Lipedema, perimenopause and diet

Lipedema (Lipoedema) is a connective tissue disorder, that comes on in puberty, and during hormone change such as pregnancy, perimenopause and menopause. It causes painful fat growth deposits – often in the legs and sometimes in the arms and other parts of the body too. Learning that I had this painful condition has literally changed my life.

I’ve spent most of my life on a diet. I had an eating disorder for over a decade and have had an ongoing battle with how I perceived my body to be. But, lately being diagnosed with lipedema, it all makes sense to me now.

I maintained a slim figure, eating way too little and exercising way too much. It was not healthy. I had bulimia. And this continued throughout my teens and into my early twenties.

I remember once telling my GP that I couldn’t stop making myself sick. His response was to tell me not to to be silly, that I was a healthy girl and when I pointed out my ankles… he said I had a nice “turn to my ankles”... awesome… I now had been given licence by my own doctor to continue vomiting. He didn’t seem to think there was an issue.

In fact, when I pushed further. He prescribed me speed. Yep. My GP put a skinny 19 year old girl on speed.

That year at Uni, I suffered. I hardly ate. I hardly slept. And my weight plummeted. These wee pills I had been prescribed made it near impossible for me to eat… or sleep for that fact. Geez, I look back now and am gobsmacked at how I treated my body.

No matter how much I worked out though- my leg shape remained fairly consistent. I had little shape. One time my flat mates boyfriend commented that I should get to the gym. Nice. Thanks for that.

My turning point was after I’d hit perimenopause. My legs were getting progressively more painful and my knees hurt really bad. Lipedema not only causes more tissue to build up in your legs. It causes that tissue to be super painful. and put pressure on your joints. This for me was the turning point.

I didn’t need to be model thin or have an athletes body- but when I struggled to sleep due to the pain, that was when I knew that I had to do something.

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How To Get A Lipedema Diagnosis

It’s not easy to diagnose Lipedema. There is no blood test. Yet. Although new research out of Australia on Lipedema has confirmed that there is a specific gene that has been isolated which causes the fat cells to grow much like cancer cells, independent of exercise or calorific intake.

A lot of women I know with this condition are super fit, work out hard and watch what they eat. Love Island star Shaughna Phillips has recently undergone treatment for lipedema and talks openly about her diagnosis and treatment. There’s a few celebrities that have come forward to confirm their lipedema diagnosis. Shaughna’s also made a YouTube video you can watch here, which is pretty useful.

Diagnosis is normally done in via taking a family history, (lipedema runs on families and often if your mum or grandma had it, thats a good indicator), physical presentation (little shape in legs, small waist), pain (tender to touch, often painful at night for me too, and when my dog walks on my thighs!), easily bruising, not responsive to diet or exercise.

No one loves their body fully and we all have spots that we’d like to change. And with dietary changes and exercise most of us can, and do change our bodies somewhat. But with lipedema, weight loss is still possible but the general shape of the legs doesn’t change much.

I saw my GP first… and cried a lot! It was such a relief to finally talk to someone about something so private and so close to to my heart. I told her what I needed and what I wanted. She took some photos of my trouble spots and sent them to a private plastic surgeon.

She also put in a referral for me to the Vascular clinic at my local hospital. Every region is different but some offer free compression garments, which are a must when managing the condition long term and after surgery. I also had a consult with an amazing private vascular clinic to check my veins and make sure there was no issues prior to me embarking on surgery.

Then, I had my consult with my plastic surgeon. He too was amazing and has operated on many women with lipedema. He confirmed my diagnosis and we talked about surgical options. I’m booked in the have the diseased fat removed by liposuction in a few months and couldn’t be more excited with my decision.

It’s been a long long road to finally get here and I’m now staring down the barrel of only 10 weeks ’till I have the life changing surgery, that I now wish I had had done 10 years ago!

The plastic surgeon will do water assisted liposuction (WAL)- which is apparently better for lipedema and helps preserve the lymph vessels. I’m getting my lower legs done and I’ll have from above my knees to my ankles worked on. My knees and ankles are always super painful- so, apart from the fact that this will no doubt alter my no shape legs a lot – I’ll also hopefully alleviate my pain.

I’ve read plenty of anecdotal reports from other women who have had surgery and they are super pleased with the reduction in pain. I just want to be able to exercise and sleep pain free!

I’m aiming to try to lose any residual non-lipedema weight prior to my surgery to give me the best results. Having lipedema is not an excuse for not trying to keep in shape physically. I do have a few extra pounds on (thank you lockdown) and I’m aiming to lose these to be in the best shape I can be naturally.

Lipedema and Perimenopause

I knew something was amiss after puberty- around 16 years old…I was skinny but had little shape to my ankles. Not overly noticeable and it didn’t really effect me until after I’d had my 2nd baby in my thirties.

After pregnancy number one I bounced back pretty quick and was my slim self pretty fast. I still had unshapely lower legs, but was thin.

Pregnancy number two and three I put on a bit more weight. And it was after number three that my legs got a bit worse. It wasn’t until I hit perimenopause in my forties though that the pain started. I started having really bad tendonitis in my achilles on both ankles. And my knees grew painful fat pads above the knee and on the inside leg. My thighs hurt when touched and I had trouble sleeping with the pain my legs at night. I also experienced restless legs syndrome.

