I just learned on Sally Cronin’s wonderful blog that this past week was Women’s Health Week. While my blog focuses mainly on family issues, what could be more important than the health of the people we love? Given the “Women” aspect of Women’s Health Week I’d like to share excerpts of something I wrote a few years back about a particularly stressful health issue affecting at least 10% of women, many of whom never know they have this condition. I hope this helps someone recognize a condition that may be plaguing someone they care about.
Here’s the story of a mother and daughter: (Spoiler alert, it’s me and my daughter)
Google may have saved my daughter’s life.
In the Joseph Heller novel, “Something Happened,” a chapter was titled, “My Daughter is Fat and Unhappy.” That described my daughter. She was fat, but she desperately didn’t want to be unhappy.When she was young, she was skinny and happy. She loved life, loved to laugh, and saw joy in every moment.
Time passed and tiny things about her body became noticeable. When she was 13, we bought a lovely dress for her Bat Mitzvah. She was giddy with excitement and couldn’t wait the two months to wear it. As I zipped her up on that day, though, I noticed the dress had become quite tight around her middle. Odd.
The next year, she went shopping with a friend and bought a dress for the eighth grade dance. She tried it on to show me. Right there in the middle of the dress was something I had never seen before– a little paunch. It wasn’t that I was horrified about her gaining a little weight; that paunch was just incongruous on her otherwise skinny body, so it raised a red flag in my motherly mind.
At her 16-year-old check-up, I asked the doctor if there was something wrong with her posture. I thought perhaps bad posture was causing her to stick out her stomach. The doctor assured me all was well. I also questioned why she had gained six pounds in two months. Again, the doctor said everything was fine. And, she made me feel just a bit like one of those mothers who cares way too much about her daughter’s weight.
That’s when I started to feel a combination of guilt and worry. Guilty because I worried that I had become one of those mothers who is so tied up with her daughter’s weight she loses sight of what really matters. I didn’t want to be a mom who makes her daughter feel fat just because she isn’t a size 0.
But, something didn’t feel right.
That summer, she was a junior counselor at an overnight camp. We didn’t see her for three weeks. When we did, it broke our hearts. She had gained so much weight and developed severe facial acne. She didn’t look like herself but she wasn’t unhappy and that mattered most to us. Still, unease crept into my heart.
That fall, she played field hockey and ran several miles each week. She ate healthfully and lost weight. But, the following summer at camp, the weight came back with a vengeance.She came home bigger than ever. I worried when she returned to school for her senior year, the kids weren’t going to be kind when greeting her new look. But, no one really said anything about it; they just pretty much ignored her.
She spent the summer before college working and living at home. She slimmed down from eating well and exercising. She went off to college in pretty good shape, with size 7 clothes.
About two months into that first semester, my baby called, hysterical.
“Mom! I can’t get dressed,” she sobbed. “I can’t get any of my pants on. I can’t leave my room.”
She explained that over time she noticed her pants getting tighter. She had already given up buttoning them and had been holding them closed with a safety pin. This day, though, the last pair she had been able to pin was no longer able to close.
“Hold on,” I said, “I’ll bring you some pants. I’ll be there in two hours.”
So, I bought four pairs of pants, size 11. I would have bought size 9, but I figured I’d err on the side of caution just in case she had gone up more than one size.
Two hours later I was knocking on her dorm door. A girl opened the door. I didn’t know who she was. Thank god I didn’t ask her where my daughter was because then it hit me — this girl was my child.
She looked like a sausage. Her clothes were tugging at the seams; her face was an acne-ridden, swollen, red balloon. She was crying. Her pants were pulled up, only a little past her hips and unzipped. She was the picture of abject misery. I didn’t feel much better.
And then it got worse.
The size 11 pants didn’t fit. We went to buy much bigger pants. I comforted her as best I could, assuring her weight gain at college is common and no big deal. I promised she would be okay.
