PCOS Story: Me, my PCOS, and exercise

Sharon NewsonSharon Newson

Hello – my name is Sharon and I’m 51 years old.  I’m a self-employed Specialist Personal Trainer (working with people living with a variety of health conditions) and a full-time PhD student, researching PCOS in the areas of physical health, emotional wellbeing and exercise.

I have always struggled with my weight – some of my earliest memories are as a 6-7yr old being taken to a hospital dietician and having my weight written up on a blackboard with chalk in front of people in the waiting room!  I quickly learnt that if I lost weight, I was a good girl, and if I put on weight, I was a bad girl.  I also learnt from an early age that eating food made me feel better. At school, I did well academically, but hated PE with passion! I was always last to be picked for any team activities and repeatedly had to take the ‘walk of shame’ back to school on my own when I couldn’t manage to run for the whole cross-country route. I would come home from school after yet another day of being bullied and teased and head straight for a bottle of dilute sugary squash and a slice of my mum’s delicious homemade sponge cake.  Ah, that was better! 

I started with specific symptoms of PCOS about the age of 13.  I had facial hair – well, full beard growth to be honest! I had no periods throughout my time at school.  I started shaving my face (cheeks, chin, top lip, and neck), and the rest of my body too.  I was too embarrassed about this to talk to anyone, even my poor mum, who tried to talk about the subject and I just shut her off.  I was confused about what was happening; distraught about all the unexplained things going on with my body; and unable to understand or explain the emotions that were raging in my mind.  The only thing I knew that helped me to cope was eating.  Emotional eating.  Binge eating.  And always secretively.

I finally plucked up the courage to go and see a GP and discuss my facial hair and lack of periods.  She did the briefest of examinations and said, ‘I think you have PCOS’ and referred me to a hospital gynaecologist.  I had no idea what Polycystic Ovary Syndrome was, and I had no family history of the condition either.  I started seeing the hospital consultant every 6mths, and after confirming the diagnosis with blood tests and an ultrasound scan, I started on Microgynon.  However, this didn’t bring on any periods or help with the facial hair.  I had various other medications and other varieties of hormone pill, but nothing seemed to be working.

I left school at 16 and did 2yrs on a BTEC Business Studies diploma.  I then started working as a payroll assistant for the local council – and all the while my emotional eating was getting worse as I tried to cope with the various stresses of adult life.  At 18 I passed my driving test (only 15 lessons, first-time pass!) and got my first car. This now provided a great place to binge my food in private, with no possible interruptions.  I developed a great rota of local supermarkets to buy my food from – always parking as near to the entrance door as possible to avoid walking far.  I would get through whole family-sized gateaux, packets of Mars ice-creams, quiches, pasties… anything just to ‘numb’ the inner emotional pain that I felt. 

I had been brought up going to a lively church, but never really felt that I ‘fitted in’.  I thought that God wasn’t interested in what was going on inside my head and body – I didn’t feel that I could ever be ‘me’… whoever ‘me’ was.  In 1992 though, I felt called to enrol for a year at a Bible college in South Yorkshire.  That was a tough year – we lived in the community and ate all our canteen-provided meals together.  In order to cope, I bought myself a two-ring electric cooker and smuggled it into my tiny bedroom, under my bed, so that I could cook extra food!! I would buy loaves of bread, butter and Marmite, as well as packets of dry noodles and Swiss rolls, and eat myself into a stupor most evenings.  

After my year there I moved to Northamptonshire and began working in a local church.  I lived with a wonderfully supportive family who ‘adopted’ me as their daughter.  Over the next two years I started to open up to them, and eventually told them about my emotional eating and that I’d also started self-harming by scratching off the skin on my arms and tops of legs with my fingernails.  The church that I attended put me in touch with a lady in Norfolk who specialised in eating disorders.  I went for a 5-day residential retreat but pretended all week that my problems weren’t that bad after all.  I was just too embarrassed at how bad my eating had become and felt I was beyond hope. 

