The summer before 7th grade, I was spending the day at soccer camp, when the blue sky quickly filled with dark storm clouds that began dumping rain on us and threatening us with bright flashes of lightning. The camp counselors quickly moved us into the field house and called our parents to pick us up. Upon returning home, I began peeling off my soaking wet clothes. As I did, I realized my underwear was not just soaked from the rain.
My first period had arrived. I spent the next 7 days wondering on how earth I would survive having periods once a month for the rest of my reproductive life when they seemed to require changing my pad once every hour or two. The heaviness was just chalked up to my pubescent hormones and shrugged off by my mom.
To my pleasant surprise, I did not have another period for another 6 months. During those 6 months, this seemed like the best thing ever. However, I paid dearly when it finally did arrive. This time, it lasted for 14 days, with the same life-disrupting flow of the first period.
My first soccer team, many years before I had to worry about my dysfunctional ovaries. I am the pipsqueak on the far left of the front row.
Concerned, my mother took me for my first visit with a gynecologist. After the briefest examination, she said, “You have hair on your upper lip and irregular periods. You have polycystic ovarian syndrome. We’ll put you on five days of progestin-only pills every other month to flush you out so that you don’t have such long and heavy periods.” It should be noted that my mother (as well as countless other women) also has hair on her upper lip and does not have polycystic ovary syndrome (PCOS), and this method of diagnosis is very much not how PCOS is diagnosed, but alas, she would turn out to be correct.
There was no mention of possible ramifications of PCOS on my long-term health, of which, there are many. There was no mention of holistic methods to manage my PCOS or my symptoms, including that hair on my upper lip.
Diagnosis of polycystic ovary syndrome includes meeting two of three criteria: 1) having elevated levels of androgens, 2) having irregular or absent periods, and 3) having polycystic ovaries, as observed by ultrasound. This image shows a characteristic ovary for someone with PCOS. The ovary contains multiple enlarged follicles. Source: https://clinicalgate.com/polycystic-ovary-syndrome-4/
For several years, I followed that doctor’s protocol. And then in my senior year of college, I went to the student health center to renew my progestin prescription. The doctor there was appalled that my previous doctor had not run any tests on me. This doctor ordered the usual bloodwork which includes testing for both reproductive hormone levels as well as various metabolic hormone levels because PCOS usually disrupts both of these sets of hormones. However, when my results came back, while my reproductive hormones suggested PCOS, my metabolic ones did not. To determine whether or not I did, indeed, have PCOS, she ordered an ultrasound of my ovaries. Upon inserting the ultrasound wand and finding an ovary, the ultrasound tech pointed out the image on the screen: the characteristic “string of pearls” indicative of PCOS.
The ovaries of someone with PCOS are like the wheels of a car stuck in the mud that are spinning with all their might but cannot get unstuck. In a healthy woman, one ovary produces one follicle around one egg each month. The follicle expands, and once big enough, releases the egg. With PCOS, the ovaries try their best to ovulate, continuously forming follicles around eggs, but none reach full maturation and no egg is released. The enlarged follicles remain in the ovaries, lining the edge of the ovary and forming this “string of pearls.” It should be noted that there are no actual cysts involved in PCOS, despite the name.
Having confirmed that I did, in fact, have PCOS, the doctor then insisted that I go on hormonal birth control to essentially shut down my faulty reproductive system. This is the standard approach taken by most doctors for this disorder, that affects about 1 in 10 women.
Left untreated, PCOS increases the likelihood of uterine and possibly ovarian cancers, uterine thickening, and infertility.
She failed to mention that I was also at increased risk for heart disease, obesity, and type II diabetes.
The only information I received about other management options was a single line on a handout she gave me that day that said if I lost 10% of my body weight, I might resume ovulation. At the time, I weighed a whopping 115lbs. I did not have 10% of my body weight to lose.
Being left with no other options, I then proceeded to try out hormonal birth control options. I tried two kinds of birth control pills. Both left me with splitting headaches and made me horribly bloated. I also found myself bursting into tears for absolutely no reason. The doctor then suggested that I try NuvaRing because it contained a lower dose of hormones. It also had the added advantage of not requiring that I remember to take it every single day. I tolerated it much better than the pill options, and so continued it without giving much thought to its possible downsides.
