How to get a Lipedema diagnosis

Navigating the world of Lipedema can seem like a minefield. I remember when I first suspected I had Lipedema, I didn’t have a clue where to start. Thankfully, I was pointed in the direction of the amazing online community and various lovely lippy ladies helped me get to where I am today. 

So, if you have any of the below symptoms, this is the best way to get a diagnosis in your country:

• Pain and discomfort: The accumulation of fat in the affected areas can cause pain, tenderness, and a feeling of heaviness.
• Swelling: Lipedema can cause swelling in the legs, which can worsen throughout the day.
• Skin changes: The skin over the affected areas may be sensitive to the touch and can bruise easily.
• Limited mobility: As the condition progresses, the excess fat can limit mobility and range of motion, making it difficult to perform everyday activities.

Seek Professional Help

First of all, make an appointment with your doctor. The best piece of advice I can give you is to do your Lipedema homework and take lots of information with you. Hopefully you won’t have the same experience as me, but my doctor basically tried to turn me away telling me to just ‘put my feet up whenever possible.’ There is very little awareness around Lipedema still, even in the medical community.

I was warned by other ladies in the community that this was probably going to happen, so I showed my doctor all the information I had gathered and insisted I needed to be referred to a specialist. Don’t take no for an answer!

Ask to be Referred

The best referral you can get is to a Lymphoedema specialist or a vascular specialist. I was referred to a wonderful Lymphoedema nurse and because there are so many overlaps between Lipedema and Lymphoedema, she was an expert on both conditions. 

She took one look at my body and the disproportion between my legs and waist and confirmed that I had stage 2 Lipedema. I felt so happy that there was finally a reason why my body looked and felt so different to everyone else, but also a sense of sadness thinking about the long road ahead. 

Compression Garments

A Lymphoedema specialist is also well versed in providing compression garments, which you will become very familiar with after getting your diagnosis. She measured me up there and then and my garments were with me in less than 2 weeks. 

In the UK, garments provided by a Lymphoedema nurse will cost you the standard prescription charge, which is around £9. You can also get multiple garments on one prescription, once you’ve found the right size, which works out to be really cost effective. 

The diagnosis will then be sent back to your doctor and will be kept on record. Getting an official Lipedema diagnosis isn’t invasive like a lot of other illnesses, however it can be a long process. It took approximately 4 months to be seen by the Lymphoedema nurse, but I’m so glad I waited. 

Going Private

If you are itching to get your diagnosis and can’t wait that long, I suggest going down the private route. I’m unsure of costings for this, but if anyone else has gotten their diagnosis privately I’d love to hear your stories. I can then share them in my weekly newsletter. 

Lots of women in the Lipedema communities online are from America or Europe, it would be great to hear about your diagnoses so I can spread the word for other women worldwide who haven’t been officially diagnosed yet. 

Comment below or send me an email on sophie@lipedemaandme.com, I’d love to speak to other women going through this process – just know you’re not alone.

Disclaimer: My blogs talk about Lipedema, diet, surgery and much more. I’m talking from my point of view to help women, and remind them they are not alone. I am not a medical professional, so the content above is from my own perspective with research I have done into the topic. It’s not meant as medical advice, you should always consult your doctor or a specialist for both your diagnosis, and a treatment plan.