The hormone S*&t storm that is perimenopause was clearly having an impact and this is when the penny dropped. Women do tend to put a bit more weight on during peri menopause and find it harder to lose any extra pounds but this is generally around the middle. And, I was still in good shape, despite my lower legs becoming worse.

After doing some research and realised that my shape was probably due to lipedema. Thats when I decided to take action. After all these years. Had I known earlier or there was more awareness about the disease, I probably would have had surgery in my twenties. Then spent the past few years wearing cute ankle boots and other things I have not been brave enough to wear since I was a teenager.

Lipedema and Diet

Diet is one area where you can make a huge difference to your condition. I’ve eaten well for a long long time. Yep, I’ve had my ups and downs. And eaten food that did not serve me well. Like processed food, junk food and sugar. But in general I’ve kept a pretty good diet. Fuelling my body the right way and taking care of myself.

Since learning I have this condition I avoid sugar and I avoid alcohol. I’d been pretty much alcohol free since my thirties anyway as it never agreed with me. I might have one beer once a month or one glass of rose on a hot summer day. But in general, no alcohol. Now, alcohol makes my leg pain so much worse and I will suffer if I do have wine for the next day or two.

I have arthritis and asthma, so I’ve had a pretty clean diet for a while- and avoid gluten and other food that tend to cause me inflammation. It just makes me feel better. But now with lipedema I tend to try to aim for lower carb and maintain a more keto way of eating.

Carbs tend to inflame me and with lipedema, carbs (sugars) have been anecdotally found to increase pain and swelling and potentially make lipedema worse. Eating a well balance diet with plenty of protein and vegetables – lots of water and I find minimising processed carbs like pastas, breads and white rice certainly helps.

I go for things like Atkins bars for treats or snack or popcorn. I try to limit white, empty carbs and don’t touch processed sugar. I know I need to be at my best when it comes to diet and exercise. And it’s a way of life. Not a diet for me. I eat twice a day. Lunch and dinner only.

And, do intermittent fasting (I’ve done this for around 4 years now). I do 16:8 fasting. Which means I don’t eat after around 7pm. And then again start my eating after 11 am the next day. This works for me to keep my weight down and also help me to make good food choices.

I will have treat foods now and then – life is made to be lived right! But am super careful about amounts and about making good choices outside of these times.

A full on keto diet is a bit of a leap for me personally. So, I just go with low carb, and semi keto. I’ve heard some women do well on full keto, but I just know thats probably not for me. You have to do what’s sustainable to you, and for me- low carb, sugar free is the way to go.

I may change my way of eating to full keto if I worsen, but for now, I’m on track.

One of the things I noticed works best for me is maintaining an adequate intake of vitamin D. I take a high dose once a month (also for bone health, as I was bulimic in my teens). I also take magnesium and vitamin C.

When I’m in pain at night I’ll take some ibuprofen. Or my go to are CBD gummies which fro me, help me sleep way better.

Finally, I’ve started taking apple cider vinegar (ACV) gummies as a way to boost my gut biome and increase my vitamin B intake. I use Goli, they are super tasty and easy to stomach. I’m now hooked. They are vegan and gluten free, provide good levels of B9 and B12, and support my gut health. I’m a firm believer that all health starts in your gut. So, these are the perfect addition for me.

I walk every day – walking helps keep the swelling and pain at a minimum. And, I recently bought a vibration plate that seems to help move fluid. I also turn the shower on cold and run it over my legs at the end of my shower. Hot water expands… cold water constricts, so you’ll be “pumping” the lymph in your legs with this method. MLD Manual Lymphatic Drainage massage also helps… you can find a great therapist, or learn to do this yourself at home.

I also have a stationary bike- which is great when I can’t get outside for a quick turn of the legs. Especially as I work at a desk, on a computer most of the day. I also work from home- so this makes it easy for me to take micro breaks and get my legs moving.

Lipedema Treatment Options

I’m booked in to have surgery in a few months time! I can barely wait. Now that I have made the decision to get surgery I cant believe I have not looked into this earlier. There are a few things that do however help with managing lipedema, without the need for surgery, but surgery is considered the gold standard for lipedema treatment. Choose what’s right for you.

Lipedema (Lipoedema) fat does not go away on its own. There is no amount of diet or exercise that will reduce lipedema deposits. The tissue simply doesn’t act like normal adipose tissue 😦 (serious sad face).

I’ve been fit and healthy my entire life, yet my legs do not change. The only way to get rid of this diseased tissue completely is through lymph sparing liposuction.

There are however a number of treatments available to sufferers of lipedema – many I’ve tried. Some with great success.

I’ve just received my compression garments- Bioflects from Amazon. These are grade 2 compression and I’ve got to say, after just a couple of hours wearing them (I’m starting slowly to get used to them) my legs felt SO MUCH BETTER.

I’ve also been custom fitted for a pair of Juzo compression leggings for after my surgery. These are thigh high ones as I will have to keep them on for a number of weeks full time after the surgery – I’m just having my lower legs done. These are firmer than the Bioflects as they are post op garments.

