Understanding Lipedema
A hidden condition affecting many
Hey, this is Steph! I am excited that Erica Perusse, dietetic intern and graduate student is back again with an amazing article for Bariatric Food Coach. This time on a disease called Lipedema. Be sure the check Erica’s information and past articles linked below!
Hey friends! Recently, one of our wonderful bariatric patients reached out and asked us about lipedema. Did you know lipedema is frequently misunderstood and misdiagnosed, particularly among bariatric patients? This is why raising awareness about this condition is crucial, and we see this blog as a great opportunity to share valuable information. Certain conditions often hide in the shadows in healthcare, overshadowed by more well-known ailments. Lipedema is one such condition, often misunderstood and misdiagnosed, especially when it intersects with bariatric patients.
Today, let’s examine the term lipedema to better understand it and how it impacts bariatric patients. If you’ve ever felt like your legs or arms are disproportionately large, keep reading. It’s not just about weight. This might be the piece of the puzzle you’ve been missing.
What is Lipedema?
Lipedema, often called the “painful fat syndrome,” is a chronic disorder that causes an abnormal buildup of fat, usually in the legs and sometimes in the arms. It predominantly affects women and is often misdiagnosed as obesity.
But what makes lipedema different is that, despite living a healthy lifestyle, you may still struggle with a disproportionate fat distribution that doesn’t seem to respond to diet or exercise. This can lead to pain, mobility issues, and a deep sense of frustration.
It’s not the same as the fat we all have on our bodies. Lipedema is different, and that’s why no matter how hard you try, the usual weight loss methods just don’t seem to work. It can feel disheartening to put in the effort and still see those stubborn areas not change. You’re not alone in feeling this way; that’s the challenge of living with lipedema.
Signs and Symptoms
Disproportionate Body Shape: Your lower body (hips, thighs, and legs) looks much larger compared to your upper body.
Pain and Tenderness: The affected areas can be sore to the touch.
Easy Bruising: You might find bruises without remembering any injury.
Swelling: As the day goes on, your legs might swell more and more.
Skin Texture Changes: Skin might feel soft and cool, with a dimpled or uneven texture.
Causes and Risk Factors
The exact cause of lipedema is unknown but often runs in families, hinting at a genetic factor. It usually starts or worsens during hormonal changes like puberty, pregnancy, or menopause. This means women are primarily affected, though men can have it too.
How is Lipedema diagnosed?
Lipedema can be tricky to diagnose because it’s often mistaken for obesity or lymphedema (another swelling condition). A healthcare provider specializing in lipedema can help by looking at your medical history and symptoms; sometimes, imaging tests are used.
Managing Lipedema
While there’s no cure for lipedema, there are ways to manage it and improve your quality of life, like:
Compression Garments: These help reduce pain and swelling.
Manual Lymphatic Drainage (MLD): A type of gentle massage to help with fluid drainage.
Exercise: Low-impact activities like swimming or walking can be beneficial.
Healthy Eating: While it won’t cure lipedema, a balanced diet can help manage overall health.
Liposuction: In some cases, specialized liposuction can remove the diseased fat tissue.
The Interplay with Bariatric Surgery
The presence of lipedema adds layers of complexity for individuals considering or undergoing bariatric surgery. Bariatric procedures, such as gastric bypass or sleeve gastrectomy, aim to aid weight loss by altering the digestive system’s anatomy. While these surgeries can be transformative for many, they may not fully address the complexities of lipedema. Acknowledging and understanding the full scope of lipedema would only aid in providing effective treatment and support for patients.
The presence of lipedema adds layers of complexity for individuals considering or undergoing bariatric surgery. Bariatric procedures, such as gastric bypass or sleeve gastrectomy, aim to aid weight loss by altering the digestive system’s anatomy. While these surgeries can be transformative for many, bringing awareness to the condition of lipedema will benefit you, as it helps ensure a more comprehensive approach to your treatment and support.
