I just received my lipedema diagnosis and this is how it went

I asked my GP to refer me to Dr Kristiana Gordon back in August and received my referral letter in September. You can choose to see her privately if you wish but there is absolutely no need to pay as she is also based at the lymphedema and dermatology department at St Georges hospital on the NHS.

She was absolutely lovely and easy to speak to. She asked me about my family history, when I first started noticing symptoms, what my symptoms were, if I had any other medical conditions and what medication I was taking. She then asked if I was comfortable being examined in my underwear which I did while standing up. She pointed out the physical signs she could see as she went.

She told me I am most likely stage 1 in my arms and stage 2 in my legs. She isn't a fan of the stage system but chose to include it in my diagnosis letter as I can apparently receive discounted surgery in Germany if I chose to do so. She didn't try to push me to get surgery and doesn't think I need it but said its an option if I wanted to target certain spots that I am self conscious about. She said surgeons often push lipdema patients into having more removed than we need and that its actually a lot cheaper when we just focus of targeting certain areas.

She said that I had been managing my lipedema really well and that I shouldn't lose any more weight otherwise I will start to look gaunt in the face. For the record, I am a size UK 8-10 in tops and a size UK 14 in bottoms, I weigh 80kg with a BMI of 29 and I have lost 20kg and dropped 4 dress sizes since May. I wear light compression 8-10 hours daily, use a vibration plate for 15 minutes daily, elevate my legs in the evenings, lift weights 5-6 days a week, walk as much as I can and eat low carb high protein. It was reassuring to hear her say I was ready to start maintaining as I was struggling to know when because my BMI is still so high but this is due to the lipedema fat and high muscle mass from exercise. She encourages the use of GLP-1 drugs for those who struggle to lose weight and is a big supporter of low carb.

She said that compression doesn't have to be heavy duty for lipedema only (no lymphedema) and recommends lipoelastic active leggings or even something like lululemon leggings but give compression a skip entirely if you don't feel it is benefiting you in any way or you are struggling to wear it. She also doesn't see much benefit in MLD or compression pumps either and believes that treatment should be focused reducing inflammation and weight management. She said that more and more research is starting to point towards lipdema not being progressive and the main trigger is weight gain. The hormonal factor she believes largely comes from the associated weight gain this has on our body and if you are managing your weight you shouldn't see any progression but I am not entirely sure I agree with this. I believe hormonal changes trigger inflammation too which can lead to things like increased pain and swelling which is what I experienced when starting estrogen gel without any increase to my weight.

All in all I was very pleased with my visit and feel so relieved to have finally been given a diagnosis. I feel for all the women in my family before me that struggled without the privilege of understanding why or what to do about it. I feel for my younger self who never knew why they didn't look like everyone else and the irreversible damage I did to my body in my presuit to fit into a certain mould. I had a little happy cry on my way out the hospital.