When You’re Aware Something’s Not Right: PCOS Awareness Month

In high school, I once got a menstrual period so bad that I blacked out in class, got dragged to the nurse’s office by a classmate, and threw up in the principal’s private bathroom.  I never knew when my period could start, which meant I often bled through my pants in public with no warning.  I didn’t know that women actually got their periods on fairly regular schedules until my freshman year of college when my friends complained about being on the same cycle.  I could go months without menstruating.  And then, during my last month of my first year of college, I had several small periods in succession.  I mentioned this to my mom and she quickly took me to my first gynecological appointment. 

PCOS Awareness Month | Twin Cities Moms Blog

When you’re 19, the gyno feels horrifying.  Mine came with the extra bonus of blood work, a complete abdominal ultrasound (performed with a painfully full bladder), and several rigorous pelvic exams.  The final doctor stopped just short of the endometrial biopsy I had been ordered.  While a nurse stood next to me, patting my knee, the doctor pronounced that I had Polycystic Ovarian Syndrome (PCOS).  “You’ll probably have some trouble getting pregnant,” he groused, “But modern science will come a long way by the time you’re ready for that.”  He prescribed me birth control pills to regulate my menses and sent me on my way to my anxious mother in the waiting room.

Believe it or not, this awkward encounter makes me one of the lucky ones.  Not only did I learn why my body didn’t work properly, but a doctor actually took me seriously and did something about it.  Too many women suffering from PCOS don’t have the same opportunity.

I can’t tell you how many people have PCOS because it’s chronically misunderstood, under-reported, and undiagnosed.  Possibly as many as seven million women in the United States have it.  Many of them don’t realize it or don’t realize its impact because of its categorization as a syndrome.  We refer to PCOS as a syndrome because a set of symptoms tend to indicate PCOS, but it has no specific test and no known cause.  Many women don’t even realize they could have it until they try to get pregnant.

PCOS Awareness Month | Twin Cities Moms Blog

PCOS escapes detection because patients and doctors alike can confuse its symptoms for other ailments.  Ultimately, PCOS can be diagnosed when a woman experiences any two of the following three symptoms:

  • Irregular periods.  This typically sends people to the doctor in the first place.  While a woman’s menstrual cycle typically lasts around 28 days, a woman with PCOS might have well over 30-day cycles.  The periods may also be abnormally heavy due to the buildup of tissue.
  • Extra male hormones.  While a woman’s body always produces some male and female hormones, a woman with PCOS produces more androgens than usual.  This results in a variety of symptoms including acne, coarse body hair, thinning hair on the head, and excess body weight around the waistline.
  • Polycystic ovaries.  This used to be the hallmark symptom of the condition, hence its name.  However, doctors realize that this might not be observed in all women who nonetheless have the remaining symptoms of PCOS.  Having polycystic ovaries means that the ovaries can be seen via ultrasound as being enlarged with fluid-filled follicles.  While ovaries often have cysts, a women with PCOS has ovaries with numerous, large cysts.

These three primary symptoms interlock.  For instance, because the ovaries are enlarged and cyst-covered, they do not perform their hormonal functions properly, resulting in an imbalance of hormones.  However, that hormone imbalance also prevents healthy ovulation, resulting in ovaries that develop cysts.  Medical professionals cannot determine the precipitating cause of the syndrome.  All its symptoms seem to feed each other.

PCOS Awareness Month | Twin Cities Moms Blog

Worse yet, the symptoms strip a woman of the things she might consider most essentially female.  Because of increased androgens, a woman with PCOS may experience male pattern baldness, hairy knuckles, a round gut, and other physical characteristics that aren’t typically considered attractive for women.  PCOS causes some level of insulin resistance, making it even harder for a woman with PCOS to actually lose weight.  Ironically, keeping a healthy weight can help the symptoms of PCOS, so the thing you most need to do is the thing you have the most trouble doing.  Worst of all, because the ovaries do not function properly, pregnancy can be difficult or even impossible for a woman with PCOS.  One of the things a woman’s body was meant to do so easily and confidently becomes painful and frustrating.

Issues with weight, problem skin, excruciatingly painful periods, infertility.  Perhaps it comes as no surprise to hear that PCOS also carries an increased risk of depression.  Whether it’s the hormonal imbalance, the struggle of coping with life-altering symptoms, or some combination of the two, women living with PCOS often fight depression.  Not only do they deal with a quiet, misunderstood, difficult-to-diagnose physical condition, they also have to cope with the stigma and challenge of mental health management.

