Poly and Me: A Personal Account of PCOS
By Mariel Swiggard
Shall I start with a confession? Hidden in my dresser is a faceless “doll” named Poly C. Every so often, I take Poly C from the drawer and I beat her up. Seriously. I’ve thrown her out the window. I have encouraged my dog to play tug-of-war with her cloth body. I have ripped her limbs off and sewn them back on just so I can rip them off again.
Before you suggest a good therapist, you should know something about Poly C. She got her name from a medical condition, Polycystic Ovarian Syndrome—shorthand PCOS.
I was diagnosed with PCOS three years ago but have had it since I was a teenager. When I was diagnosed, I was relieved to finally put a name to the many things my body does regularly to betray me. Since then, I’ve learned that I need to vent my frustration with PCOS or I’ll explode. Poly C seemed the best route if I wanted to stay sane, married, and still have friends and neighbors who didn’t cross the street to avoid talking to me.
The Illness
Statistics suggest that between six and ten percent of women suffer from PCOS. If 500,000 average women read this, as many as 5,000 of them might be reading about a condition they have. Chances are good that most of these women don’t even know they have PCOS; according to a Woman’s Day article, PCOS ranks twelfth in the most missed and misdiagnosed illnesses. Make my readers a group of women trying to conceive, and the number of sufferers is likely to be much higher: PCOS is a leading cause of infertility.
PCOS is a confusing illness known by several names: polycystic ovaries, sclerocystic ovarian disease, polycystic ovarian disease (PCOD), Stein-Leventhal Syndrome, and polycystitus. PCOS is the condition’s most common moniker, but even it tells only part of the story. “Polycystic ovarian” refers to the numerous ovarian cysts some women with PCOS experience, but PCOS has many symptoms—some easily detected and some not—that manifest themselves differently in different women. While one woman may suffer overtly from most of the symptoms, another woman may suffer from only a few less obvious symptoms and never be properly diagnosed. Many women are diagnosed with PCOS only after seeking medical assistance to conceive.
Poly and Me: A Personal Account of PCOS
By Mariel Swiggard
Shall I start with a confession? Hidden in my dresser is a faceless “doll” named Poly C. Every so often, I take Poly C from the drawer and I beat her up. Seriously. I’ve thrown her out the window. I have encouraged my dog to play tug-of-war with her cloth body. I have ripped her limbs off and sewn them back on just so I can rip them off again.
Before you suggest a good therapist, you should know something about Poly C. She got her name from a medical condition, Polycystic Ovarian Syndrome—shorthand PCOS.
I was diagnosed with PCOS three years ago but have had it since I was a teenager. When I was diagnosed, I was relieved to finally put a name to the many things my body does regularly to betray me. Since then, I’ve learned that I need to vent my frustration with PCOS or I’ll explode. Poly C seemed the best route if I wanted to stay sane, married, and still have friends and neighbors who didn’t cross the street to avoid talking to me.
The Illness
Statistics suggest that between six and ten percent of women suffer from PCOS. If 500,000 average women read this, as many as 5,000 of them might be reading about a condition they have. Chances are good that most of these women don’t even know they have PCOS; according to a Woman’s Day article, PCOS ranks twelfth in the most missed and misdiagnosed illnesses. Make my readers a group of women trying to conceive, and the number of sufferers is likely to be much higher: PCOS is a leading cause of infertility.
PCOS is a confusing illness known by several names: polycystic ovaries, sclerocystic ovarian disease, polycystic ovarian disease (PCOD), Stein-Leventhal Syndrome, and polycystitus. PCOS is the condition’s most common moniker, but even it tells only part of the story. “Polycystic ovarian” refers to the numerous ovarian cysts some women with PCOS experience, but PCOS has many symptoms—some easily detected and some not—that manifest themselves differently in different women. While one woman may suffer overtly from most of the symptoms, another woman may suffer from only a few less obvious symptoms and never be properly diagnosed. Many women are diagnosed with PCOS only after seeking medical assistance to conceive.
Common PCOS Symptoms
Irregular periods
Heavy/prolonged periods
Absent periods
Ovarian cysts
Irregular or absent ovulation
Hirsutism (excess facial/body hair)
Alopecia (male-pattern hair loss)
Insulin resistance
Weight problems
Adult acne
Skin tags
Acanthosis nigricans (brown skin patches, often found on the nape of the neck)
High cholesterol levels
High blood pressure
Exhaustion and/or lack of mental alertness (especially at end of day)
Decreased sex drive
High levels of "male" hormones such as androgens, DHEAS, or testosterone
Infertility
Decreased breast size
Enlarged clitoris (considered rare)
Enlarged ovaries
Enlarged uterus
Migraines (less recognized, not well studied)
Depression (may be caused by hormonal imbalances or as a result of suffering symptoms which adversely affect self-esteem)
Diagnosis and Treatment
Twenty-five women suffering from PCOS may produce 25 different sets of symptoms with varying degrees of severity. No wonder it’s so confusing! One doctor told me she suspected that I might have PCOS, but she doubted it for a while because I did not have the excess facial hair and skin problems so many PCOS women she’d seen have (just call me, “Plucky” and handy with a make-up case) and in fact, my body type threw her off because she’d seen PCOS women who were overweight, but all of them had the smaller breasts. I was overweight, but my bra size is not small. What I’ve learned is that you can’t tell a PCOS sufferer by sight. Whether you're aware of the fact or not, you probably know a woman with PCOS.
