Katie’s Story

Zoe’s Story

Lucinda’s Story

Lipoedema has run in my family for generations, but has only relatively recently been diagnosed, in myself and my mother and my grandmother – all at once.

To start from the beginning, I was a very skinny child and never struggled with my weight. I do have an aunt without Lipoedema who is very slim, and it was generally assumed in the family that I was taking after her.

I remember one day that my grandmother commented I “was getting the Roberts bum after all” when I was 13 or 14. I asked my mother what that meant, who explained grandma was talking about this big bum which has been in the family from the Roberts’ side for generations, and our family has long called it the ‘Roberts’ bum for that reason.

So that’s when I first started to get insecure and pay attention to that region, which really had started to expand rapidly. Within a year, there was a very definite clothing size difference between my upper and lower body, and in two years, it was two clothing sizes.

One thing that’s really relevant here is the fact that I had been at a full-time boarding school since I was 11. So, seven days I week I had the same standardised meal portions, three times a day, and five days of the week we had compulsory exercise for an hour. And that diet and exercise regime was something that categorically had not changed between my being 11 with
skinny everything and 15 with fat legs. And my upper body was skinny the whole time.

That’s something that I always want to emphasise because the majority of Lipoedema patients are not as lucky as me in the sense of being able to know, emphatically, that their diet didn’t change. And in a society when you’ve been conditioned to think that fatness is always your own fault, and is always a consequence of overeating, it’s very easy for patients to accuse
themselves of overeating and decide that they have just been eating too much even when the reality may be that they’ve been starving themselves. And it can be easy for doctors to make that snap decision as well on seeing a larger patient.

Unfortunately, even though I knew that my diet hadn’t changed, I was a young teenager with no biological background or understanding at the time, so I concluded that I must be overeating to have gained this weight.

This kind of conspiracy theory occurred to me that all the other girls at school, who appeared to be eating the same as me and yet being skinny, must be somehow hiding their food and eating less and doing extra exercise privately. So, I cut down my intake as much as I was able, and added a lot of exercise….

And my legs got fatter. I ended up seeing my ribs as I lost weight from my top half, but my legs still seemed to be getting bigger. So the next theory to occur to me was that maybe I was insane, I was literally hallucinating and had body dysmorphic disorder, and I just couldn’t see my legs which were really skinny in reality. Naturally, that had me very worried about my
mental health, particularly because being a teenage girl I did ask my friends questions like, “do you see this? Do you see how fat my legs are compared to the rest of me?” Which I meant as a serious question rather than as fishing for compliments, but them being also teenage girls are tied into this social contract of having to say “oh my gosh nooo you’re so skinny!” and I really couldn’t tell what was the truth, and ultimately felt like I couldn’t trust my perceptions.

Eventually I started to measure myself around the thighs and waist, and I went for three weeks of eating as near-to-nothing as possible. During that time, I both lost weight on my waist and gained it on my thighs at the same time. By the end of it, each one of my thighs individually had a greater circumference than my waist did.

As a consequence, in my case I feel totally confident in saying that I don’t believe any dietary intervention can stop lipoedema at the time that it is developing, or indeed burn off lipoedema fat afterwards. Which feels so important for me to stress, because of course when they get diagnosed, and when I got diagnosed as well, patients keep asking for the diet they ‘should’
follow, because that’s what they’ve been trying to work out for years, ever since as soon as the disease onset. But just because it would be nice to have a dietary answer, doesn’t mean that there actually is one.

Unfortunately at that age, I had never heard of lipoedema – or indeed, any medical/metabolic conditions that could cause weight gain unrelated to diet. It didn’t even occur to me to ask for medical help at the time, because I had no idea that weight gain could be a medical issue. The takeaway that I got from my experiment was that I did indeed have fat legs, those legs were
getting fatter, and that even during the three weeks I had been living just off salad, I had obviously still been eating too much, because my legs had still gotten bigger. So from there I did end up spiralling into some eating disordered behaviours, and just flipped between extremes of weight loss and comfort eating, etc, for a long time.