Diagnosis Dilemma: Lipedema is frequently underdiagnosed or misdiagnosed due to its similarities with obesity. This can lead to frustration and delays in appropriate treatment, particularly for bariatric patients seeking solutions for their weight management struggles.
Surgical Considerations: Bariatric surgeons must know lipedema’s presence and implications during pre-operative assessments and surgical planning. Ignoring lipedema can result in suboptimal outcomes and dissatisfaction post-surgery.
Post-operative Management: Even after successful bariatric surgery, individuals with underlying lipedema may still experience challenges. The persistence of lipedema can impact body contouring results and contribute to ongoing discomfort and psychological distress.
Empower Yourself: A Holistic Approach
Empathy, understanding, and working together are key to helping you navigate your journey with lipedema, ensuring you feel supported every step of the way toward better health and well-being. We’re here to walk this path with you, because every person’s journey is different and matters to us.
Education and Awareness: Raising awareness among healthcare providers about lipedema’s existence and its distinct features is crucial for early detection and appropriate management.
Multidisciplinary Care: A multidisciplinary approach involving bariatric surgeons, lymphatic specialists, Registered Dietitian Nutritionists, physical therapists, and mental health professionals can provide comprehensive support tailored to these patients’ unique needs.
Advocacy and Support: It’s important to create a space where you feel heard, understood, and empowered to speak up for what you need. Connecting with others through peer support groups and online communities can provide the encouragement and guidance you deserve
You Are Not Alone
Remember, if you have lipedema, you’re not alone. Many people are living with this condition, and a growing community of support and resources is available. Understanding your body and seeking the right help can make a big difference.
Stay positive and proactive! As always, we’re here to support you every step of the way. If you think you might have lipedema or know someone who does, contact a healthcare provider to start the conversation.
Do you have any questions or experiences to share? Please do so in the comments below. Let’s learn and support each other!
Sources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8667633
https://www.medscape.com/viewarticle/984266?0=reg=1#vp_2
https://my.clevelandclinic.org/health/diseases/17175-lipedema
Other articles Erica has written Bariatric Food Coach:
Thanks Erica! Now I know why I have bumps in my legs and my thighs don’t look like they belong to me.
Thank you! I noticed after bariatric surgery that my right hip had a sizable ‘bump’, not found on my left; I guess it was hiding under my excess weight!
I now know to ask the right questions of my doctor, and see if this is lipedema –
Thank you so much for bringing Lipedema into the light! I’ve struggle with this disease for years and I’m only now able to have the surgery needed to slow the progression. I’ve had two of three liposuction and skin excision surgeries done by a board certified plastic surgeon familiar with Lipedema. This is crucial in fighting this disease. There are many “fringe” surgeons that are not plastic surgeons who do not do high volume liposuction in a hospital setting which is necessary for advanced cases of Lipedema. Education is the key by both the patient and the medical community!
Hi Erica , thank you for the article . I believe that I have lipedema . How do you go about find a provider who specializes in lipedema ? I want to find out if I do indeed have it.Thank you
Thank you, Francine, for sharing your story! We’d love to hear more how you were diagnosed and found the right surgeon. Feel free to leave a comment here or email steph@bariatricfoodcoach.com if you don’t mind sharing more!
Hi, Chrissy! A Primary Care Provider is a great place to start for any medical questions or concerns when you don’t know who to turn to. They are great at referring out to the proper specialist and hopefully someone they can recommend that comes with a good track record for care.
Thank you for your comment! We are so grateful to hear it’s helping you find the next step towards finding the answer.
Thanks for bringing this. I have lipedema which has since progressed into lymphedema in my lower extremities. I fought bariatric surgery for years but finally got it 4 months ago. Seeing my body go down in other areas while my legs remain large is devastating. There is limited avenues for care where I am. It’s like a secret society no one wants to talk about. It took 2 years for a proper diagnosis and then the you can lose weight but your bottom half will remain large speech. It’s a frustrating situation but I’m determined to maintain my mobility.
Thank you so much for sharing your story here @Tawanda. May it empower others to continue to seek the care they need – and know they aren’t alone.