Getting Diagnosed with Lipoedema

This is something I’ve been putting off posting for a while now, but after really struggling on my recent trip to Palma, my Lipoedema isn’t something I can ignore anymore. That’s right, turns out I do have Lipoedema! Though I doubt anyone is surprised by that.

If you’ve followed me for a while, you’ll know I’ve always had bigger legs. It’s just how I’m built. My weight has always gone there first, and for as long as I can remember, they’ve been the main source of bullying, stares, comments, you name it. Even as a content creator, posting outfit photos that I love, I still sometimes don’t feel confident sharing certain images and always try to make sure my legs are covered.

Over the years, I’ve had quite a few people (mostly meaning well) message me saying they think I have lipoedema. And honestly? I really can’t get behind messaging people like that. It’s always when I’ve posted a photo I’m really self conscious about and it really upsets me. I never wanted to pursue a diagnosis. I’ve already got enough conditions to deal with and I didn’t want another adding to the list. Another fight. Another thing to manage.

But then, after barely being able to eat with an upset gallbladder and then post-gallbladder removal, and going from a size 28 to 20 because of it, it became a lot more obvious. My legs looked more disproportionate than ever. ‘Tiny’ waist (not my words), smaller shoulders, and then legs and arms that just didn’t match.

What is Lipoedema (and How Is It Different from Lymphoedema)?

Lipoedema is a chronic condition that causes an abnormal build-up of fat cells, usually in the legs and sometimes arms. It mostly affects women and is often triggered or worsened by hormonal changes like puberty, pregnancy, or menopause. It’s painful, affects mobility, and no, you can’t just diet or exercise it away.

It’s not the same as lymphoedema, which is fluid build-up due to damage or issues with your lymphatic system. Lipoedema is fat, stubborn, painful, fibrotic fat that doesn’t respond to normal weight loss or compression.

Signs of Lipoedema

• Disproportionate Body Shape
• Fat that is Painful to Touch
• Easy Bruising
• Swelling That Worsens Throughout the Day
• “Cuffing” at Ankles or Wrists
• Skin Texture

My legs have always bruised really easily, they have different texture, they’re disproportionate, I have cuffing, and they swell throughout the day, especially in heat.

I really thought that being painful was a key sign of lipoedema but everyone is different.

My NHS Lipoedema Referral Experience

I honestly never expected to get a referral, it wasn’t my intention and all and based on the horror stories I’ve read, I didn’t want to even try. So many people get told it’s “just fat” or they’re not taken seriously. But I was lucky. I had a really nice GP appointment (rare, I know) and just casually asked if I could try water tablets for my legs before my next cruise. She took one look and said, “That’s not fluid – that’s lipoedema.”

She literally commented on how tiny my waist was which was such emotional whiplash. After years of medical fatphobia, being told ‘well if you lost weight’ it’d fix everything blah at nearly every appointment I’ve ever had, hearing someone call my waist tiny was really weird.

She referred me there and then.

Lipoedema Services

My referral went through quickly, and I saw someone at the lipoedema services who was genuinely one of the nicest NHS professionals I’ve ever met.

She also mentioned how small my waist was. This is still so weird to me! She diagnosed me with Stage 3 lipoedema and lipoedema in my arms too and spent time talking through it all.

She said one of the biggest issues is people blaming themselves. Punishing themselves with awful diets, grueling gym routines, and hating their bodies for something they can’t control. Her advice? Be kind to yourself. Seriously. It’s not your fault. And that hit me hard.

I’ve just had my follow up appointment 6 months later and the woman I saw was also extremely friendly and supportive. She even apologised because there’s no real help with this condition. Just another thing I have to learn to live with.

I asked about my legs swelling in heat and becoming really painful, but other than elevation and drinking lots of water, there’s nothing you can really do for it.

They did give me a website link that’s meant to be extremely useful and have lots of information on – Lipedema Simplified.

Compression Garments

I was measured for lipoedema leggings and ended up with a pair from LIPOELASTIC UK – they go up to a 3XL+, which is infuriating, considering the condition causes weight gain. You’d think they’d do bigger sizes. But if they don’t fit there is another option of having something made to fit via the NHS.

Luckily, the ones I got do fit, but they’re not exactly comfy with bile acid malabsorption and my daily stomach pain. I’ve had them on 3 times, 2 of them in this last month.

After my second appointment recently, she confirmed that compression doesn’t really do anything so if I don’t find them comfortable then I shouldn’t bother. It’s quite a relief really!

Why I Haven’t Shared Until Now

If I’m being honest, the reason I kept this quiet for so long is because someone used to constantly message me every time I posted a full-body photo. Telling me I “definitely had lipoedema” and it would really knock me every time. It wasn’t helpful, it was invasive, and it made me feel even worse. I eventually asked her to stop and she got angry at me.

I have a lot of emotional feelings towards my legs with them being the first thing I was bullied for, and I still get comments about them at 30 years of age. So I buy longer items of clothing, I don’t post photos where they’re out and I haven’t spoken about it.

But that’s not really me, is it? I love helping people with whatever I can so whether you take away a clever way to bring up the possibility of lipoedema to your GP (by asking for water tablets), or just get the name of what they prescribe so you could buy and try them yourself, it’s time I finally talk about it and help others.

Raising Awareness is NOT Directly Diagnosing People

I also want to say something clearly – don’t message people to say you think they have a condition unless they’ve asked for advice. I ask for a lot of medical advice and gosh so many people have helped me with my gallbladder and BAM problems, but not once have I asked anything about my legs. It might come from a good place, but it can be so damaging. I’ve struggled with confidence for years, even more so after my body changed so much from illness.

I was talking to a friend about this and realised that every single thing I’m self-conscious about now are the things I was bullied for. How sad is that?

If you’re going through something similar, or think you might have lipoedema, please know you’re not alone. My experience with diagnosis was surprisingly straightforward, and I know that’s not the norm, so hopefully this gives some hope that it can be taken seriously.

And like always, I’m happy to chat. Just please, let’s raise awareness with empathy, not unsolicited diagnosis.