health

"My doctor didn't believe in it." The reality of trying to get a diagnosis for PCOS. 

Growing up, I’d always struggled with acne (particularly in those areas commonly linked to hormones like my chin) and had never had the most regular of periods. I thought it was normal.

I tried everything to get rid of my acnetwo rounds of Roaccutane, antibiotics, cutting dairy, prescription-only topical treatments and just about every product available over the counter. I was so content when I finally found a pill that worked for me and cleared my skin, and meant I could skip my period.

Life was good again. I could feel confident and beautiful without makeup, I could wear less makeup, skip my period, and could go a whole week before my hair started to get greasy. It was bliss.

Except for when it wasn’t.

Watch: 5 things you should know about PCOS. Post continues. 

My moods were all over the place, I was an emotional wreck and I was growing increasingly uncomfortable with taking the pill knowing how it made me feel, and not knowing what it was really doing to me. The news was littered with countless stories of girls having strokes from the pill, blood clots… young women were dying.

So I stopped taking the pill.

My skin freaked out, my period didn’t come back, I gained weight, I was getting a long, black hair on my chin and I had started to grow a moustache.

I’d read that it was normal for all of this to happen, so it didn’t bother me. I just waited it out until my body would do its thing and get back to business. After a few months of not tracking my period (don’t be like me, please do this!) I started noticing that I’d only gotten my period twice that year. Combined with my other symptoms, something just wasn’t right.

So I did what any normal person would do and I went to my family GP, who’d I’d been seeing for years to ask him what the hell was going on – because I trusted him. At 23, he told me I was probably just going through puberty (yes, he really said this) and to go back on the pill, because “I really needed to do something about my skin”. I left that appointment feeling totally ignored, invisible and like my symptoms meant nothing.

I turned to Dr Google. After a whopping five minutes spent researching my symptoms it was obvious to me that I had polycystic ovary syndrome (PCOS). Angry and I confused, I mentally cursed my doctor and spent my days consumed by building my speech for when I would go back, demanding to be taken seriously.

I went back to the same doctor, read my laundry list of symptoms – yet avoiding dropping the PCOS bomb – to see if I could get the diagnosis out of him. Nothing. I left with another prescription for the pill, scrunched up in my hand as I sat crying in my car.

How dare he ignore me? What would I have to do to be taken seriously? I knew I needed to see a female doctor.

So back I went, armed with my rehearsed speech, a log of my periods (or lack thereof), a list of symptoms and a fire in my belly. I didn’t even get through my speech before I had a referral for an invasive vaginal scan and blood tests in my hands.

Following the blood tests showing a mystery of out of whack hormones and an ultrasound showing my pollard-esque ovaries covered in over 30 ovarian cysts, I had my diagnosis. Ecstatic, I waited for my female doctor to prescribe me a motley crew of drugs that would cure me. Instead, I left with yet another prescription to the pill and felt totally lost. Again.

What the f*ck was I meant to do? I spent hours in bed, curtains drawn, crying as I read the desperate posts from women in PCOS Facebook groups searching for answers, trying to have children and dealing with miscarriages. They were all just as lost as me, and no one was listening to them either.

After a conversation mottled by tears with my parents where I cursed the nasty male doctor for ignoring me and making my illness invisible -there’s nothing you could have done differently if you found out earlier, I was told – I went to see a specialist. Hopeful they would finally know what to do, I waited the four months for my appointment.

Again, I left with another prescription to the pill and the promise that I would grow out of it. “Trust me,” the gynaecologist said, “girls like you don’t have PCOS for long”.

But here I am, over a year later, with a face still pocked by acne, hair growing on my neck and chest, and still no idea what the f*ck I’m meant to do with this disease.

Defeated, I booked in with a naturopath. It’s been 5 months, and I have my period back. Well, it’s under 200+ day cycles now, anyway. I still have acne and the hair, but I feel a lot more confident in what I’m doing for my illness. Like someone finally knows what I need to do.

So what did it take to get my period back? Shotting down two shots of dark, putrid herbal tonic a day, quitting a job that kept me in a stressful state 24/7, and trying my best to eat a lot healthier. I still don’t know if I’m cured, or what day my period will arrive, or if I’ll able to have kids; but at least I have hope and a (female) medical professional in my corner.

But what do you do if you don’t afford to splash out $400 a month for a “miracle” herbal tonic and just quitting your job? There’s still no answer. Australia, you need to do better for the 17-21 per cent of your women who suffer with this incurable, invisible disease. Times up.

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Top Comments

Missouri Fertility 5 years ago

I really hope this young woman gets herself to a reproductive endocrinologist - we're trained to manage hormonal and endocrine disorders that affect the reproductive system...and treatment isn't swilling tonics - there is a standard of care and I hope she finds an REI that can help her!


Mum of 2 6 years ago

I just wanted to give some hope to any other PCOS'ers out there that might be worried about being able to have kids in the future. I have PCOS (have had it undiagnosed since puberty started, and had it properly diagnosed when I started wanting to have kids) and I have two great kids. My cycles were around the 100 days+ mark at the time that it was diagnosed (I had been on the pill for about ten years before that). A good obstetrician/ gynaecologist was able to help me on the path towards parenthood, and I was lucky in that very little intervention was necessary.