UPDATED in 2017: Several months later, I went to see an endocrinologist, we retested my blood work and deduced that I was either misdiagnosed or was able to balance out my hormones in a short amount of time.
December seems to be the month where I get diagnosed with health issues (MS Dec 2014). This December, I have been diagnosed, in the words of my gynaecologist, with “a high probability that you have PCOS, polycystic ovary syndrome”.
Ok so first to save you the trouble of googling what PCOS is here is the webmd definition:
Polycystic ovary syndrome (say “pah-lee-SIS-tik OH-vuh-ree SIN-drohm”) is a problem in which a woman’s hormones are out of balance. It can cause problems with your periods and make it difficult to get pregnant. PCOS also may cause unwanted changes in the way you look. If it isn’t treated, over time it can lead to serious health problems, such as diabetes and heart disease. Most women with PCOS grow many small cysts on their ovaries. That is why it is called polycystic ovary syndrome. The cysts may not be harmful but lead to hormone imbalances.
In other words, my lady balls (ovaries) are highly confused.
Here is how this year has gone for me. I decided to go off birth control in April. Not because we are trying to have kids but because I choose to continuously optimize my health and I didn’t want to rely on birth control to regulate my hormones monthly. I’ve been on birth control since I was 18 years old. That’s 16 years of something chemical regulating my body. In my quest for optimized health this was my next logical step. I didn’t have a plan though. I thought I could just go off of birth control and everything would be fine. For the first few months everything was fine. Then my period stopped and I had a good panic attack this summer. I thought I was pregnant. And although it would be more than ok if I was and we are ready for children it’s not our current plan. We would like to be old fashioned and get engaged and married first. So I had a few teary days or worry and then finally bought a pregnancy test and shook and cried while I peed on stick.
Buying your first pregnancy test (I thankfully have never had a scare before) is like buying your first package of condoms or a yeast infection treatment. Ladies you know what I mean. It’s awkward and a purchase at the drug store where you don’t really want to make eye contact with the cashier. I threw my shoulders back and smiled big, making eye contact with her. She smiled back and said enthusiastically “Have a great evening.” I thankfully emitted “this is exciting I’m really hoping to be pregnant” vibes so she gave me my energy back to me. I got home, peed on the stick, texted my best friend and the negative result came back and a sign of relief.
Then October came and a Thanksgiving long weekend at my boyfriend’s family cottage. My period decided to make a resounding appearance. It’s as if it walked in the door with big bravado and screamed “I’m HERE! Did you miss me!?” The cramps rocked my body. I hadn’t had cramps like that since my teenager years and I’ve had pretty bad ones over the years. I spent a day curled in the fetal position with a hot water bottle on my abdomen for relief. It’s crazy that birth control has been the only thing keeping me from being completely out of commission for a day.
Later that month I was rocked with cramps one late afternoon at work. Things had been extremely stressful at work so I thought my body was just reacting to the stress. I left work around 4 in the afternoon and came home to crawl into bed. That’s when the cramps starting rocking my body anew. I actually thought I was in labour. It felt like something was squeezing my insides. I had just had my period 2 weeks before so I didn’t think that was what was happening. The pain would be so intense for 5 mins and then dissipate. It kept hitting me in waves every 20 mins then every 10 mins then every 5 mins and then every other minute I was screaming and crying in pain. Mike came home from work and asked if I wanted to go to the hospital, when I refused he asked me to take an Advil. 2 years ago I went to the hospital and was diagnosed with MS, so I have a bit of an aversion for hospitals.
After 2 hours the Advil still hadn’t helped. I asked him to get my Clary Calm roller bottle from doTERRA which had been helping with period cramps over the past year. After 10 mins the cramps had completely dissipated which was another amazing discovery in itself! I managed to fall asleep as the pain became a dull lull. After 3 more days of pain, Mike urged me to go see a doctor. Because I’ve been healthy all year I hadn’t found a family doctor in Ottawa yet. I took myself to a walk-in clinic and the doctor requisitioned an ultrasound. They rushed my results and I got a call the next day to come back in. The walk-in clinic doctor let me know they found a bunch of cysts on my ovaries that could mean a possibility of PCOS. He sent me to a gynaecologist and a week later got an appointment. There I was told that to confirm the diagnosis I would need to have blood work done between the 3rd – 5th day of my next period. I was off to Patagonia at the end of the week for the majority of November so the testing was put on hold.
Cue December, another ultrasound at a reputable women’s clinic and then my period came so I was able to go for the blood test to look at my hormone levels. The follow up appointment with the gyno was a week later and the words: “there is a high probability that you have PCOS, polycystic ovary syndrome” were heard. I asked what would actually confirm the diagnosis and he let me know that it would include a biopsy of the cysts and that’s not done these days. Based on the ultrasounds & blood test they can “conclude” the diagnosis.
Here is where my faith in Western medicine continues to fail. The gyno’s next words were “Ok so we can put you back on birth control and if indeed you have an insulin resistance which could be a contributing factor (I have to have another blood test) we can put you on diabetes medicine.” I didn’t even try to explain that I didn’t want to rely on pharmaceuticals.
I tried asking questions to understand the disease more but was rushed fairly quickly out of the room.
Robyn: “What are the causes of PCOS?”
Doctor: “It’s genetic”
Robyn: “What is causing my hormones to be off balanced?”
Doctor: “As I said probably genetic”
Robyn: “Where should my hormones level be?”
Doctor – No answer
Robyn (thinking, ok let’s try this again): “What can I do to regulate my hormones through stress management or diet”
Doctor – Blank Stare – “Birth Control or Diabetes Medicine”
I thanked him for his time and asked for copies of my tests so I can take them to my functional medicine doctor to review and either have more tests or discuss a treatment protocol I can try.
On one side I’m relieved that I have a diagnosis. After a ton of research over the past 2 months I’ve found that so many women live with PCOS without knowing it. It’s usually discovered when women try to get pregnant. I feel a sense of relief that I have more information of why I’ve potentially had so many mood swings this year, beyond my micronutrient deficiency that could be pyroluria.
So I’ve had a good cry of frustration that I have another health “issue” to live with and now I’m figuring it out. It’s another sidekick to teach me more about my body, this vessel that supports me on this earth.
My first step was to dive into some of Melissa Ramos‘s content. As a self-declared poop and hormone whisperer who appeared on my podcast earlier this year I knew she has amazing resources. I signed up for her free PCOS guide and started receiving an email drip campaign of content. She brought up amazing resources and tips.
My first course of action is to support my adrenals as I figure this out. To do this I came to terms that I have been consuming too much coffee.
Last week I went cold turkey (the same week I got my period), so needless to say detoxing off of caffeine while having ridiculously strong cramps is almost unbearable. I was not myself at all. I replaced coffee with Melissa’s Hot Chocolate Recipe and one cup of Matcha Green tea a day. I also mixed up a mason jar of her Super Power Shot that is explained to help reset the body. I’m on week 2 and starting to feel more myself after just 2 tactics. I can’t wait to dive more into research and start more habits or protocols to continue to support this crazy body of mine.
When I announced my MS diagnosis back in 2014 I received amazing resource recommendations and words of comfort and encouragement. So in December 2016, come at me with all the positive vibes & resources you have. Much chronic illness love.
One thought on “Diagnosed with PCOS”
I’m sending you so much LOVE and virtual hugs Robyn! I appreciate how you so openly share about what you’re going through and every time I read one of your blogs or see you on camera I feel uplifted. <3 <3 <3