Wellbeing / Wellness

I was diagnosed with PCOS at 32 – here are the five big lessons I learned

TW: This article discusses disordered eating behaviours.


 

When I was 29, I noticed some weight gain.

It was nothing unusual. My weight had always fluctuated. If I was ever bothered by it, I simply swapped my 3pm chocolate for an apple and tried to add a relaxing beach walk to my week. Easy.

Well, this weight wouldn't budge. In fact, when I tried to do something about it, I only gained more.

I'd never been on a structured diet before. I decided it was time to try. I did ketosis, intermittent fasting and Dukan. I went to see a dietician who crafted a specialised diet for me. After the dietician recommendations didn't work, I started restricting heavily, and I would go days consuming just a single salad.

I started exercising like crazy. I would spent over an hour at the gym, three to four days a week, plus 1.5 hour walks on the other days. I was glued to my Apple Watch step counts.

Nothing worked. I just kept gaining more and more weight.

I was exhausted. I'd fall asleep on public transport. If I made it to 3pm without accidentally falling asleep at my desk, it was a rarity.

"Sometimes just breathing felt like an effort. My hair was falling out in chunks."

When I reached the point that I was very nearly considered medically obese, I finally decided to see my doctor. Something was wrong. I went to two GPs and three specialists. After 18 months and ruling out everything from Hashimotos to adrenal and pituitary tumours, it turns out that it was just run-of-the-mill PCOS.

PCOS is a hormonal syndrome that causes ovarian cysts. People with this condition can experience irregular periods, excessive weight gain, insulin resistance, diabetes, infertility, hair loss on the head, heart and blood vessel problems, excess facial hair, acne and depression – among other symptoms.

It's one of the most common hormonal diseases for females, affecting one in nine of us. Yet, it took over a year and half to diagnose this common condition?

The whole experience was highly traumatic. Doctors didn't believe me. Colleagues thought I was exaggerating. Friends told me I should "just be happy in my own skin".

But at the same time, I learned some very valuable lessons that will stick with me for life.

 

Trust yourself, you know your body better than anyone else

In these situations it's easy to feel like you might be making it up. Especially when some doctors are less than sympathetic.

So many people were convinced my symptoms were being caused by a poor diet. The first few professionals I saw didn't even want to test me for anything. The medical gaslighting is real.

At the same time, there were people in my life pushing a form of toxic body positivity on me. Saying I should learn to "love my body". The issue here is that I DID and DO love my body. Your value as a person and your beauty is not attached to your weight. The problem I was having is that my body was behaving abnormally. My weight gain was a symptom of a bigger problem, and very few people allowed me the space to express that. I remember vividly a friend telling me that she refused to "buy into my delusion" when I tried to share my feelings about the way my body was behaving

After a long road, I finally learned to trust myself after a conversation with my best friend. I won't ever forget her words:

"You know your body better than anyone else. You're not making this up."

And seriously, why would I invent this? To what goal? No, what I was experiencing was real.

To anyone else going through a similar experience – especially to the people with PCOS or endometriosis – I promise you aren't making this up. Trust yourself.

 

Advocate for yourself

This was a hard lesson. You have to advocate for myself. Because no one else will.

After receiving less than helpful responses from the first few doctors I saw, I decided to I needed to do some work on my own. I trawled through Reddit forums, looking for other people's experiences that might match my own. I bought a blood sugar monitoring kit and kept a blood sugar diary for six weeks.

I took the results to my doctor and demanded several rounds of tests. When I got the first round back, my cortisol levels were double where they should be, my oestrogen was extremely low and my blood sugar was outside the normal range. Finally, there was proof that I wasn't making it up.

But, when I did finally get my diagnosis via ultrasound, my endocrinologist refused to give me any medication. She was convinced I could exercise more. I had two people in my life actively speak against my pursuit of medication, almost annoyed at me for considering this option.

But I no longer cared, this time I refused to take no for an answer. I went to see another doctor and presented my case for medication. The day I got my Metformin script, I cried tears of relief.

Medication has given me my life back, in conjunction with a stress management plan. I was able to move to exercising five days, instead of seven. I eat big, healthy meals and take great pleasure in filling my plate. Sometimes I eat fast food and I no longer feel bad about it. My hair grew back and I can't remember the last time I took a middle-of-the-day nap.

 

You can't judge someone's 'health' on their appearance

PCOS can cause insulin resistance – something I now realise I lived with for a long time. Many people have the idea that people with insulin resistance will be overweight, or that they developed insulin resistance due to an unhealthy diet.

For most of my life, even when I started gaining weight at the beginning, I would have been considered a slim woman. I've had some symptoms of PCOS and insulin resistance since I was a teenager, but I fear my slim appearance prevented anyone from considering PCOS as a diagnosis.

"You can't look at someone and know whether or not they're healthy."

I already knew this, but my journey made that even clearer. Unfortunately, so many people still make judgements about health based purely on appearance. I think we all could be gentler and kinder to each other on this front.

 

No, Ozempic is not a fix-all – you need to manage your stress too

When reading the Reddit forums, I noticed that many people recently diagnosed with PCOS were desperately trying to get their hands on Ozempic.

Ozempic – or semaglutide and its cousin liraglutide – are medications used on and off-label for people who have diabetes, insulin resistance, PCOS and sometimes for those with obesity.

These drugs have three methods of action: increasing insulin production when you eat and reducing the amount of glucose produced by the liver. But the main one, it reduces gastric emptying – essentially making your food stay in your stomach for longer so you're inclined to eat less.

While this could prove effective for weight loss in some people, does it really get to the root cause of PCOS, and treat its associated symptoms?

PCOS causes all sorts of hormone imbalances. It's been linked to causing anxiety and depression and it has a complex relationship with cortisol, the stress hormone. When your body produces cortisol, it triggers glucose release, which then requires more insulin. Too much insulin means the body perceives a threat, which in turn can trigger more cortisol production. It's a nasty cycle that can be really hard to break. And Ozempic is not currently a treatment for high cortisol.

I firmly believe that the on-set of my severe symptoms around age 29 and 30 were due to a highly traumatic incident I experienced. It caused moments of catatonic stress and memory blackouts. I imagine my cortisol would have been very high for a prolonged period, pushing my body and PCOS symptoms into overdrive.

This is not to say that weight loss and Ozempic isn't helpful. Losing weight is one of the key ways to treat PCOS. As such, Ozempic, is a common off-label treatment for many people with PCOS. But, for me and my situation, any medication would need to work in tandem with a wellness and stress management plan.

 

Self care is critical

Due to PCOS and its relationship to stress, I only really started to get better when I started putting myself first. Having some honest conversation about the division of labour in my home, and pushing back on unreasonable working hours.

Hormonal imbalances are just that, an imbalance.

"While medication will always have an important role to play here, if you can work to balance your hormones in other ways, any medication you take will have a better chance to help you."

Sleep patterns, work-related stress, trauma and exercise styles can all impact your hormones. Even the amount of sunlight you get can have an effect.

I switched my exercise from intense cardio to something gentler on my nervous system. I make sure I get at least 10 minutes of sunlight on my skin (with sunscreen) every morning. I consulted with a doctor to choose a range of supplements to support my body. I switched my regular black teas to an ashwagandha herbal tea. I keep my spaces calming and clutter free. And if I've had an intense day, I watch comfort content only to decompress.

I used to try and fit my self care around my other commitments. Now it's the other way around, self care comes first. Even if that means I can't attend all the of fun media events I used to go to.

 

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