‘My struggle to get a diagnosis and treatment’

My name is Anne. I am 47 years old and was diagnosed with Lipoedema in August 2017, around 30 years after I first noticed signs that my body wasn’t quite the same as the other girls’ the same age.

Within those 30 years, I have visited my GP surgery on many, many occasions and seen lots of different GPs. When I mentioned that my legs were painful to touch and very swollen, I was always given the same standard answer. ‘You need to lose weight and exercise more.’ One female GP, to whom I explained that my legs were sore to touch and really disproportionate to my body, said, ‘I don’t think the problem is your legs; I think it’s that you are grossly overweight’ – and she hadn’t even weighed me. I was left feeling that there was no point in trying; it must just be how my legs are meant to be.

Over time, I had learnt how to cover my body to hide my horrendous-looking legs. I had once been asked by my manager in a very busy office, ‘What the hell is wrong with your legs?’ – that was the beginning of me never wearing skirts ever again. I was 22 at this point, newly married and totally ashamed of how I looked, so I only ever wore wide-leg long trousers from that day on.

Until I was diagnosed, my life was just a conveyor belt of hiding my legs and making excuses to everyone. I was constantly being told ‘just eat less and exercise more’, and until recent years that was what had done the most damage. No one understood, and I could tell that they never believed me when I told them I never ate a lot and I did exercise whenever I could. Year after year I’ve had to watch while my friends confidently wore beautiful dresses to occasions while I covered up and looked frumpy. Lipoedema stole my self-confidence and my femininity, and now it is rapidly stealing my mobility and my independence.

In the beginning of 2017, my mum and a friend both showed me a story in a magazine about a lady with Lipoedema and said they thought this was what I had. I researched the condition and believed that I did have it, and started to try and find out how to get diagnosed. I found out that Mr Munnoch was the only surgeon in Scotland who specialised in Lipoedema, so in March 2017 I went armed with all the information to my GP.

I always asked to see a female GP, and was given an appointment with a new female GP. She had never heard of Lipoedema and didn’t know if she could refer me, but she agreed to write to Mr Munnoch on my behalf. I then waited a couple of weeks and called Mr Munnoch’s secretary to ask about my referral, and was told the waiting time to get to see him was nine months and that I was on the list.

I did a little more research and was really keen to get a diagnosis. I had private healthcare and asked if I could be seen privately by Anne Dancy in Birmingham. I got an appointment in August, where she diagnosed me with Stage 3 Lipoedema in both my legs and arms, and explained that she could operate and remove all the Lipoedema from my legs and arms and that it wouldn’t return. She also told me that I should ask my doctor to test my vitamin D, folic acid and calcium levels, as Lipoedema patients are likely to be deficient in these. I did, and I was deficient and probably had been all my adult life.

The cost for the surgery would have been £45,000. My private healthcare wouldn’t cover the cost as it was removal of ‘fat’. At first, I was excited and started to plan how I could pay for the surgery as I was so desperate to be rid of this awful condition.

However, my excitement soon turned to anger the more I thought about it. I had a genuine medical condition and was being exploited by a private clinic because they know that people with this condition are desperate. I also have a daughter who could inherit this, so I started to reach out to my local MPs and MSPs, who were very helpful, and then my mum introduced me to Monica and her team (who have been amazing), which has led me here today.

I decided to wait for my appointment with Mr Munnoch. While I was waiting for my appointment, I continued to research and found out through various different FB sites that I should ask to be referred to my Lymphoedema Clinic, where I could be measured for compression garments. I asked my GP to refer me and got my compression and lots of good advice from my lymphoedema nurse, but again my GP had no clue she could or should refer me there. I then got my appointment with Mr Munnoch (in January 2018), and he agreed I was an ideal candidate for surgery. He wrote to my GP and copied in NHS Lanarkshire, who deal with all the funding for South Lanarkshire.

I went to see my GP about the funding request, and she told me that she had been told off for referring me without speaking with NHS Lanarkshire first. She seemed annoyed – I felt awkward, as it wasn’t my fault that she didn’t know she couldn’t refer me. She told me she would submit the funding request but couldn’t discuss any of the information with me and I wasn’t allowed to see the form. What followed was a series of mistakes that included wrong email addresses, a rejection for funding (I was told I should try ‘conventional methods’ instead, but when I asked what the conventional methods were, my GP said she didn’t know), followed by an appeal. Almost four months later, I got funding, but to date [January 2019], I still haven’t received a date for my operation.

I could go on and on about the effects that this condition has had on my life both mentally and physically, but one of the big ones for me is being denied fertility treatment for three years. I was told I was clinically obese and needed my BMI to be lower in order to get the initial investigations to find out why I couldn’t get pregnant. It took me three years of starving myself to get just slightly under the guideline BMI. I now have a beautiful daughter but have suffered four miscarriages, and I often wonder if there is a link between this and Lipoedema. On a daily basis I have to make decisions as to what to do and when – for example, if I work a full day, I can’t do anything in the evening as my legs are so swollen and painful, and if I am invited on a night out, I have to know where we are going in advance as I can’t walk far and need a seat. I have to turn down lots of social events as I’m simply not able to go if there is no seating.

GPs need to be trained to spot the signs and symptoms of Lipoedema in order to get young women the help they need in the early days, as the early days is when the most mental damage is done. If I was asthmatic, I would have access to a dedicated clinic; if I was diabetic, I would have access to a dedicated clinic; if I had arthritis, I would have access to a dedicated clinic. Lipoedema sufferers deserve a dedicated clinic with trained professionals caring for them and advising them. Lipoedema needs to stop being looked upon as a cosmetic nuisance. It has robbed and is robbing thousands of women of their mobility, and for this reason we absolutely need more surgeons in Scotland to reverse the years of neglect of patients with Lipoedema.

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