My PCOS Diagnosis Journey

Why I’m writing this post

Just before Christmas 2019, twelve years after I first went to a doctor with concerns about it, I was diagnosed with PCOS. 

PCOS, or polycystic ovarian syndrome, is a fairly common condition with a lot of, frankly, embarrassing symptoms. 

It’s a hormone disorder that is characterized by having extra androgens. This can cause cosmetic issues (facial hair, thinning head hair, greasy skin), health issues (obesity, diabetes, heart disease, cancer), and difficulties conceiving. It’s an isolating disease because so many of the symptoms are stigmatized. 

I debated with myself about whether or not to write this post. 

“Do I want to talk about such personal experiences on a public platform?”

No, not really.

But after I became aware of my diagnosis, I benefited from other people sharing their stories and experiences. I still do. So, if I can help to make other people feel less alone in trying to deal with this, then I feel like I should. I’ve joined a couple of groups for people with PCOS, and it has been comforting to know that other people are dealing with the exact same things that I am. I’m not alone in this.

In the UK, PCOS affects 1/10 women, so an important thing to know about this syndrome is that there are a lot of people experiencing the same symptoms. And, for anyone who does not have it, they probably know someone who does – even if they don’t know it.

Trying to get a diagnosis

When I first went to my doctor, I was told that I didn’t have PCOS. She said that I “just had lazy ovaries,” which obviously wasn’t helpful. And it was incorrect. This resulted in many years spent fighting against my body; dealing with weight gain, facial hair, and fragile hair on the top of my head without knowing why I was experiencing these symptoms. I thought that I was doing something wrong, even though I was trying very hard to do everything right.

The symptom that has affected me the most has been weight gain. I’ve been on countless diets since I was ten years old. I remember looking at a ride and thinking “I’m 10, so I’m young enough, but I think I might be too heavy for it.” At ten. I had gone from being underweight to being overweight, without spending much time being in a “healthy” weight range. 

When I had a BMI that was just above 25 – between being healthy and overweight – I was going to the gym 3-4 times a week, in a marching band, a drill team, and walking regularly. I was active and healthy. My diet wasn’t perfect, but it was good. I was a vegetarian then, so I had to be more aware of what I ate. But even then I couldn’t get down to the 100 pounds that my doctor wanted me at.

I felt completely demoralised and embarrassed. I felt like I had failed and I started to not care for my body properly. I stopped exercising regularly and I ate a lot of comfort foods.

One of the tough things about PCOS is that if you’re overweight, your symptoms are worse. Which is unfortunate as one of the symptoms is weight gain. This creates a cruel cycle: losing weight will help to reduce symptoms, but if you’re already overweight then it’s difficult to lose weight.

Furthermore, being overweight can affect how people are treated by doctors and whether or not your concerns are taken seriously. I’ve experienced this firsthand on multiple occasions.

If I had received my diagnosis when I first went to my doctor, I would have accepted that I was unlikely to be thin, but I could still be healthy. I would have been able to understand my body instead of being frustrated with it. The doctor who wanted me to weigh in at 100 pounds was also the same doctor who dismissed my PCOS concerns, and looking back it’s baffling that she managed to miss it.

Receiving my diagnosis

A little over a year ago, I was having routine blood work after surgery and I asked my nurse practitioner if he could test me for PCOS. The surgery was to have my gallbladder removed; I believe that the gallstones were related to my PCOS due to on-and-off dieting. He said I didn’t look like I had PCOS at a glance, but he happily put the request on the blood form. After the blood work had been processed, I had a call from the doctor confirming my diagnosis. A free androgen index of over 5 confirms it. Mine was nearly 12. 

I was relieved and simultaneously frustrated, but I felt like I could relax for a bit. I finally knew what was going on with my body. 

I relaxed for longer than I had intended to. This has been a tough year – for everyone. I haven’t done too much research about PCOS yet, instead focusing on other things.  

My plans post-diagnosis

I plan on learning more about it in the coming year and becoming healthier, while also being kinder to myself. I’ve been following body-positive people on social media and that has helped a lot with how I feel about my body. Seeing their posts and reading about their struggles has inspired me to become active again. I’ve been exercising regularly and it’s been great to focus on what my body can do instead of obsessing about how it looks.

Body confidence is something that I still struggle with, but I am working on improving it. I’m planning on making this journey to wellness a much more positive one than my PCOS diagnosis journey. 

The most important thing I’ve learned from this experience is to listen to myself and to advocate for my own health, especially if I feel like my concerns are being brushed off. 

Cosmopolitan magazine (in the UK) has also been exploring body confidence and PCOS specifically in recent issues. Reading these articles have been empowering, comforting, and educational. With such a large magazine talking about the issues that affect people with PCOS, hopefully this will have the bonus of destigmatizing symptoms of the condition – which could have the additional benefit for people who do not have PCOS, but may have some of the symptoms.

For anyone in the UK, there’s a charity called Verity that supports people with PCOS. They have resource books that you can order to understand the condition better and they also have Facebook groups for sufferers of PCOS to talk with each other.