I went from 13 stone and wearing a size 10 to an 18-stone size 20 in just 18 months. I had no idea at the time, but I had an incurable condition affecting one in ten women. And, no, exercise can’t fix it

Five years ago, my lower body ballooned from a size 10 to 20 in a year and a half. I was only 23 and many people were shocked at my sudden weight gain. Was it what I ate? How often I exercised? Was I just lazy?

Truthfully, it wasn’t any of those things: I have lipoedema, a genetic condition that causes an abnormal amount of fat to accumulate in the legs, hips and occasionally the upper arms. It affects around one in ten women (it’s very rare in men) and there isn’t a cure.

Until that point, I’d been a slim, confident woman. I’ve played rugby since the age of eight, eventually becoming the Vice Captain of the Widnes Vikings Rugby Team, so I’ve always been toned and loved going to the gym.

But suddenly – and with seemingly no explanation – I went from around 13st to 18.5st in 18 months. I’d never been a bad eater, but I couldn’t understand what had changed so I tried cutting my calories and exercising more, yet my hips and legs kept getting bigger and bigger. I was at a loss.

As the lipoedema progressed, it became really painful just walking around and I couldn’t play rugby the way I used to. There were days I couldn’t train and I would get restless legs at night so I would be wandering around the house at 3am.

Worst of all was the mental aspect: I felt so guilty, as though I’d done something wrong that had ruined my body. I’d suddenly adopted a completely different body shape, so I didn’t know how to dress myself. I would wear baggy clothes most of the time and when I played rugby, I’d put leggings on under my shorts to hide my legs.

The worst moment was a trip with my boyfriend Lenny to Alton Towers. We queued for over an hour to get on the Wicker Man ride, but when we eventually made it, the lap bar wouldn’t lock because of my size. I’d never felt so embarrassed. It’s so silly looking back, but in that moment all my confidence disappeared.

Fed up and desperate for answers, I started looking at social media accounts and forums online and I found a woman called Shannon Natalia who posts about her lipoedema. I saw her figure and realised: that’s me. That’s what I’m experiencing.

After more researching, I found a charity called Lipoedema UK who try to help women get a diagnosis. A lot of doctors don’t know about it and there’s such a stigma with women who gain weight suddenly – a lot of people think it’s hormones or the contraception you’re using.

I printed off the charity’s information pack and took it with me to the doctor’s surgery ready to present my case. It was pure luck, but my usual GP was off that day, so I saw a young doctor who thankfully knew about the condition and was able to diagnose me. I know so many women don’t get that privilege and go months wondering what’s wrong with them, often blaming themselves. When I look at photographs of my grandmother, she also had that exaggerated pear shape – I’ll never know for certain, but I reckon she had lipoedema too and didn’t realise. She just thought it’s something that happens with age.

The most effective way to manage lipoedema is through liposuction. But although the condition can cause pain and has a huge impact on mental health, treatment isn’t available on the NHS because it’s seen as cosmetic – those with botched butt lifts can be treated, but women with this genetic condition have no choice but to pay tens of thousands privately or suffer without any medical support. It’s absurd.

Despite the eye-watering cost, I was determined to get my life back. I started looking up loans online, but my parents could see the impact lipoedema was having on my confidence, so they very generously offered to pay for my treatments. I know how fortunate I am to have that. 

There are surgeries that offer lipoedema treatments in countries like Spain and Turkey, but when you add the cost of travel, accommodation and health insurance, it made more sense to look within the UK. That said, because lipoedema treatment is so expensive (prices start from £6,000 per session depending on the area and often require multiple sessions), there aren’t many options. But I stumbled across Manchester Private Hospital online where they had a specialist, Dr Anuj Purbey, who could help me.

You can choose whether to do full leg, half leg or the whole lot. I decided to get all the affected areas treated across four sessions.

I didn’t experience many side effects, just some minimal bruising, though you do swell for a while, so I worked from home for a few weeks. I work in logistics so I’m lucky I didn’t need to take much time off.

The transformation – not just physically, but mentally – was enormous. My boyfriend says it was like witnessing two different people. I’ll always remember a shopping trip I went on with my mum after the surgery: we picked up loads of clothes that were quite figure-hugging, and I was convinced they wouldn’t suit me. I went to the changing room to try them on and when I walked out my mum just started sobbing, then I was sobbing, and the woman sat next to my mum was sobbing. Later on, my mum said when I came out of the changing room, my face just lit up – I finally had my glow back.

A year after the surgery I was able to get back into rugby; my coach said I was so much fitter, faster and more agile. When my legs were large, I would doubt myself, so I’d hold back a bit during a game. Now I’m far more confident and a better player.

I’ll always have lipoedema and there’s a chance I may have to pay for treatment again whenever I go through significant hormonal changes, such as menopause. Looking back, my condition progressed around the same time I started taking a contraceptive injection which makes sense as lipoedema can flare up with hormonal shifts.

I can’t believe there are so many women who can’t access the life-changing treatment I had. My surgeon and I spoke at an awareness event recently and there were women telling me they were depressed and had considered taking their lives because they couldn’t afford the surgeries. It’s heartbreaking.

Sadly, the financial cost has put me off having children. I’m 28 now and I may change my mind, but having a daughter who inherits my condition is my biggest fear. I was so lucky my parents had worked hard and could pay for my treatments, but my boyfriend and I aren’t in the same financial position. It wouldn’t be fair for us to say: ‘Well, your mum did it, but we can’t fund you so you’re going to have to suffer.’

Every year, Lipoedema UK fight to get treatment on the NHS. We fund so many other treatments, why not this one? Doctors told me if I didn’t treat my lipoedema, I’d be in a wheelchair by the age of 30. How is that fair? It affects so many women, I really hope our options begin to change. I honestly wouldn’t be the happy, confident woman I am today without this crucial treatment.