I maintained a normal BMI but my legs were continuing to grow independently of the rest of me, which was devastating for my self-confidence. My attempts to make my legs slimmer just made me more obsessed with them, which meant that their size became more upsetting to me… which meant I obsessed more over them, et cetera. Before long, thinking about food and
my appearance consumed my mental energy near-constantly. It was horrible, I was depressed. Then one day when I was eighteen, my mother took me aside and said that she had just been diagnosed with lipoedema while being investigated for suspected lymphoedema. She gave me a brief outline of what it was, and for her the diagnosis was a huge relief. She had also struggled with her eating and body image since puberty, and finding out about lipoedema really explained to her what had been the fundamental problem. Receiving a diagnosis allowed her to feel that she was being taken seriously by medical professionals, that her size was not her fault, and helped her to just focus on eating healthily instead of obsessing about her appearance. She even founded a charity, Lipoedema UK, to help other women receive diagnoses and treatments for their condition.

I wish I had responded similarly maturely, but I was 18 and – rightly or wrongly – by this time, I wanted to be skinny again more than anything else.

So, the diagnosis felt like it confirmed that:

1) I would be fat forever and there was nothing I could do about it
2) When I typed ‘lipoedema’ into google I saw ‘before and after’ images of women starting at stage 1 and progressing to stage 3 over time, which was incredibly depressing because I still looked like the very mildest stage 1 images, and was already utterly miserable with my appearance
3) I didn’t have any pain at the time of diagnosis, and now I also realised that I was going to end up with painful legs like my mother’s; when I was a kid I could never sit on her lap because of her pain, so I became afraid of that
4) I might end up in a wheelchair, because of course having knee misalignment due to fat pads is a big risk factor for osteoarthritis, and obesity is a contraindication for treatments being successful. And just the bulk of the legs themselves can hugely reduce mobility
5) I now had to wear compression stockings forever which are uncomfortable, and the ones I had been prescribed came only in ugly colours
6) Finally, I couldn’t even have liposuction. Throughout my teenage years of attempted weight loss, liposuction had always represented for me a light at the end of the tunnel, and I had planned to have it as soon as remotely financially possible. Back then there was no published research (at least that I was aware of or able to find) on liposuction for lipoedema. The only thing I learned from looking up lipoedema and liposuction, was that patients who had normal cosmetic liposuction, had ended up with damaged lymphatic systems and full-on excessive lymphoedema.

As a consequence, while the diagnosis was great for my mother, it actually made me even more depressed. I think that being diagnosed was important, but I want to be honest about the unpleasantness of the experience. I gave up all of my complicated eating behaviours in exchange for just eating, all the time. Because of this fatalistic idea that I was inevitably going to be huge and disabled anyway. I really was not mentally well and I was fantasising a lot about my legs getting cut off in some freak accident, so not good.

Next thing you know I’m 21 and overweight on top of the lipoedema weight for the first time in my life, when I found that a Professor Schmeller online had published papers on giving tumescent liposuction to lipoedema patients. His paper included an eight-year follow up in which the fat doesn’t appear to return. My mother and I both signed up immediately! We were
both warned not to have really high expectations, which I think was sensible, we paid lots of money and we had the surgeries, and it was absolutely worth it. For both of us, no question. The surgeries changed everything in our lives, even things that didn’t feel like were being affected by lipoedema in the first place.

The biggest difference for me personally was that my relationship with food was healed literally overnight, and I still don’t understand how that happened. I’ve heard of people who’ve had gastric band surgery finding that their appetite problems are gone after surgery, but I’d never heard of it after liposuction, I definitely didn’t expect it, I still can’t explain it, but it’s what
happened to me. It’s not necessarily common for lipoedema patients but just as I’m giving a personal perspective, it was a huge thing. The day after my surgery, before seeing any results because I was still all bandaged up, I just didn’t want to overeat or under eat any more. I lost a lot of additional, non-lipoedema weight over the first year almost without trying to.
Which is to say that even though my legs had only ever been at a stage 1, and I didn’t think I had any trouble walking, it was only after the surgery that I realised how much easier and more comfortable it became to walk, so I walked and ran more. Looking good completely erased my self consciousness about going to the gym or swimming, and so it became easier and just fun to do those things and incorporate them into a routine. I wasn’t miserable and so I didn’t comfort eat.

I’ve lived a healthy lifestyle ever since, and even though I have gained some weight back at some times, the pandemic being one of them, it has gone on evenly all over my body instead of just the legs and it doesn’t panic me. I can tell that it’s a natural weight gain and, actually, it is even pleasant to see such a logical cause-and-effect relationship between my exercise and
eating changing, and my body changing. So mentally for me it’s been the psychological effects that are the most startling.

