Facial Hair, Weight Gain, Moodiness, Acne, Missed Periods: You May Have PCOS, Polycystic Ovarian Syndrome

Google may have saved my daughter’s life. And, if you’re a woman reading this, it might be able to do the same for you or someone you love.

Years ago I read a Joseph Heller novel called “Something Happened.” One chapter was titled, “My Daughter is Fat and Unhappy.” For a while, that daughter could have been mine. She was fat, but she desperately didn’t want to be unhappy.

When Alexis was a little girl, she was skinny and happy. In fact, during the nursery school carpool, one of the dads said that Alexis was by far the happiest child in the car every day.

Alexis loved life, loved to laugh, and saw the positive in every moment. She was a storybook little girl. She played with her sisters; she loved dressing up; she relished the world of make believe. She enjoyed food and was one of those lucky people who could seemingly eat forever and stay skinny. Her two sisters were just the same.

But, as time passed, tiny things about Alexis’ body became noticeable. When she was 13, we bought a dress for her to wear at her Bat Mitzvah, the coming-of-age ceremony for Jewish girls. The frilly white lace dress was the prettiest Alexis had ever worn. She was giddy with excitement and couldn’t wait the two months to wear it. When we bought the dress in February, it fit perfectly. When she got dressed on that April day, though, I noticed that when I zipped her up the dress was tight around her middle. She didn’t look any different, so I dismissed it as a fluke of some sort.

The next year, when she was in eighth grade, Lex went shopping with a friend and bought a dress for their eighth grade “formal” dance. Being not really so much an actual formal, the dress Alexis chose was a long, skinny, striped knit dress. She was excited because it was her first long dress. She tried it on to show me and I was taken aback because right there in the middle of the dress was something I had never seen before. Alexis had a little paunch, a tiny belly protruding out from the middle of her clingy knit dress.

While I was a bit surprised, I certainly wasn’t horrified. Alexis was still skinny and in very good physical shape. She played field hockey and lacrosse, swam, and got a lot of exercise. That paunch was just a bit incongruous so it raised an almost imperceptible red flag in my motherly mind.

By the time she was 16, her body had taken on an unusual shape. At her 16-year-old check up, I asked the doctor if Alexis had some kind of issue with her posture. I couldn’t put my finger on it, but she looked a bit off to me. Something about her midsection wasn’t normal. I thought that perhaps her posture was such that she was kind of sticking out her stomach somewhat unnaturally. The doctor assured me that all was well.

I also asked about the weight gain because Alexis had been there about two months earlier and had been weighed for a sports physical. Now, at this visit, she showed a six-pound weight gain. It seemed like a big number. Not alarming, necessarily, but still, I had to wonder why she was gaining so much weight in so little time. Again, the doctor assured me that all was well. And, she made me feel just a bit like one of “those” mothers who cares way too much about her daughter’s looks.

That’s the point where I started to feel an odd combination of guilty, unsettled, and worried. Guilty because I worried that I had become one of those mothers who is so tied up with her daughter’s weight that she loses sight of what really matters in raising a child.

I really didn’t want to be a mom who makes her daughter feel fat just because she isn’t a size 0. I couldn’t believe that Alexis’ weight had taken on so much “weight” with me. What had happened to my parenting goal of raising daughters who know that it’s what’s inside that matters? How had I suddenly morphed into that mom who we all know is a bitch and whose daughter will definitely end up in therapy, understandably complaining about how her mom made her feel like crap?

On the other hand, something didn’t feel right. I was unable to be articulate on the subject, but I felt that I was silently screaming into oblivion, “I’m not crazy. I’m not just a bitchy, weight-obsessed mom. Something is wrong with my daughter. Can’t anyone see that?”

That summer, Alexis went off to be a junior counselor at an overnight camp. We didn’t see her for about three weeks. When we did, it nearly broke our hearts. She had gained so much weight, her face had developed pretty severe acne, and she just didn’t look like herself.

But, she didn’t seem at all unhappy. She was having a great time at camp and had no complaints. So, her father and I just figured that she was what she was, she seemed healthy, and there was nothing we could do about it, so we moved on.

