What is Lipedema?
Lipedema is a connective tissue disease that primarily affects women and causes painful fat accumulation and swelling, typically found in the hips, legs, and arms. Despite how common it is, many women go years without a diagnosis. My goal is to raise awareness about lipedema, share what I’ve learned through my own experience, and help other women understand this condition to remove the shame and provide much needed education.
Since I was a young girl, I’ve struggled with body image and weight. Like many women, I spent years on countless diets, being at war with myself and even battling binge eating disorder. I’ve done a lot of work to heal my relationship with food and my body, it’s not been easy, but it’s not impossible like I once thought it would be.
I’ve learned to treat my body with kindness and compassion after years of hatred and abuse, and that’s what I hope to help other women do through my blog.
In 2023, I was diagnosed with a condition I had never even heard of until the year before. A condition that I believe I’ve had since I was a teenager, but never knew about.
I was diagnosed with a connective tissue disease called Lipedema.
As I’ve learned more about Lipedema and what it is, I’ve come to understand that many women are likely suffering with this same condition and they have no idea, just like I didn’t.
That’s why I’m writing this post. It is not a post to share my story (I’ll do that later) but to help others understand what lipedema is, what it looks like, and what you can do if you think you have it.
If this post helps even one woman find answers or feel less alone, the vulnerability it’s taking to write it is worth it.
What is Lipedema?
Lipedema is a connective tissue disease that primarily effects women. It is a chronic medical condition that is characterized by a buildup of adipose tissue (fat) that is typically found in the buttocks, hips and legs, though it can also be found in the torso and the arms.
Lipedema can cause pain and swelling, and many patients also complain of bruising easily.
Lipedema is NOT obesity. Lipedema is not caused by your diet and lifestyle either, as many women with Lipedema have tried many diets and exercise to improve symptoms but many are are found to be unsuccessful.
Lipedema effects the body in a symmetrical way and is not usually found in the hands and/or feet. You can view pictures of Lipedema on the Lipedema Foundation website.
Signs & Symptoms of Lipedema
- Feelings of heaviness, pain and/or swelling in the legs (or effected region)
- Presence of nodules and/or fibrotic texture found beneath the skin that potentially creates an uneven, dimpled appearance (could be misdiagnosed as cellulite)
- Bilateral, symmetrical buildup of adipose tissue in the legs. Sometimes it impacts the arms and torso
- Can be resistant to nutritional intervention, exercise, elevation, diuretics, and bariatric surgery.
- Skin that feels soft, doughy or rubbery
- Areas that have Lipedema can be painful or tender to the touch
- Edema can also be present causing fluid to buildup and increase pain
- Feeling fatigued in the area of concern
- Ankle or wrist cuff, because the hands and feet are typically spared from the disease
- The texture of the adipose tissue can feel like rice, beans or walnuts due to the buildup of nodules.
What causes Lipedema?
Lipedema is not your fault. The cause of Lipedema is still being researched because we don’t have many definite answers as to where this comes from.
What we do know is that it’s reported to start or worsen during hormonal changes such as puberty, pregnancy, menopause.
The Lipedema Foundation is currently researching to hopefully determine the biological role of hormones, genetics, inflammation, and metabolism in Lipedema patients so we have a better understanding as to prevent, or at least slow, the progression.
Lipedema Treatment
Lipedema currently has no cure. Therefore, the management of symptoms is important for patients to understand so they can advocate for their well being and quality of life.
Finding a provider who understands Lipedema is a great place to start. You can use use the Lipedema Foundation Registry to find a healthcare professional in your area.
While there are many different options for treatment, I will list the most common ones I have become familiar with below. The Lipedema Foundation has a more detailed graphic with additional treatment options to consider.
- Wearing compression garments on effected areas
- Manage inflammation with proper nutrition
- Rebounding
- Compression/Pneumatic Pump
- Vibration Plate
- Managing stress
- Manual Lymph Drainage
- Proper Hydration
- GLP-1 Agonist Meds
- Surgical treatment for the removal of Lipedema tissue
- Exercise (especially aquatic, walking, strength training)
*Before starting or stopping any therapy or treatment you should consult with your healthcare provider and discuss the possibility of Lipedema.
How is Lipedema Diagnosed?
You will need a clinicial diagnosis based on a physical examination, symptoms and your health history. There is currently no lab testing that will tell you if you have Lipedema or not.
It is best to find a provider who either understands what Lipedema is, or someone who specializes in vascular, lymphatic or fat disorders because they are typically familiar with the condition.
Many doctors are still unaware of Lipedema. This is why awareness and sharing more about it is so important. Awareness will hopefully bring more treatment and therapies to aid in helping us live a better quality of life.
My Mission
It has taken me a long time, well over a year, to share here on my blog about Lipedema. It brings up a lot of emotions. But ultimately, as I’ve mentioned, awareness is so important.
My mission is to help women learn to love their bodies well. If you are suffering with Lipedema like I was, and you are without answers and living in pain, that can be really hard to do. It is possible though… and my hope is that through awareness and education, I can help Lipedema patients especially learn how to really care for their bodies, in their own way.
No two people are the same. Our bodies are different, they respond differently and that is ok. Learning to love your body well doesn’t mean our journey’s mirror one another, it simply means that you walk alongside one another on this path and commit to learning more, having compassion and choosing hope over fear every day.
Next Steps
If you suspect you might have Lipedema, I encourage you to visit the Lipedema Foundation to learn more.
