My name is Michelle and I have polycystic ovarian syndrome (commonly referred to as "PCOS"). My husband, Matthew, and I have been married since 2006 and have been trying to conceive ("ttc") since December 2007. Sadly, there are thousands of other couples facing the same challenges. Some studies show that 1 in 10 women suffer from some degree of PCOS. My purpose in writing is threefold. Journaling has always been a powerful therapeutic tool in my life. It allows me to put words with emotion and find oft hidden insights during times of struggle. I also hope and pray that our written journey brings awareness to the forefront. Many teenage girls and adult women are misdiagnosed each year, even with the assistance of modern technology. Women need to know the symptoms of PCOS and know what questions to ask their physicians. My biggest hope, however, is that other couples facing fertility issues as a result of PCOS will find encouragement, strength and a sense of belonging. You aren't alone in your journey. Other couples have been where you are and understand your hurt and fears.
The Beginning
My periods have always been irregular. As a teenager, the doctors said that I would eventually grow into a regular cycle. I married my high school sweetheart at the ripe old age of 19 and we began trying to conceive the next year. After only two months, I became frustrated and purchased a fertility monitor. I followed the instructions perfectly but never saw a "high" on the monitor. At that point, I began researching what could be causing my annovulatory cycles and self-diagnosed PCOS with the help of WebMD. Around that same time, I realized that my marriage was a sham. My husband was having multiple affairs and we divorced. Since conceiving was out of the picture at the time, I put PCOS on the back burner. I understood that PCOS was connected to infertility, but I didn't understand which internal systems were affected by the condition or the list of other possible symptoms.
At 23, I looked in the mirror and noticed that my body had changed. My once thick hair had begun to thin slightly around my hairline. If I wore certain clothes, I looked pregnant. Not even rounds of crunches made that go away. My symptoms were becoming more prominent. Matthew and I had been dating for only a few months at the time, but he pushed me to make a doctor's appointment just to make sure that I was okay. Sure enough, she diagnosed me with PCOS. The doctor prescribed birth control pills ("BCPS") and spironolactone, but also ordered lab work to ensure that I was a candidate for oral contraceptives (my family has a history of stroke and heart disease). The labs came back abnormal so I was forced to stop taking the meds and was referred to a hematologist to review and repeat the lab work. The ob/gyn wasn't able to explain anything about the labs--just that they weren't normal. The only hematologists in our area specialized in oncology so I was terrified when I when in for a consultation--patients were doing chemo in the next room. I didn't understand what was going on. The doctor didn't know anything at all about PCOS (he specialized in CANCER treatments, for pete's sake!!!). I was strung along repeating the same lab work for over a year, unable to take any PCOS meds because the ob/gyn refused to prescribe them until the hematologist cleared me for the BCPS (the ob/gyn did not prescribe spironalactone without BCPS due to the risks of birth defects). Finally, the hematologist confirmed that the "abnormal" clotting factor was just the result of my family history and nothing major to be concerned about at that time. Anyone with half a brain could deduct that someone with a family history of stroke probably has a genetic predisposition to clotting. It's not rocket science!!!
During this time, Matthew and I were married. We knew that we wanted children someday, so I began researching PCOS. I spent hours online, desperate to understand the medical condition that had changed my life. I was determined to be a knowledgeable patient and to avoid repeating the experiences with the ob/gyn and hematologist.
After I was finally cleared, I began searching for a doctor who specialized in PCOS and found an Reproductive Endocrinologist ("RE") at the local university. My health insurance does not cover any infertility related expenses, so RE's are normally excluded from coverage; however, because the treatment was for PCOS and not conception, the insurance company paid without question. Again, I was a pin cushion for about 6 months. But at least the tests were related to PCOS. Labs confirmed that my testosterone was about twice the normal range for women. The RE prescribed spironalactone without BCPS, but I suffered a severe allergic reaction to the meds.
When I went back to the office, Matthew and I had decided that we were ready to begin trying to conceive and I asked the RE for metformin (brand name "Glucophage"), a diabetic drug that works with the endocrine system and has become popular treatment for PCOS in recent years. Studies show that the medication regulates cycles in many PCOS patients after about six months of treatment (sometimes restoring ovulation). The RE laughed and said that their office only prescribed metformin with clomid. I expressed concern because Matthew and I weren't ready to go from not trying to conceive to fertility drugs immediately. I had brought several articles about metformin with me, but the RE and his assistant refused to listen. After arguing with the doctor for nearly a half hour, he finally wrote me a one month's script just for the metformin and made snide remarks about it as I left. Before I left the parking lot, I had already found a new ob/gyn, scheduled an appointment before the script was up and had requested that my medical records be forwarded to the new doctor. No, I did not attend medical school. No, I am not a physician. But I am a patient who has educated herself and is aware of her body. I have the right to ask questions, be treated with respect and seek a second opinion.
The transition to the new doctor went smoothly. She sat with me for over 45 minutes reviewing my charts, asking questions and answering mine. Then, she wrote a script for a year's supply of metformin, suggested that I take prenatal vitamins and encouraged me to chart my basal body temperature. That was in January 2008.
The first few months of trying to conceive were fun. Matthew and I "were making a baby" and sex was still fun. By the fifth month, I realized that I had not ovulated on the metformin.
Through research, I discovered that many women take soy isoflavones for five days at the beginning of their cycles to improve their chances of ovulating (soy isoflavones work in a manner similar to Clomid--I'll post a link to one of the articles later). Several women on multiple message boards actually conceived using soy so I gave it a shot. Sure enough, I ovulated, but no pregnancy. Then, I read that some women use Instead Soft Cups after intercourse to keep sperm near the cervix. I tried that too. No pregnancy. I also tried using ovulation predictor sticks, but they were very difficult to interpret (the test line must be "as dark as or darker than" the control line in order for the test to be positive).
Matthew and I have now been trying to conceive for over a year. Technically, we should have sought medical assistance six months ago (the recommended time frame for couples who have a preexisting condition that could cause infertility), but our health insurance doesn't cover fertility treatments or office visits directly related to infertility. We are financially secure and could afford the expenses of a child, but we aren't ready to spend thousands of dollars on medical expenses that won't guarantee a baby (without insurance, office visits are $350 each, plus lab work, medications, etc.). I'm due for my annual exam January 15th and the doctor said that she will prescribe up to six cycles of unmonitored Clomid at that time (given that the annual comes back clear). So here I am...hoping, praying and waiting to wait.
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