When Alexis came home in the fall, she played field hockey and ran several miles each week. She ate healthfully and she lost a bit of weight. But, the following summer back at camp, the weight came back with a vengeance. Alexis’s schedule at camp definitely did not promote healthy living. It wasn’t a particular athletic program, so she wasn’t as active as she was during the school year. And, on top of that, the counselors often ate pizza late at night. Plus, the camp food was pretty bad so they basically lived on white bread, fried things, and pasta.

My heart broke for her that summer because she came home bigger than ever. I worried that when Alexis returned to school for her senior year, the kids weren’t going to be so loving and careful when it came to greeting her new look.

After graduating from high school, Alexis spent her summer before college working and living at home. She slimmed down a bit from eating well and exercising regularly. She really worked hard at it and had some success. She went off to college in pretty good shape. The clothes she bought for school were, for the most part, junior size 7. She wasn’t skinny, but she looked pretty good and felt pretty good about herself.

About two months into that first semester, Alexis called and was hysterical.

“Mom! I can’t get dressed,” she sobbed. “None of my pants fit. I can’t get any of them on.”

She went on to explain that over time she had noticed her pants were getting tighter each time she put on a pair. She had already given up buttoning them and was holding them together at the top with a safety pin. This day, though, the last pair she had been able to wear was no longer able to close at all.

We only live an hour away from the college. “Hold on,” I said, “I’ll bring you some pants. I’ll be there in two hours.”

So, I set off for the nearest TJ Maxx and bought Alexis four pairs of pants, junior size 11. I would have bought size 9 but I figured that I’d err on the side of caution just in case she had gone up more than one size. It had only been two months but I decided to be better safe than sorry. And, I reasoned that if I bought her pants that were two sizes bigger, she’d have a little room for comfort.

I don’t think I’ve ever had a sadder shopping experience. I chose the pants quickly but the whole time I kept hearing the pain and desperation in her voice. “Mom, I can’t get dressed. None of my pants fit.”

Two hours later I was at her dorm door. A girl opened the door and for a few long seconds, I didn’t know who she was. Thank god I didn’t ask her where Alexis was because then it hit me – this girl was Alexis. “Oh, my god,” I screamed inside my head, “what the hell happened to my baby?”

She looked like a sausage. Her clothes were tugging at all of the seams; her face was a swollen, red balloon. She appeared to have been crying for years. Her pants were pulled up, only a little past her hips. She was the picture of abject misery. I didn’t feel much better.

And then it got just a little worse.

She put on the first pair of size 11 pants. They didn’t fit, and couldn’t be zipped. Ditto pair number two, number three, and yes, also number four.

We did what the tough do when the going gets tough. We went shopping. Bought much bigger pants. It was the second saddest shopping experience ever.

For the next two years, Alexis’ weight rode a roller coaster. It swept down in the summer amidst months of eating healthy, running, and a more active, outdoor lifestyle. Fall and winter it crept back up, not really slowly but definitely steadily.

Her moods followed the same pattern of highs and lows. The highs were joyful; the lows were desperate. She struggled to meet boys but didn’t feel confident in her interior or exterior beauty. She didn’t get accepted into the “cool” sorority she aimed for, but her friends did. She thought it might have been that they didn’t think the “fat” girl was cool. Who knows?

She tried so hard to be happy. Alexis had always had the most optimistic and positive attitude of anyone we knew. But, her life was getting her down, and her seemingly boundless joy of living was tripping over its limits.

Undaunted, she was driven to fix whatever was wrong. She decided that she had an eating disorder, because she was always hungry and could not stop eating. She exposed some painful honest admissions. She’d been holding these truths inside of her for years. But she couldn’t hide anymore and told us some of what she was going through. She was a sneak eater. She couldn’t help it. It was as if the drive inside of her was stronger than her power to control herself. If she opened a bag of cookies, she told us, she’d eat the whole bag. She’d buy cake icing and eat the container and then hide the evidence in her room.