As the years went on, the downsides started popping up. I started experiencing frequent yeast infections, common for users of NuvaRing. At the time, I chalked it up to a course of Ciprofloxacin I had taken due to a kidney infection, but the yeast infections popped up for years after that course of antibiotics, despite trying to rebalance my microbiome with ample probiotics. I also became increasingly sensitive to minor irritants down there, like tampon strings, which would start to have a nails-on-the-chalkboard feel as the days of my period went on.
Most intriguingly, I started noticing that on the week I did not have NuvaRing inserted, I felt calmer and happier, and I slept better. The off-week of all cyclical hormonal birth control coincides with your period, which is generally not your best week, so I began wondering how I might feel in the other parts of my cycle if I stopped using NuvaRing.
Lastly, the strangest side effect of all occurred in my mouth. Every time I went to the dentist, my hygienist insisted that I must not be flossing regularly because my gums were showing signs of gingivitis. I floss every day and have rather impeccable dental hygiene habits and yet, my gums were a mess. But it would take years to pin this to my birth control.
And for years, I thought I had to tolerate these various nuisances because I thought hormonal birth control was the only option I had to manage my PCOS.
But then I joined a local CrossFit gym. At the time, the paleo diet was all the rage in the CrossFit world. I read up on it a bit and decided to give it a try. After several months of eating 80-90% paleo instead of my previous diet which consisted mainly of processed, high-glycemic index food, I started noticing that my acne and some pesky body hair, both common symptoms of PCOS, began subsiding. Interesting, I thought.
I started looking into it more, and realized there were people who were managing their PCOS with lifestyle interventions alone.
Emboldened, I decided to just quit NuvaRing cold turkey, and without much of a plan. The first cycle went fairly well! My period arrived 30-something days after my last birth control-induced period. Not bad! But then another 60 or so days went by. My PCOS symptoms were getting out of control, I had chronic PMS, and I had no period in sight. Defeated, I grabbed a NuvaRing out of my refrigerator and inserted it.
Later that year, at my annual exam, at about 36 years of age, I asked my gynecologist about getting off of hormonal birth control. I explained that I was concerned about the increased risk of blood clots and strokes, that NuvaRing was starting to cause discomfort, and that I felt like it was affecting my mood.
Her response was, “You have PCOS, and there’s nothing wrong with being on birth control forever. You’re on the lowest dose, and you don’t smoke. And when you want to get pregnant, well, you’ll probably need IVF anyways.” She would not entertain any further discussion on the matter.
Remember when the news broke that the Johnson and Johnson COVID-19 vaccine was causing blood clots? The highest risk group was women 30 - 49 years old, with 1 in 100,000 experiencing clots.
The risk of blood clots from NuvaRing… potentially as high as 1 in 1,000 per year.
And yet, my doctor said there was nothing wrong with taking it forever.
The warning that greets you on the NuvaRing website
Still set on someday getting off of hormones, I began reading all that I could about managing PCOS holistically. I also started getting more serious about my meditation practice and began exploring podcasts and books on mental health.
I became fairly convinced my underlying cause of PCOS was systemic inflammation, fueled largely by stress and lack of sleep and exacerbated by diet when I went on sweet tooth sugar benders. I also better understood the nutrients that I was likely deficient in given my PCOS, and which herbs would be most helpful to help with my hormone imbalances.
Then, in September 2020, with a pandemic raging, I decided it was the perfect time to try to get off of hormonal birth control.
I downloaded the Natural Cycles app to be able to track basal body temperature (BBT), so that I could confirm ovulation. If you’re unfamiliar with BBT, it is really cool! You take your temperature first thing in the morning. Your temperature during the follicular phase (the first half-ish of your cycle) is lower than your luteal phase (the phase between ovulation and menstruation). The increase in temperature between the phases occurs if and when you ovulate. If there’s no temperature rise, you haven’t ovulated.
