This past February, it was two years since I was (finally) (unfortunately) diagnosed with Polycystic Ovarian Syndrome, or PCOS. When I was first given the results, on that no-longer-regular afternoon, a wave of relief swept through me, as now I finally knew what was ‘wrong’ with me, and almost as importantly, had been correct despite numerous doctors’ misgivings towards the likelihood of me having the syndrome. Three days later, I called my mom and my aunt hysterically crying over the diagnosis, as the reality had sunk in. Being right wasn’t as much fun when it involved a lifelong syndrome that interfered with my ability to get pregnant, caused weight gain when I already had a fragile mindset around body image, and led me to produce more hair on my face than most men are able to do, while simultaneously losing the hair on my head every time I showered. I mean, this was a real treat.

I had suspected for years that I would have difficulty getting pregnant. Call it intuition, or the years I’d spent with irregular periods, depression, an eating disorder, and out of control hormones (so many clues), but regardless, I knew for a long time something wasn’t right. I’d ask each new doctor to run tests, and each time I’d be told that everything was normal. Once when I was 25, I was told that I was anovulatory, meaning I didn’t release an egg each month. I remember wondering if this was a problem, but it was passed over so breezily that I didn’t think to be alarmed. Plus, I wasn’t in a place to be having children, so it wasn’t a big deal. I also was in the midst of dealing with anorexia and an eating disordered mindset, so part of me figured this was my fault, and didn’t want delve further into it. I deserved it after all—look what I was putting my body through.

The history was all there. When I was 13, I had a unibrow, extraordinarily greasy hair, even after just a day of not washing, and a chubby little body. I started my period, later than most girls, that year as well. Usually each month, I would have such a terrible cycle, I would end up bleeding through my Catholic school girl uniform. Luckily they were dark colored skirts, so it didn’t seem to be noticed when it happened. I became very good at discreetly cleaning blood off chairs when it was particularly bad. Inept at how to deal with this, I was too embarrassed to ask anyone for advice. I just kept hoping each month that I could go without bleeding all over everything, or least not get caught. I discovered tampons a year later, which when used in conjunction with those terrible, bulky pads, got me through high school without having the same issues.

By 15, I was receiving electrolysis on my upper lip and chin, as I had excessive facial hair. Rita, the kind lady who drove electrical impulses into the ever sensitive upper-lip skin, resulting in the longest 30 minutes of my life each time I visited, would frequently tell my mom that something just wasn’t right. A 15-year-old girl shouldn’t have this much going on. She was convinced my hormones were off. My mom took me to the doctor, and thus began the years of ‘everything is normal’.

So here I was, at 31 years old, being told, finally, that I did indeed have an issue that explained so many of my symptoms. As I lay on the ultrasound table, the woman holding the stick shoved up inside of me immediately remarked that there they were—my little cysts on my right ovary. I left the appointment knowing what the call was going to be, and so it shouldn’t have been a shock when it was confirmed PCOS a few days later.

I was brought back into my doctor’s office for a chat about treatment. Let me stop here and explain that the only reason this was caught was because my doctor was, very unfortunately, in the middle of a cancer battle. She had a nurse practitioner who was seeing most of her patients. I was in for my yearly exam, and when I mentioned the same things I usually mentioned, the nurse practitioner ordered the ultrasound. It was decided that I should start on Metformin, a drug used to treat insulin resistance, and is frequently used in PCOS treatment as there usually is an insulin piece that goes along with the syndrome. I’d also found out that I had an irregular pap smear that required a biopsy of my cervix. My doctor would have to perform that, so another appointment was made.

A week later as I sat in the chair awaiting my cervix snip (it’s as awful as it sounds, it still makes me weak to think about it), I brought up the diagnosis to my doctor. I’d been previously discussing a job I was hoping for that involved moving to Barcelona. She paused and looked at me.

“You must not be that serious about your boyfriend if you are thinking of moving to Barcelona”, she said.