Alexis believed the problem was no longer physical so much as mental. She made an appointment to see a therapist. The therapist thought Alexis was depressed. She prescribed an anti-depressant. “You don’t understand,” Alexis pleaded, “I’m not depressed. Really, I’m a happy person. I know I’m crying here, but really, I’m not depressed. I just can’t stop eating. I’m not depressed, I’m really hungry.”

Sure, she could have taken the anti-depressant. Many of her friends had already gone that route. What’s one more young woman involved with pharmaceuticals? She just didn’t feel that “depressed” was the correct diagnosis. And, if it wasn’t, then a drug aimed at treating depression wasn’t going to help.

Instead, she went on Weight Watchers. Think that’s easy when you live in a dorm situation? But, she made it work and lost weight again, only to see it return. And, she was hungry all of the time. On the WW points system, she’d run out of points long before the day’s end. But, Alexis is a determined person and somehow managed to lose about 15 pounds in the fall of her junior year.

By spring, those pounds returned, and brought a few friends.

And, just when Alexis couldn’t feel worse about her appearance, something new burst onto the scene – facial hair.

Being the mom who always wants to fix whatever ails my daughters, I made light of the hairs – literally – I bought her crème bleach to use, figuring that if the hairs were at least blond instead of black, no one would notice.

The bleach burned the skin on her face. That was way more noticeable than the hairs themselves. Plus, what do you say when people ask you what happened to your face, “I was trying to bleach my mustache”? She was comfortable telling people she had fallen and landed on her chin, but I winced just looking at her.

Just before her 22^nd birthday, I was sitting in my office thinking about all that Alexis was going through. Weight gain, facial hair, acne, mood swings…. they ran through my head like a mantra.

Weight gain, facial hair, acne…..

Weight gain, facial hair, acne….

The words flowed from my brain into my fingertips. They gathered together into a Google search. I had no idea what I was looking for. Three seemingly unrelated issues ruining a young girl’s life. Ruining my baby’s life. There had to be someone, something, out there that could figure out the connection and help her.

Weight gain, facial hair, acne…. hit ENTER… Google returned something like 200,000 hits. The majority of them referenced something I had never heard of – PCOS --Polycystic Ovarian Syndrome.

Here’s what I saw…

PCOS symptoms tend to be mild at first. You may have only a few symptoms or a lot of them. The most common symptoms are:

• Acne.
• Weight gain and trouble losing weight.
• Extra hair on the face and body. Often women get thicker and darker facial hair and more hair on the chest, belly, and back.

Following the description were tons of sites with stories from women who had PCOS, a complicated hormonal imbalance with a variety of consequences. Over and over, every story, every poignant and compelling story told by young woman after young woman detailing a struggle much like Alexis’s.

On one site, there was a listing of doctors who understand this syndrome. Most do not and that results in diagnoses not coming easily. That’s pretty astounding because PCOS affects at least 10% of women (some estimates say 15%) -- the same number affected by breast cancer, in fact. Most women who have it don’t even know. As it’s the leading cause of infertility, many don’t find out they have it until they can’t get pregnant.

Miraculously, there was a national PCOS center in Philadelphia, where we live. I phoned the number and left a message with a very sympathetic receptionist. I explained that I was seeking information for my daughter. She said the doctor would return the call. I doubted that would happen, but later that same day, Dr. Katherine Sharif called.

We spoke for a half hour. (Seriously, when was the last time a physician spent thirty minutes on the phone with you?) Dr. Sharif listened quietly while I vented all of my years of frustration, worries, and fears. She asked a few pointed questions. Then she said, “Yes, I believe your daughter does have PCOS. Of course, I’d have to see her to be sure, but I suspect this is her issue. When can she come in?”

This was in April. Alexis was not due to come home from school again until late May and she would only be home for a week before we all moved to work in North Carolina for the summer. Dr. Sharif was booked through the end of July. When I told her our schedule, she offered to come in on a day off (!) to see Alexis.

