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What's it like to be diagnosed and live with Polycystic Ovary Syndrome?

Polycystic Ovary Syndrome (PCOS) affects one in ten women. Women with PCOS often struggle to get pregnant and experience other health complications, but it's not an automatic infertility diagnosis. September is PCOS Awareness Month, and we set out to learn about the diagnosis, symptoms, self-care, and—you guessed it—fertility challenges from women who live with this common condition.

PCOS is a hormonal condition with three main criteria: excess androgens, infrequent or absent ovulation, and polycystic ovaries. Not everyone with PCOS experiences all three symptoms—to be diagnosed, you need to have two out of three.

If you have PCOS, you’ll often have much higher levels of anti-mullerian hormone (AMH). You’ll also have higher levels of androgens, a class of steroid hormones often thought of as "male" (including testosterone, androstenedione, and DHEAs), but are actually present in all healthy adult bodies. In women, they’re produced in the ovaries and adrenal glands.

Insulin, the hormone that allows your body to absorb blood sugar, is also part of the PCOS equation—if you have PCOS, your body may not be as responsive to insulin as it's supposed to be (this is known as "insulin resistance"), so your blood sugar doesn't get processed. This may result in chronically elevated blood sugar and insulin levels. If you have PCOS, you may also lack progesterone, which leads to irregular periods (a trademark PCOS symptom).

After talking to a healthcare provider about your symptoms, they may do an initial physical exam to check for signs of excess hair growth and acne (both caused by high androgen levels). You’ll also likely get a pelvic exam, blood tests to assess hormone levels, and an ultrasound to detect those follicles on your ovaries. You may also get evaluated for insulin resistance.

Unfortunately, because so many different tests are involved in arriving at a diagnosis, the road to getting answers and successful symptom management can be rocky and delayed.

"I just felt like something wasn’t right": Diagnosis and misdiagnosis

Because there's no single test to identify PCOS, diagnosis can be a long and confusing process. For many people, the first indications of PCOS are the visible symptoms, including:

  • acne
  • weight gain that stubbornly resists lifestyle changes
  • excess facial body hair
  • male-pattern hair loss

Researchers are exploring the connection between PCOS and anxiety and depression. Pain with menstruation is common, too, but because it is more variable and affects folks with and without PCOS, its diagnostic significance is sometimes overlooked.

RK, 36, was diagnosed with PCOS in her teens. After a couple of years with irregular periods, her mother brought her to an endocrinologist, who diagnosed her and started her on oral contraceptives, one of the most common, and most effective, ways to manage PCOS symptoms. (Note that birth control does not resolve PCOS—more on that later.)

Other paths to diagnosis are more confusing and time-consuming. Elana, 39, wasn’t diagnosed until her twenties.

"I was in graduate school, I had not gotten a period for at least 6 months, and when I reported this to the doctor at student health services as part of an unrelated visit, she referred me to a reproductive endocrinologist for further assessment," Elana recalls. "That doctor diagnosed me based on the absence of periods, growth of facial hair, and acne, as well as having a sister who also has PCOS diagnosis. I have what the doctor referred to as "thin PCOS"—I do not have weight challenges and am generally able to maintain a healthy weight."

"The process was not clear at all and at best my doctors seemed to be guessing. It wasn’t like they didn’t care, just that they didn’t know much about the condition."—Sara

Sara, 35, also had a complicated journey to her diagnosis.

"I was roughly 18 the first time a doctor told me I probably had PCOS," Sarah recounts. "But I didn’t get anything like a confirmation until my mid-twenties when it became apparent that I was infertile. The process was not clear at all and at best my doctors seemed to be guessing. It wasn’t like they didn’t care, just that they didn’t know much about the condition."

Fertility + PCOS = ?

PCOS can make conception and pregnancy difficult. 70-80% of women with PCOS deal with infertility, but once pregnant, the live birth rates are the same as those who don't have PCOS. 30-50% of women with PCOS experience first trimester miscarriages, as opposed to 10-20% of those without it.

If you have PCOS, you should know that it is possible to get pregnant without the help of assisted reproductive technologies like IVF. Your doctor may recommend lifestyle changes, such as weight loss, to promote ovulation. If lifestyle changes aren’t successful, and you're experiencing insulin resistance, you may be prescribed metformin.