I’d been dating Jason just over a year at this point, and it was serious, although we hadn’t discussed marriage (we didn’t even say ‘I love you’ until 13 months in, so I think we had been saying it for like 2 weeks at this point. Marriage was far from our minds).

“Well, I am serious about him. This is a dream I’ve always had though, so I’m hoping it will all work out.”

“Well you’re 31 and have PCOS. You aren’t that young. If you want a baby, you need to be thinking about what your priorities are. You can’t do both.”

Followed by:

“Don’t come back to me in 5 years’ time crying about how you don’t have a baby because I will remind you of this.”

My doctor had just told me that if I chose to move abroad to follow a dream, I could throw away my other dream of being a mother someday. In an already very emotional time, this was not what I had wanted, nor planned to hear. She ended our conversation asking about my period cycles. I told her they were pretty irregular, but when I gave her the frequency of irregularity, she scoffed.

“That’s not that irregular. Why would even think you have something like PCOS when you just have a slightly longer cycle length?”

At this point, I should have said something along the lines of, ‘I don’t know. The better question is why you’re questioning me about wondering why I think I have something THAT I FUCKING FOUND OUT I HAVE.’

Instead I think my face grew red and I awkwardly stammered an answer, embarrassed by why I thought I had a syndrome that I indeed had. It was an exceptionally shitty experience, and I was a basket case for days afterwards. I did, however, vow never to return to that practice, as I was not going to be belittled or have to defend a clearly identified case of PCOS. I had the cysts for God’s sake (cysts are not a requirement to have PCOS–there are a number of factors that go into it).

It’s already pretty terrifying to be told that having children probably won’t happen naturally, at least not initially. Rationally, I knew there are tons of drugs that assist women with getting pregnant all the time. PCOS isn’t even all that uncommon—about 10% of women are diagnosed with it. But in those initial stages, it’s raw. I’d have to actively plan out when I want to have a baby with doctor’s appointments and medicines and hormonal difficulties that come along with this. There isn’t just trying for the sake of trying. It’s calculated. At 31 and unmarried, it was scary. It made me wonder if I could not, in fact, have my dream of living abroad. If maybe my entire focus did need to be on becoming a mother. I had to cry it out and spend some time evaluating for a while.

During that time, I found out I had been passed over for the job in Barcelona, as they had decided to hire internally, which crushed me. I had fully planned my life there, living on the beach, and going to happy hours with the staff. Not getting that job threw me. My grandma had a stroke a few weeks later, and was gone a week after that. I had been extremely fortunate in my 31 years to have most of my grandparents around. I had lost my grandpa when I was 6, and only had a few memories of him. Twenty-five years later and I was losing another grandparent. I was lucky, but it was hard. She was 94 years old, so she lived a long life, but if you knew my grandma, you just kind of assumed she’d live forever. Or at least for another 4 or so years. I hate to say, at 94 years old that no one saw it coming, but no one saw it coming. I struggled with her death. I struggled with losing Barcelona. I struggled with being diagnosed with PCOS. It was a dark time.

It was a dark time for Jason and I as well. Like I said, we’d been dating for a little over a year when this storm hit. He had just recently graduated from his Master’s program, which had made for a tough year of dating, especially as a new couple. We were looking forward to being able to relax a little when all of this happened in a 6-week time frame. I was drowning and I didn’t know how to make it better. Jason had never dealt with something like this, and he didn’t know how to comfort me. I was also, I guess, ashamed of the PCOS. No one wants to tell the person they are dating that they don’t know what having a kid is going to look like. We ended up doing some counseling which helped us try to communicate with each other better. Time passed, I continued to get therapy to cope with all the loss, and we grew. It wasn’t an easy time period, and it didn’t disappear immediately. It took a while but we got through it.