At the age of 25 I was referred to Professor Grossman at St Bartholomew’s in London and underwent a bilateral ovarian biopsy to see if there were any underlying problems with my ovaries.  Thankfully, the ovarian cancer they’d suspected – but not told me about – turned out not to be the case. It was decided that my weight was the main issue and, as for nearly all my life to that point, I was told those immortal words ‘just lose weight and things will get better’. Like it was that easy! The real issues behind why I was overweight (emotional eating) were never discussed, and I was never offered any useful, practical help to try and lose weight. 

In 1998 after two more years at Bible college, I graduated with a BA (Hons) in Biblical Theology from Sheffield university.  I decided to relocate to Rotherham, South Yorkshire and started seeing a gynaecologist and an endocrinologist at a specialist joint clinic for PCOS.  On my first visit, I began telling my PCOS journey again, focusing on my two salient issues (facial hair and no periods).   I had never been asked about the impact on my mental health from living with PCOS and coping daily with the symptoms, but that day I broke down in tears as I talked of the anguish of trying to cope.  

I was referred to a psychologist… only to be told there was a 12-month waiting list!! Thankfully, the gynaecologist I saw managed to get some NHS funding for me to have laser treatment for the facial hair.  I remember dancing around my lounge when the acceptance letter came through – tears of happiness flowed this time!  I found the laser treatment very painful and traumatic, but it was working (I am fortunate to have pale skin and dark hair).  I ended up having 18 treatments funded over two years – for which I will always be very grateful for.  Extensive facial hair is NOT a cosmetic problem and is extremely distressing to any woman living with PCOS, both physically and psychologically.

As well as getting me funding for laser treatment, the gynaecologist told me about Verity UK.  She supported me in setting up a local Verity support group and let the group use one of the hospital rooms to meet in for the first few months to help get us established.  I ran this group for several years – we had up to 20 women meeting face to face each month, although there was a core group of about 8 women who attended regularly.  It was a great support to all of us, with the occasional visiting speaker and some (very crazy) fundraising events for Verity too! 

Sharon Newson August 2010

Sharon Newson August 2010

By the time I was 41 my weight had hit nearly 24st (150kg), and I had a BMI of 52 and wore size 32 clothes.  In the summer of 2010, I hit rock bottom with my emotional eating and thinking I had nothing to lose, I confided in a male friend who I was working with.  He had been open and honest about his journey with Alcoholics Anonymous and I’d seen a difference in him over the past 2yrs – he seemed to glow with life and health now.  He said that there was a group called Overeaters Anonymous for people who had emotional issues with food, and this too was a 12-step programme.  However, at the time I thought I was beyond help – I’d lost hope of ever gaining a ‘normal’ life.  I was on 12 different drugs to deal with my insulin resistance (I was borderline type 2 diabetic), depression, high blood pressure, high cholesterol levels, hormone imbalance, and obesity.

It took another 4 months before I hit another desperate low point, and I ended up one Monday morning on Google searching for Overeaters Anonymous.  Funnily enough (!) there was a local meeting that evening – Mon 25th Oct 2010.  I rang the contact number, spoke to a lovely friendly-sounding woman, and arranged to meet her at the meeting that night.  I then went out and bought two large gateaus and sat and ate them to give me ‘courage’ to get to the meeting.  On the 15-min drive over in the evening, I got through a box of 6 Mars ice-creams.  I sat through that meeting in a ‘sugar haze’ not able to concentrate or take anything in… apart from one woman who said that she’d joined 6 months earlier, thinking there was no hope for her own life, and yet she had been transformed.

Over the next year, I attended regular weekly meetings, got myself a sponsor, and worked through the twelve steps.  For the first time in my life I was able to recognise and talk through all the emotions that I’d tried to bury with food – mainly around PCOS, it’s symptoms, and the daily struggle to cope. We didn’t talk about diets or exercise, and there weren’t even any weigh-ins; we just talked through the roots of our issues. I was also starting to let God into the dark areas of my life where I’d not allowed Him to venture, thinking that He wouldn’t be interested. Instead, I found encouragement, support, and unfailing love, which helped me to continue pressing through the tough stuff.  In that first year, without dieting or any exercise, but simply picking up the phone instead of the food, I lost 5st (70lbs / 32kg).  The weight loss, however, was incidental – my greatest achievement was that I now was using healthy coping mechanisms to deal with my PCOS and life in general.   I felt a real flicker of hope that life was worth living.

