‘regular’ for many months at a time. My pediatrician ended up referring me to an endocrinologist,” Lisa* said.
Elizabeth Lund, a gynecologist in Martin, says that having an irregular menstrual cycle is one of the first signs that clues women in on something not being right.
“In order to diagnose PCOS, a complete history and physical should be obtained with particular attention to [the patient’s] periods, weight gain, acne, abnormal hair growth, and family history,” Lund said.
Because the disorder has a wide spectrum of symptoms, different treatments may occur, and not all women discover their problems the same way.
Caitlin*, a UTM alumna and now staff member, says she was diagnosed later in life, having been officially diagnosed at age 24.
“I’ve always had issues with my cycle. In sixth grade it was… a ton of pain and then I’d miss a few months. Women in my family have endometriosis, but when I went to the doctor there were no solutions. I would be offered birth control and pain relievers. I was told it was part of having a period, and I wasn’t often treated,” she said.
“I would say an odd [symptom] is that I get a lot of skin tags and extreme leg hair, all the time. But most notably was going to the emergency room for cysts and pain.”
Caitlin said she was in the ER as close as a month before diagnosis. Once she was diagnosed it was time to find a treatment. Though not all women present with cysts, they are the name-sake for the disease and an obvious sign of an imbalance.
Because PCOS often affects physical health and is a contributing factor for diabetes and endometrial cancer or infertility, Lund advises women to treat in a multi-step manner.
“Maintaining an ideal body weight often results in normal cycles and improvement in fertility. When this is not enough to cause symptoms to subside, medication can be used. The typical medications are medications to lower the insulin level, oral contraceptives and medications to decrease hair growth.”
For Macy,* a freshman Social Work major at UTM, her low-carbohydrate diet has mostly helped her to control the ovarian pain she was experiencing before her treatment began, though it comes with a cost.
“I’m not able to eat what I crave. I know I have to do the [diet] for my well-being… I want to be able to have children and live a good happy life,” she said.
Lund says that by definition PCOS is an endocrine disorder.
“[It] causes problems with the metabolism of glucose, hormonal imbalances, infertility,
and problems with menses and can cause diabetes.”
However, surgery really isn’t the best option, contrary to popular belief. “A hysterectomy is not a solution for PCOS.
A hysterectomy would be considered in patients who continue to have heavy abnormal uterine bleeding despite all medical treatments. This would be a very rare situation,” Lund said.
Some women do form cysts that become too large for a doctor’s comfort-levels, and
concerns arise for ovarian torsion. However, this is not typical, and often the cysts can easily be surgically removed.
Macy* has even had a cyst removed before she was diagnosed.
“I had a cyst removed at the age of 14 and then felt the same pain just before being diagnosed. I went for an ultrasound, and the doctors explained.”
Her most common symptom now that she has begun treatment is an upset stomach. This is common for people taking Metformin and other insulin-lowering medications and can often be combatted with a strict diet regiment.
PCOS, at the surface, can sound intimidating to young women, but that fear should not stop anyone experiencing symptoms to avoid being checked.
“Don’t be afraid to be that girl that’s hurting. It’s more than a painful period. It’s okay to get that checked out. Don’t be afraid to seek somebody and keep going until somebody listens,” Caitlin* says.
She might be part of the 10 percent, but she is no longer part of the undiagnosed.
*Names have been changed to protect the identity of students
Pacer Photo/Rachel Moore