I didn’t deal much with the PCOS much after that. I took my Metformin, but I never knew what it was or wasn’t doing. I took the birth control pills I was prescribed that were meant to be better for PCOS-ers. I asked questions, but honestly many doctors aren’t well versed in PCOS. It’s such a vague syndrome, with many symptoms that vary between women, and the knowledge level isn’t always there. Everyone always said to let them know when I wanted to get pregnant and they’d give me Clomid, a fertility medicine. I didn’t look like the typical PCOS girl so I think often it was brushed off as not being a big deal, and so I didn’t do much research or bother to learn much about what was going on inside of me. I was thin and worked out a lot, I’d always eaten healthy (possibly the positive of being eating disordered for all those years), and I waxed enough that my facial hair wasn’t usually on in full display.

Jason and I got engaged in December of 2015. I bought my wedding dress less than two weeks later. When I bought my dress, I was at a pretty thin weight. I had trained for two half marathons that year, my last one being in October. Running long distances had kept me in good shape for years. I’d planned to run one again that spring, especially with our wedding coming up, to maintain my weight. However, I injured myself shortly after my half in October and it impacted my ability to train for the April half-marathon that had become a regular for me the last couple years. I went to a chiropractor, but after a couple of months it was clear that I wasn’t going to be able to make the April race. My running came to an abrupt halt, that ended up lasting nearly 10 months. I upped my yoga classes to 4-5 times a week, doing high intensity workout videos on other days. I’d always been active, so although I wasn’t running, I kept up the working out.

I started gaining weight that spring. It wasn’t a ton, but it was enough that I could feel the difference in my clothes. I panicked and ran straight to my doctor who sent me to a nutritionist. The nutritionist was a really nice person, but all the information I was given was really overwhelming and I didn’t know how to make sense of it all. It seemed like everything I ate was wrong and I’d have to change everything I did. I couldn’t understand how this could be possible, as I was one of the healthiest eaters I knew. How could I be eating wrong? I made a few notes and changed a few things around, and that worked for a little bit. I started to feel better.

It was short lived. By the summer, I had packed on nearly 15 pounds from when I bought my dress. I was working out all the time, I was eating mostly clean, I was doing what any other person would do to lose weight, and I kept gaining. It wouldn’t budge. I hated trying on my dress because it no longer fit. I had to get it taken out. I cried, I freaked out, and I didn’t know what to do. I’d taken myself off birth control and Metformin because I hadn’t felt like there was any real use for them. I didn’t need birth control because there wasn’t a birth to control. I didn’t really know what the hell Metformin was doing. I was taking so many medications by June that I just had had it. My sister suggested that maybe the birth control was helping with controlling my weight and when I came off them, it caused me to gain again. So, with a month to go before my wedding, I started popping those pills every day in the hope that come September 4^th, I’d fit into that dress. Between that, being in a new country, walking everywhere, and not keeping much in groceries in the house, I lost a little bit of weight. It wasn’t where I wanted to be, but it was enough that my dress fit. As soon as the wedding was over, I came back off the medicine again and the weight returned, only this time with a vengeance. By October, I was the heaviest I could remember being since before my eating disorder had taken over ten years prior.

Looking back on all of this, I should have done more research into PCOS, but honestly, it hadn’t seemingly affected my life all that much (it was though, I think I just hid behind it), so I just continued on with what had always worked for me in the past. Once it started to affect everyday life, more so than what I was willing to put up with, I knew I was going to have to make some changes. I couldn’t stand to look into a mirror on most days as all I saw were globs of fat pouring over my pants. My stomach stuck out in shirts. I was uncomfortable in everything I put on. It’s a testament to how far I’ve come that I didn’t start restricting, because I was getting desperate by that October. I found a gym that specialized in high intensity and strength classes. Both of those things are supposed to have higher success rates with PCOS women. I started going to classes 4 times a week. I joined PCOS support groups on Facebook and started reading about foods that were good and foods that weren’t (essentially everything is not good beyond protein and vegetables).  I had a nutrition counseling session with my gym.  We made an appointment with a fertility doctor to start figuring out what that was going to look like for us (his first piece of advice was to lose the weight that I had gained).