PCOS Awareness Month | Twin Cities Moms Blog

I didn’t know all this nearly two decades ago when that gruff gynecologist shrugged me the diagnosis.  I didn’t even know what PCOS was, much less what it meant for my continuing health.  I wish I’d known that my belly fat would never really go away.  Maybe I could have been a little more gentle with myself.  I wish I’d known that depression would chase me my whole life.  Maybe I could have been more proactive about treatment.  Worst of all, I wish I’d known just why and how conception would prove so difficult.  Maybe I could have had the endurance for the two years of infertility treatments that would prove unsuccessful.  Maybe I could also have had more hope for that surprising day when I found myself pregnant without any medical intervention whatsoever.

September is PCOS awareness month.  This month, we have the opportunity to discuss something often left unsaid.  Whether you are a woman who can’t understand why your body doesn’t seem to work as it should, a woman with PCOS who feels alone, or someone who struggles to discuss your loved one’s condition, you get a chance to practice this month.  We can learn more about the condition, find ways to cope with its effects, and speak more publicly about something that doesn’t often get airtime.  I hope that you can learn from me, from other women, and from numerous medical resources.  Together, we can make this one thing just a little bit easier.

Do you have a story to share about PCOS and how it affects your life?  I invite you to share it.  Let’s support each other and find hope in our strength.

6 Responses to When You’re Aware Something’s Not Right: PCOS Awareness Month

  1. Dannielle September 18, 2017 at 1:01 AM #

    I almost want to burst into tears reading this. Even though I had the symptoms for years it always got blown off as a thyroid issue(I had my thyroid gland removed at 22 from cancer) I was 32 when I finally got diagnosed and it changed my life. I still have difficulties but at least know what the problem is now.

    • Megan Torgerson September 19, 2017 at 2:14 PM #

      Dannielle, I hope you find peace and healing. Thyroid problems and PCOS are a difficult combination (solidarity!). There’s something to be said for just knowing what you’re actually dealing with. Here’s to better days!

  2. Ashley September 21, 2017 at 4:53 PM #

    I was diagnosed with PCOS after a super painful period at the age of 18. I didn’t even get my first period until 16. I was told I may struggle getting pregnant. Given pills and sent on my way. I am a lucky one. I had zero trouble getting pregnant and have 4 cute little ones! However, one thing that wasn’t mentioned was also the severe trouble of being able to breastfeed. I was told I wasn’t trying hard enough. I took every pill, drank every drink, ate the right things, and just want ever able to nurse to my babies satisfaction or pump more than an ounce… combined… after power pumping for an hour! The kicker was when I had to rush my 2nd child to the hospital after 48 hours when she went limp in my arms. She was so dehydrated that after 2 spinal taps they got nothing. I was strictly determined to nurse her with no formula supplements that I almost killed her. PCOS affected my ability to produce milk. I am able to give the colostrum but after 6 weeks only an ounce is the most I could ever pump and after nursing for an hour my littles always wanted more. Be aware that PCOS can affect your milk supply too!

    • Megan Torgerson October 6, 2017 at 2:37 PM #

      PCOS can really mess with anything hormonal. I struggled with nursing, too, and was glad to find the support I needed. I’m sorry to hear it was so painful for you and your kiddo.

  3. Tammy Gómez October 6, 2017 at 11:15 PM #

    I was diagnosed with pcos at the age of 22 I’m now 41 I have had my right Fallopian tube operated on had to take luperon shots for six months went Thru premenopausal at the age of 23 and got pregnant finally at the age 36 and miscarried and now I’m 41 and still nothing it’s was so painful thinking I was finally gonna be a mother everyone around me is pregnant o getting pregnant but me I really want to be a mother and there’s too many mothers throwing away their children when I can’t even produce one I have my faith in God that it will happen please pray I don’t care of my age I’m not giving up

    • Megan Torgerson October 7, 2017 at 3:27 PM #

      I know how painful infertility can be. I am so sorry for all your struggles. Have you heard of Resolve? Their support groups really helped me while I was trying to get pregnant. Regardless, I hope you find peace and joy.

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