For the next two years, her weight rode a roller coaster, down in the summer, back up in fall and winter. Her moods followed the same pattern of highs and lows. She struggled to meet boys but didn’t feel confident in her interior or exterior beauty. She had always been optimistic, but her life was getting her down.
Undaunted, she decided she had an eating disorder. She was always hungry and couldn’t stop eating. The drive to eat was stronger than her power to control herself. If she opened a bag of cookies, she’d eat the whole bag. She went to a therapist who prescribed an anti-depressant.
“You don’t understand,” she pleaded, “I’m not depressed, I just can’t stop eating. I’m really hungry.”
She went on Weight Watchers. On their “points” system, she’d run out of points before the day’s end. She was ravenous and tortured. But, she managed to lose about 15 pounds in the fall. By spring, those pounds returned and brought friends.
Just when she couldn’t feel worse about her appearance, something new burst onto the scene — facial hair.
Just before her 22nd birthday, I was thinking about everything she was going through. Weight gain, facial hair, acne, mood swings… they ran through my head like a mantra.
Weight gain, facial hair, acne, mood swings…
The words gathered into a Google search. I had no idea what I was looking for. Four seemingly unrelated issues ruining my baby’s life.
Weight gain, facial hair, acne, mood swings… hit ENTER. Google returned over 200,000 hits, referencing something I had never heard of — PCOS –Polycystic Ovarian Syndrome.
“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:
Weight gain and trouble losing weight
Extra hair on the face and body”
Following the description were stories from women who had PCOS, a complicated hormonal imbalance with a variety of consequences. Every poignant and compelling story told by young women detailed a similar struggle. 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. Most women who have it don’t know. As it’s the leading cause of infertility, many don’t find out they have it until they can’t get pregnant.
The national PCOS center was in Philadelphia, where we live. I called and spoke to Dr. Sharif. She asked a few pointed questions and said, “I believe your daughter does have PCOS. When can she come in?”
The doctor was totally booked on days we could get there so she offered to come in on a day off !
My daughter cried as she read about PCOS online. She said, “It’s like reading the story of my life.”
During the exam, Dr. Sharif showed us the markings of insulin resistance on my daughter’s body. She had darker brown areas across her knuckles, several raised skin tags and velvety brown spots. All of those indicate too much insulin pumping through the body.
Her apple-shaped body is another marker. The thinner arms and legs and a larger mid-section, are the PCOS profile. When she was 16 and I thought her posture was funky, it was that her midsection was out of proportion to the rest of her. That doctor blew off my concern but I knew. My motherly intuition told me something was amok. I should have fought harder to be heard.
As PCOS is 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 ties 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. The thing about PCOS is that women may or may not have every aspect of the syndrome. It takes a sharp physician to realize 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 after so many years of unanswered questions about what plagued my child, we burst into tears from sheer relief. We apologized but Dr. Sharif smiled, held our hands and said she totally understood.
PCOS can be treated but it is chronic and can’t be cured. Diet, exercise, and medication to treat the insulin resistance (the condition that leaves a woman hungry and susceptible to weight gain) are the keys to solving this problem. On a 10 scale of PCOS, my daughter is lucky; she’s about a 4. You know those women you see who are huge and have facial hair and bad skin? They may be 10 on that scale. Even with treatment, they might not be able to get down to a manageable size. Certainly if they’re not diagnosed they don’t have a chance.
Today my baby is healthy. The sensitivities borne out of years of suffering make her a compassionate first-grade teacher. She found her way back to being the person she was born to be. In some ways she was never really far away, just buried in a sea of too much weight and unanswered questions.
PCOS can lead to serious complications including diabetes, heart disease, and the inability to conceive. But knowledge is power.
My daughter would like to hand out business cards 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 give them to the women we see every day; those 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 happier and healthier lives.
There are many lessons in this story. As mothers, we must follow our gut instincts for our children, even when the world beats us back. As women, we must fight to make our voices heard. As patients, we must insist doctors hear and respect what we tell them. And we can never back down when our hearts and souls tell us we’re right.