Lipedema Treatment Options List

1. Compression garments – custom made, grade 2 seem to be the best, but off the shelf will work too. Just make sure they are fitted correctly and you don’t have any digging in areas. Ask your doctor, they will tell you what you need!
2. Diet- low carb/ anti inflammatory /keto diet – Do what works for you! In general, stay as close to real, whole food as possible and experiment with your trigger foods. There is no one way that works for everyone. Don’t be fooled by fads.
3. Low impact exercise – like walking, yoga and swimming. Moving your body daily is the key takeaway here.
4. MLD- Manual Lymphatic Drainage – Find a provider in your area who you can trust and who understands the condition.
5. Pneumatic pumps – These are great for moving fluid and work well, especially if you also have lymphedema. You can rent these in most areas.
6. Supplements – Talk to your health practitioner first. Do what’s best for your own body.
7. Vibration plates – Helps alleviate pain and fluid build up. Cheap online.
8. Massage guns – Targeted relief for trouble areas or areas that are hard.
9. Dry brushing – Gloves or a hand held brush each day to stimulate your lymph system. Ask your doctor about methods.
10. Surgery – If it’s right for you. Always do your homework. Surgery IS NOT the easy option.
11. Quadrivas therapy – new and upcoming treatment option.
12. Vascular treatments – To treat varicose veins and other vascular issues.

Lipedema Online Support Groups

Theres a ton of great groups on Facebook to help you in your journey. Don’t be scared! There are women in them with all grades and types of lipedema. It progresses differently in different people and sometimes if you’re younger, it will manifest in subtle ways.

I love the info thats available in some of these forums. Just choose which works for you. Some I found were very Woe is me. You can do something about this disease. So, don’t be sucked into the negativity. Find a group that suits you, and ditch the rest. Lipedema is not an excuse for being overweight. Just as much as having lipedema is not your fault. You can eat well. You can move well. Work with what you’ve got.

Lipoedema New Zealand is a great group if you’re in NZ

Lipedema Warriors is another good one- general and worldwide

Liposuction for Lipoedema Australia is great if you’re in Australia

Keto Lifestyle for Lipedema is a good one for tips on which foods to avoid

Global Lipedema Awareness – Surgeries/Doctors is a goodie for surgical information and surgeons in your region

There’s also a couple of great women on Instagram that post about their lipedema journeys. Sara_lipedema is a goodie – she’s had a pretty incredible transformation and is a great source of courage and inspiration.

Many, many women with lipedema are not over weight. So, some women don’t even know there is an underlying cause to their pain. Sara’s a great example of this. (Image from her instagram).

me_and-my-lipedema is another good one – a non surgical approach using diet, exercise and compression. And, holistic_nutrition_princess is also a fave. Aimee is a nutritionist and has lipedema and gives great tips on embracing a keto diet for lipedema.

Celebrities with Lipedema

Theres a bunch of celebrities and influencers who have come out as having lipedema. This is great! It normalises the disease and hopefully helps some women feel more inclined to either seek treatment- whether conservative or surgical… and feel better about their own bodies.

Just because a woman has larger legs doesn’t necessarily mean she has lipedema. Theres been a swag of articles about which celebs could potentially have it. Most of which is generally click bait.

Kylie Jenner and Mischa Barton have been said to maybe have it. But, I’m not sure. Until they communicate that directly to the world, that’s their business. It’s incredibly disingenuous to comment on another woman’s body. Don’t do it. The only celebrity I know that has come out to say she actually has lipedema is Shaughna Phillips. Shaughna talks openly on her Instagram page about her journey. She’s had surgery and uses various conservative treatments to manage her condition.

Women of all shapes and sizes develop lipedema. And, women of all shapes and sizes have different bodies. Just because your legs have a certain shape doesn’t mean you necessarily have lipedema. I’m not keen on the lipedema bandwagon rolling into town as a trendy or hip thing to have.

Alicia Keys, Mya and Kirstie Alley all have been said to maybe have the condition. Again, women CAN HAVE DIFFERENT shaped bodies and not have lipedema. Let’s not label women bodies. Lipedema is a disease, not a fad.

Wrap up

I’ll report back in after my surgery. I’m really looking forward to feeling the result of less pain and having the additional benefit of shapely legs. I’m certainly not expecting miracles. But- having lived like this for a long time now, any improvement will be a massive win.

Lipedema is not your fault. It’s a disease. One in ten women are thought to suffer with this condition globally. So, go see your health professional. Get a diagnosis. There are things you can do to help with the pain. And there are ways you can manage this. Diet, exercise, compression garments and surgery are all on the table to help you live your best life. Don’t get caught up in the whole self loathing cycle. You can do something for yourself to feel better.

Disclaimer: This post talks about lipedema, diet, surgery and perimenopause, I’m talking from my point of view only. I am not am medical professional, so the content above is just anecdotal from my own perspective. It’s not meant as medical advice in any way, shape or form, and you should always consult your own medical team for both your own diagnosis, and your own treatment plan. This is what’s worked for me.