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PCOS: The Mental, Emotional, and Physical

What it’s like to have this hormonal disorder and how it impacts daily life.

Meet Julie. She is 27 years old, tall and slim with a clear complexion, works in sales and business development, has an awesome boyfriend, and just found out that she has Polycystic Ovary Syndrome (PCOS). The diagnosis was a shock because she has none of the external signs of PCOS that usually tip off physicians:

  • Weight gain.
  • Lack of energy.
  • Hair growth (hirsutism) on the face, arms, back, chest, thumbs, toes, and abdomen.
  • Hair loss on the head.
  • Acne, skin tags and darkened patches of skin.

Julie’s symptoms were all internal. By the time she was in puberty, she had headaches and migraines. She was diagnosed with anxiety and depression. She had sleep problems and was on birth control pill to control painful pelvic cramping and to regulate her periods. But since she did not have any of the most common symptoms, no one looked for PCOS.

When Julie was in college, she noticed breakthrough bleeding, even though she was still taking the same birth control pill for the last two to three years. So, her doctor switched her to a new pill and wrote off her anxiety, depression, and migraines as dating and school stress. Still, no one connected her problems to PCOS.

Several years later, Julie had breakthrough bleeding again on the new pill, and knew something had to be wrong. She knew changing her birth control pill wouldn’t solve her problem and could even make her depression and anxiety worse. She confided in a colleague, who ended up being the advocate she needed. On Julie’s next doctor’s appointment, she asked for a full workup to find out what was going on.

Her physician checked her ovarian reserve and did a transvaginal ultrasound. He found 15 egg follicles when he examined her right ovary and 15 more when he examined her left ovary. “Wow. You definitely have PCOS,” he said. While the both of them were shocked, Julie was also relieved to finally have a diagnosis that explained her headaches, mood swings, breakthrough bleeding and newly elevated blood pressure.

Julie wants to share her story because it’s not that unusual. Many of the symptoms of PCOS can be misdiagnosed or overlooked as the result of stress or menstrual cycle hormonal changes. They can also begin as early as puberty or as late as early adulthood. And even PCOS symptoms like irregular or missed periods can be misdiagnosed as the result of certain medications, too much exercise, a thyroid dysfunction, a thickening of the uterine lining, polyps or fibroids.

Source: NattakornManeerat/istock
Source: NattakornManeerat/istock

Diagnosing PCOS is important because it is a leading cause of female infertility and women with PCOS may need fertility treatments to help them conceive. If any part of Julie’s story sounds familiar, become your own health advocate and see a fertility specialist for a workup.

If you have already seen a specialist and have been diagnosed with PCOS, your feelings may be similar to Julie's feelings–that is, you may be shocked to find out that you have a chronic illness but relieved to finally understand your symptoms.

Anger is a common reaction, too, of course, because you will be forced to deal with this condition all your life. But many women are angry for a different reason. They are angry that their PCOS was not diagnosed and treated earlier, angry because they were labeled neurotic before their diagnosis, and angry their self-image was affected for years. Whether your reaction is shocked, relief, anger, or any combination of those emotions, accept your feelings. A PCOS diagnosis is enough to deal with without also worrying your reactions are a problem, too. They each serve a purpose. Shock is probably protecting you from thoughts and feelings about your diagnosis that you are not ready to absorb yet. Relief may be helping you to focus on the positive aspect of a life-changing diagnosis. Even anger serves a purpose because it energizes us. Anger is often protecting us from feeling helpless or depressed. So, whatever your first reaction to your PCOS diagnosis, observe it with interest and try to figure out its function.

What surprises many PCOS patients is how long it may take them to absorb the news. It takes time because the brain has to integrate the new information into almost every aspect of your life, particularly family planning for the future. This process can take up to two years, so when you wake up in the morning, the diagnosis may feel new again and hit you like it did the very first time. You are not in denial, you are in transition and everyone works through unexpected change at their own pace.

To help yourself work through the transition, increase your sense of control by gathering information about PCOS from reliable medical sources and become an expert on self-management. Knowledge is power and since we are built for daily life, don't withdraw. Push yourself to stay involved with your friends, family, and social activities while you are digesting the diagnosis or dealing with the symptoms. Researchers also recommend that patients with any chronic disease, like PCOS, should exercise regularly to support your physical health and your mood. And patients themselves tell me that talking to others who have PCOS helped them deal with the fertility complications and to move forward. Any support group would be sympathetic, they say, but only a group with a similar diagnosis can really mean it when they say, "I know how you feel."

And how is Julie handling her PCOS? She is using meditation to control her headaches and anxiety caused by her fluctuating hormones, using yoga to turn down her irritability, watching her diet and taking herbal supplements for her high blood pressure and feels more in tune with her body for the first time in years. Though she is still disappointed that no doctor made the connection between her symptoms and PCOS before, she is happy to know now. Knowing about PCOS increases her ability to predict what’s coming next and decreases her stress. Her focus is on management and monitoring, but she still describes herself as “a work in progress." Aren’t we all!