I appreciate how lucky I am that the mental health problems were the worst problems lipoedema gave me, because I never reached the point of physical disability and pain. Some people do propose that only severely afflicted patients should get treated, but I can’t emphasise how important I think it is for young women to be able to have surgery too, as not only are they also suffering, but surgery is such an effective preventative for all of the problems that we otherwise later see in women.

Whenever I see women at conferences who have suffered for decades with this condition, and ended up requiring additional treatments like analgesia, counselling, gastric band surgery, antidepressants or joint replacements that are available on the NHS but don’t actually treat the underlying cause, when that’s known to be lipoedema, it’s just an incredible relief that for me all of that was prevented. The fact that it’s family money that made the difference, while it’s lucky for me, it simply isn’t fair. From a financial perspective, I truly believe that treating patients early really will make a difference to their life, including their overall lifetime burden on the NHS.

Jenny’s Story

Lipoedema UK – Telegraph Article

Lipoedema UK and patient Janet Scott were recently featured in the Telegraph online having been contacted by a journalist after former Love Island star Shaughna Phillips openened up about her diagnosis. The Telegraph contacted Sharie Fetzer Chair of Lipoedema UK for information on the Lipoedema to help with their report on the painful and often misdiagnosed condition. The article which was published online is below.

Lipoedema: the little known condition that causes fat legs

 

As a former Love Island star Shaughna Phillips opens up about her diagnosis, we report on the painful and often misdiagnosed condition. By Alice Hall

23 October 2020 • 5:44pm Source – The Telegraph online

Growing up, 60-year-old Janet Scott had dreams of being a dancer. She was a regular at the local theatre, where she would longingly watch the performers dancing with their “lovely long legs”. But when she turned 16, Scott started to realise that her legs weren’t like the dancers – or in fact, like any of her friends. Unbeknown to Scott, she was in the early stages of Lipoedema, a condition which causes an abnormal build-up of fat in the legs and sometimes the arms. Sufferers often have a small waist with large hips and thighs, making clothes shopping difficult, and experience heaviness or discomfort in their legs. It’s diagnosed in four stages; one being mild and four being the most severe.

“I knew there was something wrong with my legs; they were really big, and they weren’t a normal shape. But my aunties and cousins all had similar legs, so I just assumed that was the shape I had inherited,” she says. 

 

It wasn’t until her forties when Scott received the first inklings of a diagnosis. She was on holiday with a friend in Malta, who worked as a nurse treating Lymphoedema patients in a breast cancer unit. Lymphoedema is a long-term condition which causes swelling in the body’s tissue; it develops when the lymphatic system doesn’t work properly, and it can be caused by cancer treatment. 

She pointed out to Scott that she might have Lipoedema, which was later confirmed after a visit to her GP. Scott was diagnosed with stage-three primary Lipoedema, and also Lymphoedema in her legs. She says she felt “utter relief”; after years of blaming herself, she finally had a name for her condition. 

 

Research into Lipoedema is still in its early stages, and no one knows exactly how many women have it in the UK. Sharie Fetzer, Chair of Lipoedema UK, thinks there’s a “huge number of women” living with the condition, many of whom may have gone undiagnosed. “It’s a bit of a blind spot in the medical community; many women become skilled at hiding the areas they don’t want people to see,” she says. 

In recent years, there have been efforts to move discussions about Lipoedema into the public eye. This week, the former Love Island star Shaughna Phillips revealed that she had undergone liposuction surgery to treat her stage-one Lipoedema. During the interview,  Phillips said that she had to endure years of abuse from trolls over the size of her legs. 

“Before I even went into Love Island you can block words that you don’t want to see and the first word I blocked was ‘legs’,” she told BBC Newsbeat. “I would always feel like my thighs and my calves there wasn’t much difference in size. I never really had a defined ankle. For years I’ve had constant numbness in my legs.”

One of the defining symptoms of Lipoedema is legs that are disproportionately bigger than the rest of your body. Fetzer explains that someone with the condition could be a size ten or 12 on top, but a size 16 – or more – in trousers. The constant numbness Phillips describes is also a symptom of the condition. In severe stages, the fat can feel painful to the touch, and the legs tend to bruise easily. Janet Scott has suffered with Lipoedema since she was 16.

Janet’s legs before her operation :

 

Unlike obesity, Lipoedema fat can’t be lost through diet and exercise. “In people with obesity, the weight usually collects around the abdomen; but in the early stages of Lipoedema, people often have small waists,” says Fetzer. 

