My Life with PCOS

Twenty years ago I was diagnosed with Polycystic Ovary Syndrome (PCOS), an endocrine disorder that affects over 10% of women in the United States. This disorder is one that I've struggled with for over two decades.  Over the years I've learned a few tricks to help me battle my symptoms but not many people understand what PCOS is or how it affects me.

They symptoms of PCOS are many and not all women experience them all:

  • Hair loss from your scalp and/or hair growth (hirsutism) in unexpected places.
  • Oily skin and acne problems.
  • Infertility (ovulation problems) or repeat miscarriages.
  • Weight gain, especially around your waist.
  • Depression and/or mood swings.
  • Irregular menstrual periods (or lack thereof)
  • Excess androgen levels.
  • Sleep apnea.
  • High stress levels.
  • High blood pressure.
  • Skin tags.
  • Infertility.
  • Acne, oily skin, and dandruff.

I've experienced all of them at different times in my life.  I silently suffer and rarely talk about it because it's emotionally exhausting and often painful to explain that my body is not running as it should.

My battle started in 1998 when my period completely stopped for 19 months.  I went to my doctor at the time and his first solution was to test me for pregnancy, despite the fact that I hadn't had sex yet.  I was 19 and he couldn't seem to believe I was telling the truth.  When two pregnancy tests came back negative there was no apology from my doctor and I was relieved when he retired a few months later.

I began seeing a much younger physician who seemed to understand and recognize my symptoms.  When he gave me the PCOS diagnosis I initially thought it was some made up condition.  The internet was still a toddler in 1999 so there wasn't any information on PCOS online.  There were no books written on the subject for me to check out at the library.

My new doctor focused on getting my period to start again and two rounds of progesterone treatments were completed, followed by three months on the birth control pill.  The pill made me emotionally crazy.  I was happy one minute and angry the next.  I found myself getting frustrated with the weight gain I was experiencing.  Exercise didn't seem to help and at one point I began eating once a day to try and starve myself thin.  It didn't last long.  My weight still went up.

That's the biggest misconception about women with PCOS.  Just because we're heavy, doesn't mean we're not healthy.  People think we eat too much and do not exercise.  This is simply untrue.  We struggle with a metabolic issue called insulin resistance.  Insulin is a growth hormone that promotes fat storage in our bodies, thus we gain weight. I could eat a perfect and healthy diet, exercise every day and still gain weight.  This is something I've fought with for most of my life.  I can lose 50 pounds and then suddenly I'll gain ten back over the next week without changing my routine.

The other PCOS symptom that I stress about is hair loss and hirsutism.  In high school I had thick and beautiful hair.  Now at age 40 my hair is thin and brittle. I try not to brush or comb my hair often because I hate seeing what's fallen out.  Worrying about my hair thinning and possibly becoming bald is terrifying.  Hirsutism isn't any better.  Finding unwanted, male patter hair growth on my face and chin is emotionally damaging. I constantly look in the mirror looking for strays to pluck, and worry what other people see when they look at me.

PCOS causes terrible acne and I often feel like I am 14 again instead of age 40. I can't tell you how many times I've felt ugly, not beautiful, because PCOS has robbed me of my femininity.

Due to the insulin resistance associated with PCOS I constantly crave sweet things.  Insulin is like an appetite stimulant that causes cravings for carbohydrate rich foods.  Fighting cravings for chocolate, pasta, bread and potatoes is a battle I fight every day.  I have to spread out my carb consumption evenly throughout the day to avoid insulin fluctuations and to keep my blood sugar from spiking randomly.  These erratic fluctuations in my insulin levels can cause my blood sugar to plummet.  This can cause headaches, dizziness and irritability. Sometimes I even get angry, or "hangry" and I cannot control my reactions or emotions.

PCOS can bring on some wild and crazy mood swings.  One minute I can be happy and the next I'm anxious, depressed or irritable.  It's common for women with PCOS to experience higher rates of anxiety and depression.  I often feel like I cannot handle stress and have to remove myself from situations that cause it.  I'm a people person.  I work with customers in my job, I love to socialize with family and friends, but often I find myself emotionally drained or worried that people notice my PCOS symptoms.  I often feel a strong desire to "detox" from people and stress, but being alone can trigger some feelings of depression.  This is a never ending cycle for me and I do well at hiding it most of the time.

During my childbearing years, PCOS caused infertility for me.  I spent countless hours discussing options with my OB/GYN.  It took 3 years to conceive my first child and five years to have my second.  The second time around I had three rounds of Clomid.  My third child was an absolute miracle (and surprise) but I had been working out heavily for several months and had lost a significant amount of weight which triggered ovulation in my body.

Despite all these horrible symptoms, there is help for women who suffer PCOS.  The first step is talking to your doctor.  I've discovered that low carb (healthy carb) diets are beneficial as well as regular exercise.  I mix it up with cardio and weight training because muscle mass changes as we age and I want to stay strong.  Yoga is also helpful for meditation and reducing stress.  Some of the books I've read have given me great advice.  PCOS for Dummies and the PCOS Diet are two that I recommend.

If you have PCOS or think you do, please know you are not alone.  There are so many women who fight this battle every day.  Talk to your doctor, talk to your friends and family. Send me a message.  We can commiserate together.


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