In addition to tracking BBT, I concocted my own supplement plan that included spearmint tea and PCOS-specific herbal tea to help balance my hormones; turmeric and omega-3 fatty acids to manage inflammation; and a “fertility blend” supplement from GNC that includes magnesium and zinc which women with PCOS tend to lack, B vitamins which are helpful for insulin resistance (most women with PCOS have some degree of insulin resistance), and chasteberry, which supports progesterone, a hormone that I tend to be deficient in. I also set an intention to minimize my consumption of sugar, which is highly inflammatory, and to continue to eat my usual paleo-ish diet based around lean protein sources, fruits, vegetables, healthy fats like nuts and avocado, and gluten-free whole grains like oats and buckwheat (high in magnesium!). I continued to utilize meditation, yoga, and mindfulness techniques to manage stress. I also committed to trying to be better about getting enough sleep. This last one is an eternal battle.
My first three natural normal-ish lengthed cycles, as recorded by the Natural Cycles Apps.
Twenty-six days after my last hormone-induced period, the app registered ovulation, and 14 days later, I got my period. Knowing what happened last time, I celebrated with serious caution. But then, on day 20 of my next cycle, the app again confirmed ovulation! My second cycle was 33 days long, and technically within the “normal” range. I celebrated this joyous win! And every single time my app registers an ovulation, I celebrate with that same joy.
All those pesky downsides of using NuvaRing quickly subsided. When I visited the dentist, the hygienist lauded my healthy gums. Surprised at this turn of events, I tried to figure out what had changed. The only thing I could think of was coming off of birth control. When I got home, I googled “hormonal birth control and gum health.” Sure enough, there’s a connection. I hadn’t needed to floss more or better or change toothpaste. I just needed to get off of synthetic hormones.
I’d like to say that my cycle has stayed within the “normal” range (35 days or less) and it was smooth, healthy-gummed sailing from there. But last spring and summer, I had a cycle that lasted 57 days, followed by another that was 93 days. Faced with the possibility of having to resume birth control, I looked at what was left to tweak.
I found only one thing. Caffeine.
While information sources were decisively clear that things like sugar and refined grains should be avoided by women with PCOS, caffeine and alcohol were always mentioned as, “use in moderation, but they likely aren’t helpful.” I had already cut out alcohol because it made me feel like crap the next day without fail, even in moderation.
And then things went a little haywire…
Caffeine was the only vice left. So, I reluctantly cut out coffee and hoped that did the trick.
I was both overjoyed and deeply saddened when cutting it out did, indeed, result in my cycle getting back under 40 days.
When it was time for my annual exam, I decided I did not want to go back to the woman who had not entertained my request to get off of birth control. I decided to see a doctor I knew through CrossFit and who several friends recommended as having a more holistic approach. She welcomed my desire to get off of birth control and gladly ran a full panel of tests to check my hormone levels. However, she wanted to just replace birth control with other prescriptions to manage my last remaining symptoms. I tried one of the prescriptions and stopped it shortly thereafter because it made me lightheaded when I worked out. Instead, I just continued to tinker with my supplement and herbal protocol and doubled down on stress management and sleep. That largely did the trick.
This past spring while on Semester at Sea, I ended up using coffee to counteract the drowsiness caused by seasickness medication. Surprisingly, my cycles were even shorter (32-ish days). I am fairly certain that my lower stress levels on the safe, utopian little bubble of our ship allowed me to resume caffeine consumption without knocking my cycle off kilter.
This has further solidified my belief that my PCOS is driven by my “inflammation bucket.”
As long as this bucket is not overflowing, my cycle is relatively normal, and I successfully ovulate. But if I add enough stress, sugar, sleep-deprivation, and/or caffeine to the bucket, it overflows, and my hormones rebel. Lessening one of these things enough lets me increase the others if needed or desired.
After almost two years of working on this on-going PCOS experiment, I understand why all of the gynecologists I have seen have not wanted to truly tackle this issue holistically. It’s hard. It’s nuanced. It’s individual-specific. It ebbs and flows as my life changes.
But almost 28 years after my first period, my body is finally functioning as it was intended. And I get to celebrate a successful ovulation and the amazing things our female bodies can do about every 35 days.
As mentioned in my previous blog post, I have gone back to school to position for a career pivot. My hope is that I will be able to become the practitioner that I sought out but could not find on my quest to manage PCOS without synthetic hormones. I can’t wait to celebrate successful ovulations and the amazingness of well-functioning female bodies over and over again with my future clients.