Sadly, the two conditions are often linked. Scott explains that she resorted to comfort eating to combat her growing insecurity about her body. As her legs grew “bigger and bigger”, she also had to give up her horse-riding hobby because it became too painful, and the boots didn’t fit her. “I was very depressed about how I looked. It got to the point where I thought: ‘sod it. I’ve got big legs so I’m going to eat to balance out the bottom half of my body.’ I relied on food to give me a high” she explains.

 

It’s still not certain what causes Lipoedema, although it’s believed to be genetic. It’s also far more common in women than men, leading many experts to speculate that it’s linked to an imbalance in female hormones.

Dr Puneet Gupta, a surgeon who regularly treats patients for Lipoedema, explains that, while a woman can develop the condition at any point in her life, there are four main trigger points: puberty, pregnancy, menopause and starting the contraceptive pill. “I see lots of girls who have clear worsening of the condition around these landmarks in their life,” he adds. Lipoedema tends to be progressive and worsen with age.

Aside from causing physical discomfort, Lipoedema can have a debilitating impact on the sufferer’s mental health. As Fetzer sees it, there are two aspects to the shame of Lipoedema. The first is finding out that you don’t look like everybody else; often, this paves the way for bullying. 

“The sad thing is that as the condition progresses, and people get more hurtful remarks, they begin to disappear. You rarely see people with advanced Lipoedema out, because they can’t cope with the negative comments.”

Being dismissed after seeking help from a medical professional can also have a negative impact on sufferers, adds Fetzer. She explains that all too often, GPs will advise women to eat more healthily, or exercise more, rather than diagnosing the root of the problem: “Not being believed plays a major part in making women feel devalued. One of our main aims is to make sure every medical professional is aware of the condition, and able to accurately diagnose it.”

While nothing can truly cure Lipoedema, there are treatments out there to manage the condition; compression stockings being one. These work by supporting the limbs and reliving some of the discomfort, such as chafing, says Fetzer. She adds that they can prevent other conditions such as Edema (swelling in the body caused by infection or inflammation) and Lymphoedema, from developing. However, Dr Gupta says that the pressure created by the stockings can make the pain worse for some patients who already battle with aching limbs.

 

One other treatment is non-cosmetic liposuction, which both Phillips and Scott chose. A survey undertaken by Lipoedema UK in 2019 found that out of 236 women in the UK, 33% (78) had undergone or were booked in to have surgery to treat Lipoedema. It’s not currently available on the NHS. 

However, both Fetzer and Dr Gupta explain that this isn’t a quick fix; the procedure should only be completed by a surgeon who is experienced at treating Lipoedema fat. Afterwards, it requires long-term lifestyle management. When done by an inexperienced surgeon, patients risk permanent damage to the lymphatic system. 

Regular liposuction treatments that use lasers or ultrasound to break up fat cells aren’t as effective in treating Lipoedema, says Dr Gupta. Instead, he says that patients should seek out microcannula liposuction. This technique uses small instruments of around 2mm in thickness to try and “minimise trauma to the tissue” and protect the lymphatics. While recovery times vary, they tend to be around two weeks. 

“When done properly, those areas tend not to grow out of proportion again; it provides some degree of immunity,” he says. “For those who have stage two or three Lipoedema, it can help their mobility and improve their quality of life.”

 

Scott knows this relief all too well. She was lucky enough to be in a financial position to pay for surgery, and in 2014 she underwent two liposuction operations to treat her Lipoedema. During the first, they removed ten litres of fat from her legs. Through a combination of careful diet and exercise, Scott says that her life has dramatically improved since the surgery. She’s joined a netball club, is able to do yoga and swims three times a week.“I couldn’t have done any of that before surgery; it feels like I’ve finally got my life back,” she says. “We need to continue opening up the conversation around Lipoedema, so more women don’t have to suffer in silence.”

For more info, visit the Lipoedema UK website

Key terms

Lipoedema – an abnormal build-up of fat in the legs, and sometimes the arms. The US spelling is Lipedema

  • Lymphoedema – swelling that generally occurs in the arms and legs. It’s often caused by damage to the lymph nodes. The US spelling is Lymphedema.
  • Edema – the medical term for when parts of the body swell from infection or inflammation

 

Lipoedema UK’s Glynis