Life with Polycystic Ovary Syndrome (PCOS)

By Kara Storey. Original version published in Family Foundations.

The first part of the article was posted on this blog post.

Jackie, 32, of New Jersey describes the emotional and spiritual toll of PCOS as a “roller coaster.” It took years for the high school teacher to be diagnosed with the PCOS disorder. Noticing she was having uncontrolled weight gain and irregular cycles in her early 20s, sometimes going six to eight months between periods, Jackie set out to find answers. She saw five doctors, many who wouldn’t run further tests, and all tried to prescribe her birth control. It wasn’t until she was working in college campus that she heard an NFP talk and realized NFP could help diagnose her condition. After an introductory course to NFP, Jackie reached out to an NFP-only doctor and was diagnosed with PCOS. After a few years of charting, Jackie realized she was completely anovulatory.

The journey and subsequent diagnosis brought out many emotions for her: fear of a diagnosis, joy at having answers, anger at people who didn’t take her seriously, and confusion about what it meant for her future, she said. Journaling and prayer has brought her the most peace in times of turmoil. “I’ve found comfort in actively acknowledging that there is more to my femininity than my messed-up body,” she said. “I am not broken just because I struggle with PCOS, and learning different examples of feminine strength in different situations has helped me understand that.”

One of the more overwhelming experiences for Jackie has been her attempt to maintain a healthy diet and lifestyle. She said she has tried “everything under the sun,” from low carb and low sugar diets, to a variety of supplements and numerous exercise programs. She’s found the diet and exercise programs especially difficult to maintain, she said. “It is harder than many people realize to diet and exercise with PCOS because your hormone levels play such a huge factor in many other parts of your body,” Jackie said. “Insulin resistance makes everything harder, and the hormones sometimes lead to mood swings that make it nearly impossible to not give into cravings. PCOS can also make you exhausted — so having the diligence to workout regularly is extra difficult because sometimes I’d barely make it through the regular work day. It’s kind of like going through everyday life with a backpack full of rocks — sometimes you can handle the extra burden, and sometimes it’s like you’ve just been told to climb Mt. Everest.”

She said she has seen improvement in her health through the use of bioidentical progesterone, the multivitamin Optivite and inositol, a supplement used to help insulin resistance. In 2016, Jackie married her husband, Ken. The couple tried to conceive for two years before seeking medical intervention. Last year Jackie underwent laparoscopic surgery that included an ovarian wedge resection, removal of endometriosis and the unblocking of her fallopian tubes. Chronic endometritis (persistent inflammation of the inner lining of the uterus) was also discovered, which Jackie treated with antibiotics. She said the surgery has made a big difference in her ability to lose weight and ovulate on her own. In fact, this past July, Ken and Jackie were overjoyed to discover she is pregnant for the first time.

Ken and Jackie advise other couples with a PCOS diagnosis to know their options aren’t limited to the pill or IVF. Finding a support system for your journey is important, Jackie said. “First, know that you are not alone, and that your self-worth comes not from your body, your fertility, or anything like that,” she said. “The suffering you experience with PCOS is not God punishing you in some way, and He is right by your side through it all. Second, learn about your body, your diagnosis, and learn to advocate for yourself. Lastly, know that a PCOS diagnosis is not the end of everything. There are multiple options for treatments, and ways to manage and chart your cycles that work well for PCOS.

Diagnosis and Treatment of PCOS

There are lots of different causes for irregular cycles besides Polycystic Ovary Syndrome (PCOS), said Dr. Lauren Rubal, 39, a reproductive endocrinologist and infertility specialist from Newport Beach. That is why PCOS is a diagnosis of exclusion, she said, and women should first rule out other causes of irregular cycles and other symptoms. For women wondering if they might have PCOS, Dr. Rubal suggests they ask themselves two questions: Am I having irregular cycles, lasting longer than 35 days? Do my symptoms bother me? If the answer is “yes” to both, then a woman should make an appointment with her physician to be evaluated. “Knowledge is power,” she said. “I always err on the side of going in and seeing someone and then having a plan instead of continuing to wonder about what’s going on.”

Besides looking for evidence of male/female hormone imbalance, such as bothersome acne and excess body hair, PCOS can also be diagnosed via a blood test to check for excess androgens and by ultrasound of the ovaries. Women with PCOS often have a “string of pearls” look to the follicles in their ovaries. Even with a PCOS diagnosis, women should not lose heart, Dr. Rubal said. “There are good studies supporting that in women with PCOS, even if they’re not ovulating regularly, if at all, once we get that woman to ovulate by a different means, her chance of pregnancy on a per cycle basis approaches that of a woman with no issues of infertility,” she said. “That is remarkable.”

The method by which most doctors treat PCOS is the birth control pill. Containing synthetic estrogen and synthetic progesterone, the pill releases these hormones in the body at the same time, all the time, which is not how they’re naturally produced in the body, Dr. Rubal said. It’s problematic, she added, because these hormones affect the brain, causing side effects such as mood issues, lack of libido and an increase in symptoms of depression and anxiety. The pill also increases a woman’s risk of blood clots and hormone-responsive cancers.

But besides the risks, the pill only suppresses the symptoms of PCOS, instead of trying to heal the root cause. “So when this woman is finally ready to have a family, she’s going to be at square one or even worse,” Dr. Rubal said. “This could mean an even harder time addressing it and curing it so that she can go and have a family like she wants.”

Addressing PCOS is something any woman can begin doing at home, she said, adding that diet is especially powerful. While all women should consult their own doctor for advice, Dr. Rubal recommends a low glycemic index diet, eating foods that aren’t going to cause spikes in sugar that will worsen the insulin, which contributes to the vicious cycle of hormone imbalance in PCOS.

Women should also avoid processed foods and sugars, focusing more on non-starchy vegetables. Fruits and whole grains (not refined carbohydrates) can be consumed in moderation. Eating organic foods to avoid pesticide exposure can also be helpful, she advised. Overall, focusing on a more plant-based diet and reducing consumption of endocrine-disrupting red meats — even if just changing one meal a week to vegetarian — can be helpful, she said. Exercise is also incredibly important for women with PCOS. “Exercise helps soak up that excess sugar and restore the insulin balance,” Dr. Rubal said. “It helps decrease stress and weight.”

Supplements can also play an important role. With her patients Dr. Rubal mainly uses inositol, which helps lower insulin and testosterone levels; N-acetyl cysteine, a powerful antioxidant that helps reduce insulin and testosterone levels; and methylfolate, which helps process hormones and improve mood. If diet and lifestyle changes are not enough, medicinal options to try to induce ovulation, such as letrozole, are also available, she said. Metformin, a diabetes medication that can help control insulin and blood glucose levels, can also help ovulation. Gonadotropin injections, laparoscopy and ovarian wedge resections are also ethical, though more invasive, options for treating PCOS. For couples struggling to track their fertility signs, Dr. Rubal is a believer in incorporating as many biomarkers as possible to get a clearer picture of what the woman’s body is doing.

Ultimately, Dr. Rubal said, women with PCOS should not give up, as it’s a condition that can be improved with many different techniques. “It’s something where I’ve absolutely seen so many women get pregnant, even without using medications to cause ovulation,” she said. “There’s a lot of different avenues by which to heal this and restore normal ovulatory cycles. So have hope!”

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.