Living with PCOS (Polycystic ovary syndrome)
By Kara Storey. Original version published in Family Foundations.
When Jamie and Nicole tied the knot in 2013, they were excited, yet apprehensive, to start a family. Since her teens Nicole had experienced painful, irregular periods and had difficulty maintaining a healthy weight. In high school, a doctor took stock of her symptoms and diagnosed her with Polycystic Ovary Syndrome (PCOS), an imbalance of male and female hormones coupled with irregular periods. The doctor also informed Nicole that fertility treatments would be necessary for her to conceive one day. “I was like, ‘No! I really want to be a mom,’” recalled Nicole, 33, from Downers Grove, Ill. “It was scary.”
To reduce her symptoms, Nicole’s doctor put her on the most common treatment for PCOS, the birth control pill. Eager to find a treatment that would maximize her chances of getting pregnant some day, Nicole falsely believed the pill would teach her body how to have regular cycles. She thought that once she stopped taking birth control, her body would be healed. While her cycles did regulate, Nicole experienced mood swings and her weight actually increased. After a year, her doctor agreed to try something new and put her on Metformin, a drug that can help reduce insulin resistance in women with PCOS and encourage their bodies to ovulate. However, her cycles went right back to being irregular.
Nicole would take Metformin on and off over the next 12 years, as well as attempt various diets and exercise regimens. She was able to see the most positive results whenever her weight was healthiest. Still, Nicole’s fear of not being able to conceive clouded the early months of her marriage. While Jamie and Nicole’s NFP instructor could clearly see from their chart that they were trying to conceive, Nicole couldn’t admit it. “It is interesting, just where I was mentally; I did not want to say that we were trying to conceive,” said Nicole, who was also back on Metformin. “And I wouldn’t even say that to Jamie because I had the message in my head that ‘you have PCOS, this isn’t just going to happen.’”
Eight months into marriage and still no positive pregnancy test, the newlyweds, who were living in France, embarked on their delayed honeymoon — a Mediterranean cruise. A day before their ship departed Venice, they decided to make a daylong pilgrimage to nearby Padua to visit the Basilica of St. Anthony. As they entered the shrine they saw pictures upon pictures of babies lining the walls, signs of answered prayers from St Anthony, who they realized was a patron of infertility. Many people had come in prayer to find an answer to their struggle with infertility. The couple quickly knelt down and touched the saint’s tomb, praying for a baby of their own. A few months later, with lifestyle changes, medical advice and continued prayers, Jamie and Nicole found out they were expecting their firstborn.
Understanding PCOS
PCOS is one of the leading causes of infertility in women and the most common reason for irregular periods, said Lauren Rubal, M.D., 39, a reproductive endocrinologist and infertility specialist from Newport Beach, Calif. According to the National Polycystic Ovary Syndrome Association, one in ten women are affected by PCOS, with 50 percent of women going undiagnosed. Symptoms of PCOS include: irregular periods (cycles longer than 35 days), excess facial and body hair, acne, weight gain, insulin resistance, small cysts on the ovaries, anxiety and depression, fatigue, cycles with no mucus or mucus constantly present, breakthrough bleeding and male-pattern hair loss. PCOS also increases a woman’s risk for issues such as abnormal cholesterol, diabetes or prediabetes, metabolic syndrome, heart disease and fatty liver. There is an increased risk for cancerous cells in the uterus if a woman isn’t bleeding regularly enough, which can happen in women with PCOS, Dr. Rubal added. “PCOS is hard because there’s such a spectrum [of symptoms],” she said. “It’s very interesting how PCOS presents in different women.” This spectrum is in part due to the way a woman’s unique combination of hormones, or lack of hormones, interact. Hormones, which play a vital role in the menstrual cycle and overall well-being, depend on each other, Dr. Rubal said. Thus, when one hormone isn’t functioning correctly, it can throw the others out of order.
According to the PCOS Awareness Association, the main hormones at play in PCOS are androgens, insulin and progesterone. Women with PCOS have higher levels of androgens, or male hormones, which are responsible for acne, unwanted hair, thinning hair and irregular periods. Insulin helps the body absorb sugar into cells for energy. However, the body of a woman with PCOS doesn’t respond to insulin correctly, causing elevated blood glucose levels, which makes the body produce even more insulin. Too much insulin in the body can cause the body to produce more androgens. Progesterone helps prepare the body for conception and assists in regulating the menstrual cycle. In PCOS, low progesterone contributes to irregular periods.
Another hormone that can function improperly in PCOS is estrogen. In a normal cycle, estrogen rises in a woman’s body before ovulation, causing her cervical mucus to increase and become slippery, allowing sperm to reach the egg. Some women with PCOS experience a fairly constant dry pattern, meaning their bodies aren’t producing enough estrogen, Dr. Rubal said. In others, they can experience a baseline pattern of continual mucus because two-thirds of women with PCOS are overweight or obese, and estrogen is also produced in the body’s fat cells.
While there is no definitive cause of PCOS, it is believed to have both hereditary and environmental components, Dr. Rubal said. Not every woman has a clear reason for having PCOS, but the disorder has been linked to a family history of diabetes, having a mother with PCOS and being overweight. Women with PCOS often have a hard time pinpointing ovulation — if they ovulate at all — the doctor said, which makes practicing NFP often very frustrating, not only for couples trying to conceive, but also for those postponing pregnancy. “You’re taught in NFP courses that a healthy cycle has a very beautiful pattern among the biomarkers,” Dr. Rubal said. “For a woman with PCOS, that may not happen because so many of the biomarkers rely on the changing hormones that occur with ovulation and post-ovulation. I have some PCOS patients where it took six months before they could ovulate on their own. Can you imagine checking a urine strip every day for that time? It can be very wearying and hard.”
Women with PCOS also have higher amounts of luteinizing hormone (LH), the hormone that surges to signal the egg to release, present throughout their cycle. So if a woman is using a qualitative LH predictor kit to identify ovulation, she may end up with days and days of positives that have nothing to do with ovulation, but just represent her baseline LH level, she added.
From Infertility to Five Children
The same issues that kept the Jamie and Nicole from conceiving early in their marriage — irregular cycles with hard to track biomarkers — have now given the couple five children. Nicole’s quick return to fertility was also partly fueled by her inability to exclusively breastfeed her children. While not all mothers with PCOS have difficulty breastfeeding, according to the La Leche League, some do because of a greater chance of underdevelopment of glandular tissue and insufficient milk supply due to the various hormones at play. Nicole, who found success eating a low-glycemic, non-processed, low carbohydrate diet to maintain her weight and reduce her PCOS symptoms, said she’s finally gotten to a place of peace about her family. However, it’s been a frustrating road filled with times of extended abstinence and days of nervousness after intimacy. Not knowing if she’d ever be able to have biological kids, Nicole said she is filled with gratitude for her family. “It’s just so amazing that this is my life now,” she said. “The person I was five years ago is so much different than the person I am now. And I’m really thankful that this is how God decided to challenge me and help me grow closer to him. I had no idea that God could make something so beautiful out of this cross of PCOS that I have been carrying.”
For the second part of our series on PCOS, check back to the blog later this month.
Don’t Face PCOS Alone
The beauty of an NFP community is knowing nobody has to face PCOS alone. Fertility Science Institute offers Coaching for special situations, like PCOS, in both English and Spanish. Check out fertilityscienceinstitute.org/coaching for more details.