If this doesn't work, the next step is clomiphene citrate or letrozole, medications that work by addressing the hormone imbalance caused by PCOS, thereby prompting ovulation.

Not everyone responds to clomiphene (15% of users don't), and when this happens, gonadotropins, or synthetic hormones, are given by injection. If you have a regularly occurring menstrual cycle, your pituitary gland is producing both follicle stimulating hormone (FSH) and luteinizing hormone (LH) to stimulate ovulation each month. In PCOS, the balance between FSH and LH is off, and so FSH is given as an injection, sometimes accompanied by LH. The injection works directly on the ovaries to trigger the release of mature eggs.

Laparoscopic ovarian surgery (also referred to as ovarian drilling) is another option, recommended for women who are clomid resistant. Ovarian drilling is aimed at breaking through the thick outer layer on the ovaries seen in women with PCOS. This layer causes the ovaries to make more testosterone, and that results in irregular and absent periods and hair growth. By penetrating that layer, testosterone levels can be lowered, and regular ovulation restored. Ovarian drilling is a one-time, minimally invasive surgery, and about 50% of women who undergo this surgery will get pregnant within a year.

If none of these treatments work, the next line of fertility treatment is assisted reproductive technologies, such as IVF. The difficult part of facing a PCOS diagnosis and a desire to be pregnant is that no one, not even a doctor, can accurately predict who will struggle to conceive or how long it will take.

Ruth worried about fertility after receiving her diagnosis, saying "PCOS certainly gave me some anxiety over how I might one day conceive and become pregnant." But as it turned out, she had a remarkably easy path to pregnancy. "I was quite fortunate in getting pregnant, it was the first try, so I was surprised."

Sara, however, had a harder time. "It took years of trying to conceive a baby before a doctor confirmed PCOS was a problem, and it was giving me fertility issues. I was on public health insurance that wouldn’t cover fertility treatments. I was prescribed metformin, the drug that controls blood sugar levels, and we crossed our fingers. It took four years but we were able to have one child. I haven’t been able to have another."

Living with PCOS

Depending on the particulars of your condition and experience, PCOS can be anything from a minor inconvenience to a life-altering condition.

MB, 36, relies on hormonal birth control to manage their symptoms, and has learned to coexist functionally with their PCOS. "[PCOS] makes me feel like I can’t trust my body to do, hormonally, what it needs to do. I need to add extra hormones into my mix to function, truly. Otherwise I would really be writhing on the floor in pain every time I ovulated. [It’s] one more aspect of my femaleness that makes me feel at odds with my body."

"[PCOS] makes me feel like I can’t trust my body to do, hormonally, what it needs to do.—MB

From this experience, though, MB has gleaned important lifestyle cues. "[I] learn[ed] to take care of myself—truly letting myself rest, truly letting myself eat what I need to eat, staying hydrated, moving my body."

While birth control helps many people with PCOS, Dr. Sharon Briggs, Head of Clinical Product Development at Modern Fertility, warns that it can also delay diagnosis. "There's not much talk about how women are often put on birth control when they are younger to address irregular periods," she says. "But those irregular periods can often be due to PCOS. The result? PCOS can be masked and go undiagnosed for a long time."

"I’m ok with my PCOS. It’s just a part of me. I suppose I just stopped mourning the life I could have had and started loving the one I have."—Sara

"On the one hand, PCOS has taken away so many opportunities," says Sara. "But on the other, I think I love the life I have more because of my struggle with this disorder. It has given me a different perspective on my life. Things other people may take for granted bring me great joy. I went back to college to get a better job so I could afford fertility treatments and found a career I love and a community who supported me. Their support gave me the tools to learn about my disorder and eventually accept myself just as I am, not as some fantasy perfect woman I was trying to be. I’m in my mid-thirties now and I am happy with who I am in a way I never have been before and I’m ok with my PCOS. It’s just a part of me. I suppose I just stopped mourning the life I could have had and started loving the one I have."

If you suspect you might have PCOS, the first thing to do is to see a doctor. Your OB-GYN may be able to diagnose you, or may refer you to a reproductive endocrinologist. And if you already know you are a "cyster" (say it out loud!), check out the PCOS Awareness Association and PCOS Challenge for resources and support.

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M. K. Steines

M.K. Steines is a writer based in Tucson, where she is an MFA candidate in nonfiction at the University of Arizona. Her work can be found around the web and in print. Instagram @redstateblues

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