So, I made changes. A PCOS friendly diet/lifestyle means dairy-free, gluten-free, soy-free, and sugar-free. I’d suspected for a while that gluten was not my friend, and possibly not dairy, but I had hated the idea of being ‘that person’ who was gluten-free.  It turned out, after gaining as much weight as I had, I no longer cared about being gluten-free. Bring it the fuck on. I changed my morning breakfast from Greek yogurt to a green smoothie with protein powder. I’d known nothing about protein powder prior to Facebook reading and my meeting at the gym. I had to find a pea plant one, that was free of all of the above ingredients. It turned out I actually really enjoyed it, and it kept me full. I started measuring portion sizes with measuring cups, and meal prepping my lunches for the week. I stopped eating carbs past lunch. Dinners were just protein and vegetables, which is what is best for PCOS overall. I cut out Diet Cokes all together and started drinking at least two liters of water a day. I only drink one cup of coffee if I drink it, and I no longer put artificial sweetener in it.  My sweet tooth gets fixed with a piece of the darkest chocolate that I can find in the store. I also went back on Metformin. I have the insulin resistant strain of PCOS, and the Metformin helps my body regulate things (that was me learning about Metformin). I had hated how sick it made me feel, but my dosage was reduced and I manage it fine now.

It hasn’t been easy. Feeling guilty if I drank a beer or wine sucked. The headaches from cutting out Diet Coke sucked. Knowing this was a forever thing, not a temporary fix, has really sucked. It took awhile to work through the ‘this entire thing fucking sucks’ phase. It’s often been frustrating, overwhelming, and infuriating. I’ve been the healthiest person I’ve known for years. I always ate the right things, worked out consistently, and did what you’re ‘supposed to do’ to be healthy. My body was betraying me. Me, the girl with the eating disordered mind, was gaining weight at a rapid rate because my body was fucked. I had to see a fertility doctor, because my body doesn’t do what it’s meant to do. I have a very supportive husband. But that didn’t mean that I didn’t still struggle with the fact that we have to spend money for frequent appointments every month to try to have a baby. Or that I had to inform my principal that we are trying to have a baby so that I can make all the appointments. Most people don’t have to communicate to their superiors something like that. It’s not really anyone else’s business, and I like to keep things that way. I didn’t have that choice anymore. I’m costing us a lot of money to bring something into this world that’s going to cost us a lot of money. I battle with feeling less than. Less of a woman because my womanly functions require assistance to do just that—function.

My restricted diet brought up memories of a time of a restricted diet for a different reason. My inflexible eating disordered thinking likes to raise its dormant head, to sniff the possible weakness it smells. Because let me tell you, in the beginning, I could tell it was there. When I had to skip a workout for good things, because we have friends in town, or people want to go to dinner with me, I would silently scream in my body. A bad mood would take over me easily, convinced that missing that one workout is going to make me fat again. That all my hard work would fall apart because of that one workout, or maybe a handful of missed workouts. During these spells, I always try to use positive self-talk as best as I can, and I try to stay rational, as eating disordered thinking is not that. And when all else fails, I try to have patience with myself and remember that I am a constant work in progress. The reality is that this new way of eating is my new life, and I’ve had to figure out how to balance that against my eating disordered old life.

Between the diet change and the increase of exercise, after about a month I started to see changes and the scale started to move. By the spring, I was at a weight I was comfortable with. I was more fit and had more muscle than I had had in what feels like a very long time. I’m still reading more on PCOS and trying to make sure I take the right supplements (but good Lord, there are a LOT of possible supplements out there). I sometimes still want to punch my old doctor in the face, and some of the doctors that followed for not having more information. Then I remember that isn’t fair. It’s a journey, and one that doesn’t have a clear cut path. It hasn’t been easy, and it still isn’t easy, but you learn and you move forward. There are far worse things, and while this isn’t a fun one to have, it’s certainly helped me be a stronger and more empathetic person, because you never know what someone is struggling with.

One day at a time, amiright?