I was diagnosed with PCOS at 14 because of infrequent and really awful periods. It has since been confirmed with a blood test and ultrasounds of my ovaries which showed cysts. Clinically I have “classic PCOS” symptomology.
At first it was managed with Dianette, a combined contraceptive pill, which was great and kept most of the issues at bay, but after 4 years I moved house and was forced to change doctor and the new one took me off the Dianette because of some length of treatment licencing issue.
We tried numerous other pills including different brands of the combined pill and two kinds of mini pill. I had horrific reactions to all of them. I’d wildly mood-swing between hyper and suicidal, my acne got out of control, when I got my period the nausea and vomiting would lay me out flat for 4 days at a time and, worst of all, I started experiencing migraines with the whole works – dizziness, vomiting, halo and headaches that made me want to die. I began growing excessive facial hair. I’d always had a lot of dark body hair. The headaches were still happening. I ended up experiencing some of the rarer and really bizarre symptoms too, including hyperprolactinaemia. Lactating when you’ve never been pregnant is a terrifying experience. I’d wake up in the morning with milk blooms on my nightdress.
One (male) doctor told me that if I couldn’t be happy with a pill I should just get sterilised. I was 23 years old.
I persisted and persisted until eventually a doctor pulled me off contraceptives altogether because of the risks associated with the headaches and I was just left hanging. Lose weight, they said. You’ll be fine. Except they don’t tell you how to lose weight when dieting the “normal” way clearly doesn’t work.
I finally moved to Scotland and thought I would try again with a new doctor, only to come up against other problems. I was refused access to endocrinologists – apparently it’s standard here to be referred to a gynaecologist instead, even though it’s an endocrine issue. I walked out and refused to go back after the third time he told me I should get pregnant if I wanted to fix myself. For the record, there is no cure. Getting pregnant is incredibly difficult and will not fix anything. The worst part of that whole experience for me was that he knew I was single and not sexually active and just coming out of a traumatic experience at the time. And he thought it was okay to tell me to try my hardest to have a baby. Honestly…it beggared belief.
I wrote letters. I begged for referrals. I really tried and for a long time I semi-managed my symptoms with a trifecta of drugs that don’t do anything about the weight gain or body hair but keep me from being depressive and mood-swinging and I’ve been coasting for nearly 10 years. I’m ashamed to admit that I gave up. I stopped fighting.
Unfortunately one of the drugs has the side effect of kidney stones, for which I’ve been hospitalised more than 6 times in the last 3 years. I also didn’t realise I was suffering from sleep apnoea until I scared the hell out of my boyfriend a few nights in a row when I stopped breathing. He’ll often wake me up to roll over because I’m struggling to breathe, sometimes several times a night. My day to day life consists of fatigue, exhaustion and aching joints. My periods are ugly affairs with stomach cramps that feel about the same as kidney stones (and I’ve had enough of those to be able to reliably compare). I’ll get nauseous for no reason. I react to all sorts of foods, including some allergic reactions that have landed me in hospital with an acid burned gullet. I have very disturbed sleep. Sometimes my body temperature goes haywire. I don’t get the really bad headaches any more but when I’m hormonal I’ll have a mild headache that lasts for 3 to 5 days and comes with an associated hypersensitivity to smell. I’ll also cry for the most ridiculous of reasons when I’m hormonal. I get easily upset. I have problems with my lungs, so when I catch a cold, I’ll cough until I vomit and I’ve burst all the blood vessels in my face. Sometimes I cough like that just from laughing. It’s not much fun. On top of that, I have all the self loathing that comes with this illness. Feeling like a whale because I have the classic PCOS distribution of excessive body fat. Feeling less than feminine because of the body and facial hair. It’s a lot to deal with.
The lightning bolt for me, the moment that changed everything, was when a post from myPCOSteam.com asking “What type of PCOS are you?” popped into my FB feed and I followed it out of curiosity. It felt like a wrecking ball.
I had no idea that there were different types of PCOS. I didn’t know that I could manage it better with a specific diet. I didn’t know that it could be responsible for all the inflammatory issues with my lungs that have landed me in hospital more times than I care to count. I didn’t know I had a chronic illness and it still feels weird to say it. I have a chronic illness. I’m never going to get better. Up until recently it had always felt like a once a cycle thing that didn’t spread out into other parts of my life so I could kid myself that it wasn’t chronic. It’s a pretty devastating thing to come to terms with.
I feel angry that I’ve been denied decent medical advice again and again for two decades, and I’m annoyed with myself for not thinking to search the internet of my own accord earlier. My heart breaks for all the millions of women out there that are as clueless as I was and are still getting bad medical advice and don’t know that they could help themselves if only they would make that first search.
So this is where you find me now – I’m 6 months into a strict diet regimen, trying to manage with good food and supplements. I’ve come off all my drugs and it’s a struggle. I’m still adapting, still learning, still looking for new research and new things to try. I’m incredibly lucky that I have the love and support of a very good man who is almost as interested in the research as I am and doesn’t mind all the dietary restrictions we have. I’ve enrolled myself in counselling to come to terms with this new lifestyle and understanding of who I am and what I have.
I am now an ambassador for myPCOSteam.com and my role there is to provide comfort and guidance to other #TeamTeal warriors in the forums. I don’t think that my role should stop there. I want to be a voice, a loud voice, that advocates for better knowledge in every strata of life about this illness and the devastating impact it has on women’s lives. I try to be as open and honest about my journey as I can because if it helps even one woman, it’s totally worth it.
This is who I am and what I stand for. I hope you understand a little better now why this month is so important and why it needs to happen.