Though PCOS was first documented 75 years ago, the underlying causes of the disorder are not clear. There is strong evidence for a genetic link. There is no cure for PCOS or pills to end the constant onslaught of symptoms. Certain symptoms of PCOS are treatable however, and current research has been offering hope to PCOS sufferers. Changing to a low carbohydrate diet works for many women. Taking Metformin, a drug used to treat diabetes, has also shown great promise, and many PCOS women are able to ovulate and conceive using a combination of Metformin and the fertility drug, Clomid. Because of the varying nature of the symptoms, a woman with PCOS may sometimes feel as though she needs a team of doctors: I envision a staff including my gynecologist, reproductive endocrinologist, a therapist, a nutritionist, a dermatologist, and a personal trainer.
Unfortunately, there is no one test used to diagnose PCOS, and numerous disorders and illnesses can cause variations of PCOS symptoms. My doctor solidified PCOS as the diagnosis only after running several tests and then discovering I was insulin resistant (IR)—frequently a precursor to diabetes. The IR also makes losing weight extremely difficult and leads to a feeling of lethargy after meals. PCOS women also have an increased risk for endometrial cancer, heart disease, and diabetes—another good reason to discuss PCOS with your doctor if you have any suspicions about your own health.
The Effects and My Story
While I worry about the possibilities of full-blown diabetes, in my day-to-day life my biggest heartache is unquestionably the infertility issue. My life plan has always included children, and it never occurred to me that I would have problems getting pregnant.
My story is not unusual for a PCOS woman. I saw doctors and discussed my frustration at being unable to conceive, yet instead of trying to diagnose the problem or sending me to a fertility expert, doctor after doctor told me that the core of my problem was my weight. I was on the low border of the technical definition of obesity. I had mild struggles with weight when I was younger, but those problems had ended midway through college and had only seemed to return about the time of my marriage. No one, including me, noticed that my weight problems ended when I went on birth control pills and began again when I stopped taking them. Hormone management had lessened the PCOS symptoms, but no one appreciated it at that time.
No matter how faithful I was to the many strict, low-fat diets I tried, I didn’t lose weight. Several of the diets even made me gain weight. I tried to exercise, but by the middle of the day I was too tired to move, and my commute to work meant that a morning workout would have been insanely early. Not that I had the energy to get up and do it then anyway. I was caught in a frustrating cycle: doctors told me I was tired because I wasn’t exercising, but I struggled with exercise because I was so tired from insulin overload. After all those wasted years, I learned that those low-fat diets were exactly wrong for me. Low fat foods often mean a high carbohydrate diet—a very bad choice for someone who’s insulin resistant.
After six years of no progress, I had finally given up hope. I was going to turn 30 in 1999 and was suffering from yet another missing period, somewhere in the 65-day late range. Two home pregnancy tests and a test from our new family doctor were all negative. My physician referred me to a gynecologist and so I found a new one, picked solely because she was near my office and had a lunch appointment available. She turned out to be the best I could have asked for. I went in, she listened to my story.
My new doctor said that she thought I was suffering from a hormone imbalance and she’d write me a prescription for Provera to induce a period. Of course she couldn’t give that to me until she had a negative pregnancy test result, so I peed in the cup, and they drew blood. As she went ahead with a routine exam, she said that she actually suspected she knew why I was having problems and would explain in detail after the exam. Moments later, a nurse came in, whispered to the doctor, and then smiled at me. It turned out that I was pregnant!
It also turns out that my doctor was not mistaken about her suspicion that I had PCOS. Because of the pregnancy, she assumed that was incorrect, and I was not formally diagnosed until my daughter was a year old.
My doctor and I had great hope that now that I was diagnosed, being treated, and had already proven that I could conceive and carry to term, getting pregnant a second time would be much easier. No such luck. I am on year three. I have responded to the Metformin in that I have more energy and have lost some weight. I did not respond to the Metformin/Clomid mix which helps so many PCOS women.
This current time of trying to conceive is, in some ways, more frustrating that the first. I chart my basal body temperatures and cervical mucus because I discovered that ovulation predictor kits often do not work for PCOS women because we have odd hormone surges that throw the predictors off. I know my body better now than I believed possible, and I guess that’s a good thing. I know that having a period does not necessarily mean I have ovulated, and that I never spontaneously ovulate on cycle day fourteen, which is considered the ideal. When I do ovulate, it’s usually later in my cycle. In the last year I suffered two early miscarriages. In this case, ignorance would have been bliss. When I discussed it with my reproductive endocrinologist, she affirmed my suspicions; I have probably had several miscarriages over the years. This is not uncommon for PCOS.
I spend lots of time online talking to other PCOS and trying-to-conceive (TTC) women. I don’t know what I would do without them, frankly. I have discovered another trait of PCOS: strength. The support groups I belong to are filled with extraordinary women facing extraordinary challenges. The best group for me has been a group of TTC women, all with PCOS. It’s not that we face worse challenges than any other group of long-term TTC women, but we face some very specific PCOS problems.
I am now in something that all TTC women can understand—the two week wait between ovulation and the expected arrival of my period. I hope for the best, but I try to be realistic. Even my reproductive endocrinologist isn’t too hopeful that I can conceive without more overt medical assistance, so we’re debating the next step.
I appreciate this chance for me to tell as many women as possible about this illness. There is an excellent quiz on the PCOSupport.net website
http://www.pcosupport.org/support/quiz.php, which might help tell you if you need to discuss the possibility of PCOS with your healthcare provider.
Today, Poly C. is resting quietly in my drawer. I’ve thought about just throwing her away. If only getting rid of the real thing were that easy!
http://www.babyzone.com/features/con...contentid=1275
Poly and Me: A Personal Account of PCOS 