In Nov 2011, I had an email from the Chair of Verity, asking if I would be interested in taking part in a TV programme about PCOS.  Thanks to my new-found confidence in life, I said yes without really thinking about it (I reasoned that the filming was taking place in London, I was 200-miles away in South Yorkshire, so they would naturally choose someone much closer).  The following Saturday however, I was filming the programme in London!! I met with the two doctors on set, and over the next five weeks, I was put on an exercise programme and had another funded laser treatment.  I went back in January to film my progress and discovered that despite having Christmas in between sessions, I’d managed to lose seven pounds.  This was TOTALLY unheard of for me!

After filming had ended, I started regularly working with a personal trainer at a local gym, and my love of exercise and nerdy data collection of progress began.  The biggest help for me was in finding someone who believed in me and thought I could achieve things that I often doubted myself.  Also finding someone with whom I had a great rapport with helped, as it was tough at times to keep going.  Focusing on stats other than weight loss was also vital – we looked at ways to measure my fitness, strength, and ability to do things that I’d always wanted to do but had been too heavy or unfit to manage.  I started to make a list of ‘Physical Challenges’ and my gym workouts became a way to take part in these challenges.  The buzz of achieving physical things was just as great as overcoming emotional hurdles.  

After a year of working with my personal trainer, I’d lost another 5st and was feeling great.  I had come off all my medication (under medical guidance) and my periods had not only started but were regular!!  I was no longer insulin resistant, my blood pressure and cholesterol levels were normal, my hormone profile had balanced out, and I no longer needed depression medication.  However, I still had a fair bit of facial and excess body hair but was in a much better place to cope with this on a day to day basis.

In 2013 after being made redundant from my admin job, I chose to use the opportunity to study and become a personal trainer.  On hearing about my personal story, the fitness training company encouraged me to specialise in working with people with a variety of health conditions, so I studied for further qualifications and set up my own business ‘Big Picture Living’ in 2014.  In 2016 my thyroid almost totally stopped working, and within three months I had put on 2st in weight – I was devastated.  Although the thyroid issues are now stabilised with medication, I battled hard to lose the extra weight again, as exercise became at first a chore, and then a hatred.  Exercise had become a necessary evil in order to try to lose weight, and my focus had shifted to valuing myself based purely on the figures shown by the scales.  A loss of focus in self-acceptance and sense of self-worth, a reduction in physical activity, and a slip back into my emotional eating habits led to another 2st creeping back on.

In August 2017 I had a heart attack – which I have no memory of – and spent 3 days in a coma at ICU, and a further 6 days on a cardiac unit.  Thankfully, with the help of 4 paramedics, 5 defibrillator shocks, and some timely medication and fab care from the NHS, I recovered enough to be discharged by my cardiologist only four months later!  His words rang in my ears, “If you hadn’t lost the 10st and drastically changed your lifestyle when you did, we wouldn’t have got you back.”  Sobering words indeed.  Since my heart attack, I have been focused on getting back my sense of self-worth based on how God sees me, and His specific plans and purposes for my life. In these past four months, I have started to slowly build my fitness levels back up but focusing on having fun and enjoying the numerous benefits aside from weight loss.  Even just a relatively small increase in your activity levels when maintained consistently can boost your mental health, improve your insulin sensitivity, reduce blood pressure, and improve cholesterol levels. 

I still have a passion to help people discover that there is always hope, which led me in January 2019 to start a PhD at Huddersfield University, for which Verity has kindly helped with recruitment. My PhD research is looking into the daily impact of living with PCOS on physical health and emotional wellbeing, and how to make exercise fun – and therefore more likely to be consistently maintained – to help reduce the risks of long-term health conditions related to PCOS.  

I am supporting Verity’s #MakeAMove campaign in September 2020 – encouraging fun activities to help keep us all moving and healthy (despite a lockdown!).