I called Alexis, told her to go online and read about PCOS. She said, “It’s like reading the story of my life in someone else’s words.” We were hopeful and couldn’t wait until the appointment day arrived. In the meantime, we both read online about the syndrome and learned all we could to try and understand.

The day finally came. During the exam, Dr. Sharif showed us where Alexis had the markings of insulin resistance. She had darker brown areas across her knuckles. She had several raised skin tags and velvety brown spots. All of those indicate too much insulin pumping through the body.

Alexis’ apple-shaped body is another marker. With thinner arms and legs, and a larger mid-section, Alexis fits the PCOS profile. When she was 16 and I thought her posture was funky, I was wrong. It was that her midsection was out of proportion to the rest of her.

Of course, Dr. Sharif took blood tests, too, but assured us that Alexis had PCOS. As it’s a syndrome and not a disease, it’s a grouping of seemingly unconnected symptoms (i.e. the weight gain, the facial hair, the acne, etc.). But, an astute physician can see the grouping as indicative of an underlying cause that does tie them all together, in this case, PCOS.

Had the doctor at the 16-year-old check up been more knowledgeable about this disorder, she would have been able to connect the dots. A girl whose body suddenly follows this pattern just after puberty -– rapid weight gain, especially in the stomach, severe acne, facial hair, and missed or especially painful periods. – likely has PCOS. Alexis did not have irregular periods, but the thing about PCOS is that you may or may not have every aspect of the syndrome. It takes a sharp physician to realize that having just three of the five major symptoms means you may have PCOS. If doctors were able to screen young girls for PCOS by age 16, many could avoid years of torment.

Once Dr. Sharif gave us the definitive diagnosis, Alexis and I started bawling like babies. We tried to explain that we weren’t crying from sadness, but just the opposite. After so many years of unanswered questions about what plagued Alexis, we cried from sheer relief. There was an answer, after all. The doctor said that she totally understood our tears, and we could tell she meant it.

Although it is chronic and there is no cure, PCOS can be treated. Diet, exercise and a medication to treat the insulin resistance (the condition that leaves Alexis hungry and so susceptible to weight gain) are the keys to solving this problem.

Alexis is lucky. Dr. Sharif said that on a ten scale of PCOS, Alexis is about a 4. You know those women you see who are huge and have facial hair and bad skin? The likelihood is that they have PCOS and may be 10 on that scale. Even with treatment, they might not be able to get down to a manageable, livable size. But, certainly if they’re not diagnosed, they don’t even have a chance. Alexis, being just a 4 on that 10 scale, can get better, and she has.

She’s 29 now, gorgeous, size 6, healthy, vibrant, and, yes, she’s happy. She’s found her way back to being the positive, optimistic person she was born to be. In some ways she was never really far away, just kind of buried in a sea of too much weight. She’s not sure what the future holds -- PCOS can lead to serious complications including diabetes, heart disease, and, yes, the inability to get pregnant. But, she has knowledge now and knowledge is power. Alexis is likely to live a very healthy and happy life. She is diligent about her health, her eating habits, her drinking habits, and her exercise. It’s not always easy. In fact, I guess it never is. But it’s worth it to be free of those years of torment.

Alexis would like to have business cards made up that say, “Please go online and look up PCOS. I have it, and think you might, too. Finding out could save your life.” She’d like to hand them to the women we all see every day; the women who are big in the middle, have mustaches or chin hair, and bad skin. They are her “cysters” and just as she’d do for her own sisters, she’d like to help them live better, happier, easier, and healthier lives.

There are many lessons in this story. As mothers, we must be guided by our gut instincts and always be our child’s advocate, even when the world beats us back. As women, we have to fight to make our voices heard, and when they’re not heard, we must make more noise. As patients, we must insist that doctors look beyond the surface and respect what we tell them. And we can never back down when our hearts and souls tell us we’re right. We can never stop listening to the voice inside that propels us forward.

If you see yourself in this essay or if you see someone you love, go online. Knowledge is Power.

If you'd like to read more of my strategies for taking great care of the fitness needs of you and your family, please visit my blog at The Joy of Fitness.