PCOS Story: Diagnosis Detective star Hayley Ellen tells us to never give up fighting for our health!

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*Content warning: This blog features discussion of eating disorders, self harm and suicide. 

Hi I’m Hayley Ellen and if you recognise me it’s probably because you recently saw me being diagnosed with PCOS on BBC2s Diagnosis Detectives. I’m super excited to write this blog for Verity as hopefully it can inspire others in a similar position to get help and seek a diagnosis.

Firstly, I want to thank everyone for their kind comments and the support I received after my Diagnosis Detectives episode. It is heart-warming to see people come together but also incredibly sad to read about others who have struggled with their diagnosis.

I chose to reach out to the Diagnosis Detectives after I saw an advertisement looking for volunteers to appear on the show and as I had no luck with health care professionals in finding a PCOS diagnosis, I took the plunge in the hope that this would really help me and find out what was wrong with me.

When I found out I was going to be on the programme I felt nervous, but hopeful. I wasn’t too fussed about being on tv. They give you a rigorous psychiatric check to make sure you don’t just want to be on the tv for the sake of being on tv and also that you’re mentally capable of dealing with nasty comments people might make online. Meeting the production team was very casual. I only met the film crew and there was only ever two at most. Filming was extremely tiring and invasive but the film crew were always extremely pleasant and organised.

A huge misconception from the show was that my GP didn’t fully look into Polycystic Ovaries – but that was actually one of the very first things they checked for! I had the blood tests done and a vaginal ultrasound only a year before the show was filmed but no follicles or cysts were visible in my ovaries. It has been my personal experience with my endocrinologists that has let me down – they took the bloods that were found to be abnormal and they seemed to ignore the findings. The tests also showed low oestrogen levels and low sex hormone binding globulin. Also not mentioned on the show is that I have a very strong theory shared with my local GP that I have cyclical cushings, but I only met the endocrinologist for the show once and the trouble with cyclical cushings is that the cortisol can look completely normal in tests on one day, but sky high just a few hours later. And so, a year on; I’m still hunting that side of my diagnosis!

I’m not sure I’d do it again if I went back in time… mainly because I was left very disappointed that they didn’t look more into the cushings diagnosis. I only met the endocrinologist once, which isn’t enough to rule cyclical cushings out. However I am so happy that many women could relate to my story and that I’ve hopefully helped a few ladies struggling who are in a similar position by going public with my journey. My experience has taught me to be proactive with my diagnosis and I’d urge you to do the same, take charge of your own health, chase up test results and get the answers you deserve! 

My story is familiar with many PCOS sufferers… I was an athletic, lean and muscular teen until I very quickly piled on weight. My lovely, glossy, curly locks started to feel like a brillo pad and then fell out in clumps on a daily basis. Brushing and washing my hair became the bane of my life. My hairline has completely receded just as you see in aging men. I have small short spikes of hair where the follicles have miniaturised across my whole scalp. It’s called androgenic alopecia, and it’s a demon many of us with PCOS unfortunately know well. It has been extremely liberating for me to wear wigs. When I first made the decision to wear wigs, I was nervous. I was scared of what people might think. Would they laugh at me like they did with my weight? Would the wigs look too unnatural and extremely obvious? I asked my endocrinologist at the time and he told me I wouldn’t qualify for a human hair wig on the NHS because I hadn’t lost enough hair. I wasn’t bald enough. I googled human hair wigs and was shocked by the price! I couldn’t afford hundreds of pounds for a hair piece. And so my first wig was a synthetic cherry red hairpiece that looked like my dyed hair and people were none the wiser. Eventually a few people cottoned on to the wig-wearing when I started wearing rainbow mermaid pieces… but the reception I received was thankfully overwhelmingly positive.

I went from a tiny UK size 6 with body dysmorphia (with anorexia) to being a very overweight size 20 in a very short period of time. I was a gym bunny and loved outdoor pursuits…running, hiking, cycling etc and then suddenly I had no energy. I forced myself to keep going to the gym but nothing shifted the weight. The GP on the show mentioned that too little calories could ironically cause weight gain and that he was worried about my diet. I had been chugging Slimfast and barely touched solid food. There was an overwhelming feeling of guilt if I touched anything with carbs or sugar.

My mum was a star – she MADE me eat. She researched and tried her best to make me nutritious meals. When eating more calories didn’t work, the GP recommended orlistat tablets. For me, this was the worst thing ever! To avoid being too visual I could not leave the house without ruining my pants. It was horrible. I quickly stopped taking those. 

I’ve been on every type of contraception you can think of to try and manage my PCOS symptoms and none of them worked for me. I went on contraception at a very young age to manage my periods – which were constant, painful and heavy. I became dangerously anaemic and the iron tablets made me vomit. As a result I barely left the house and slept all day. My social life hit rock bottom. I was doing everything I could to manage the symptoms but my body was my own worst enemy. 

My mental health became indescribably terrible and here is a trigger warning… I made attempts at taking my own life and there was a lot of self harming. Not even the strongest dose of antidepressants or counselling could curb the urge to harm myself or keep the dark thoughts at bay. But the antidepressants at least kept me fighting. In the meantime I kept getting fatter and fatter and my three and a half year relationship suddenly ended without warning. He told me it was because “I deserve better” which quickly changed to “I don’t love you anymore”. I knew it was because of the weight gain and the mental health. He blocked my number, disappeared off social media and even ignored my emails. He pretended he didn’t know me and left me with many burning questions and a broken heart.

But my story doesn’t end on a sad note. Years later I met someone who loved me for ME, despite the weight gain and my other ailments. He told me if I never lost the weight and only got poorlier that he would never leave me. Now, years later, we are moving into our first home together and he has been an absolute rock with my health problems – understanding that some days I can barely get out of bed and that some days I need help showering, eating and doing the most basic of activities. Jake is one of a kind and I am thankful for him and his positivity every day!

I am still chasing the cushings diagnosis but I have accepted that PCOS also causes a lot of my symptoms. While the spironolactone and metformin have not helped me personally, I am positive that switching back to the combined pill will help increase my female hormones and sex hormone binding globulin – thus alleviating some of my issues. 

I continue to hit the gym three times a week and I have invested in a Myzone belt and Fitbit to keep me on track with calories burned and physical stats. For me, they are definitely worth the money! (Not a paid endorsement, I just super love the products). I urge anyone who thinks they have PCOS (and/or cushings) to never give up fighting for the diagnosis. It is not in your head. You know your body more than anyone else, and if you feel there is something wrong – there probably is! Connect with PCOS charities and communities and talk to like-minded people – it really makes the world of difference to feel understood! Never give up fighting for your health PCOS warriors!

Love Hayley xx

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If you would like to share your personal PCOS journey please email Laura Faulkner our Information Production Manager at laura@verity-pcos.org.uk