Finding a Lipedema Specialist
The path to Lipedema diagnosis and treatment can be long. Since there is no easy laboratory or imaging test for Lipedema, there is also no single profession that administers the diagnosis. And since Lipedema affects many parts of the body, management of Lipedema can include many professions.
Being aware of different specialties can give you the confidence to navigate the healthcare system, and help you develop your care plan with your medical team.
Need a place to start?
The LF Provider Directory is designed to help people with Lipedema, their healthcare providers, and the broader Lipedema community identify therapists who have told us they treat Lipedema in their clinical practice. Check out our Provider Directory as a tool to support finding a therapist in your area.
Who makes the Lipedema Diagnosis?
The best data for this comes from the Lipedema Foundation Registry. Data analyzed from nearly a thousand women collected between 2019 and 2021 reveal that about 21% of Lipedema diagnosis is performed by surgeons. 22% are first identified by a therapist as having Lipedema, the “official diagnosis” being performed later by a physician. But aside from these, most diagnoses come from physicians with a non-surgical background (43%). Nurse Practitioners/Physicians Assistants and other types of healthcare providers account for the remaining diagnoses, along with a small number who received their diagnosis by participating in research.
Finding a Lipedema specialist near you is not always easy. There are many medical practices that advertise Lipedema services, but there are some things to avoid. Be wary of services that prescribe a single cure or speak in absolutes. Lipedema is a complex condition and there is no single treatment that is known to work for every patient. The Lipedema Foundation recommends connecting with other people with Lipedema through social media groups to learn about the specialists in your area and their patients’ common experiences.
As always, start new treatments by ramping up slowly and one at a time. Likewise, ramp down slowly. Making multiple major changes simultaneously will hinder your ability to know which treatment is making which change in your symptoms.
Defining your Lipedema Care Team
Not every person will see every specialty on this list. But each specialty brings a unique perspective to the care and treatment of people with Lipedema. This list was created by reviewing the medical literature, and reflects the referral patterns documented in published medical papers.
Primary Care
Your primary care doctor may have been trained in internal medicine or family practice. These physicians specialize in an ability to diagnose and manage a tremendous number of conditions. Unfortunately, Lipedema is not well recognized in our healthcare system, but your primary care doctors should see you as a partner in arriving at a diagnosis. Bring Lipedema to their attention. To help the conversation, ask if they are comfortable diagnosing Lipedema, if they have treated others with Lipedema, or ever made referrals. The Lipedema Foundation resources, including brochures and the Clinician’s Guide to Lipedema may help.
Therapy Professionals (including Physical, Occupational, and Massage Therapists)
Oftentimes, these therapists have been certified in lymphedema therapy (CLT), and have received training on Lipedema. They typically offer specific treatments like Manual Lymphatic Drainage (MLD), recommendations/fitting for compression garments, tailored exercise programs, mobility techniques, fibrosis management, patient/caregiver education, and other modalities. Check out the Lipedema Foundation’s Provider Directory to find a therapist offering treatment for Lipedema in a city near you. While a therapist cannot make an official medical diagnosis, they are often the first person to recognize Lipedema and direct the patient towards a physician (often an MD or DO), for confirmation.
Learn more about these professionals here.
Vascular Medicine
Vascular medicine immediately brings to mind images of arteries and veins. But this area of medicine is also a home for expertise on vessels of the lymphatic system. Vascular surgeons, in fact, are one of the few medical professions where you can find Lipedema diagnosis and management as a core requirement of their advanced medical training programs. A vascular specialist can determine if comorbid vascular diseases, such as venous insufficiency, justify treatments like venous ablation – or if conservative measures suffice. As venous procedures have not been found to effectively treat Lipedema symptoms, be sure to ask your clinician for clarification if these procedures are being recommended, as well as information on non-invasive, conservative treatments. Other vascular medicine specialists, such as cardiologists, may be seen at different times on the journey to a diagnosis, or for management of complications from other disorders that tend to co-exist with Lipedema.
Pain Management Specialists
Pain is a hallmark of Lipedema. While pain may be managed by many specialties, in complex cases you may receive or ask for referral to pain specialists. These practices can involve a wide range of professions from the therapists noted above, to physicians with backgrounds in anesthesiology, neurology, and psychiatry. In recent years, pain management science has matured considerably, offering many data-driven care plans that reduce reliance on surgery and medication. These can include motivational approaches, or even adjustments to diet and exercise. Your pain management specialists should be able to work with your goals to help develop a safe and effective strategy to address Lipedema pain.
Surgeons
Lipedema patients often seek surgery in order to alleviate pain, increase mobility, decrease joint stress, and improve their quality of life. The most common procedure to remove Lipedema tissue is liposuction. Research is still evolving on the effectiveness of liposuction for Lipedema, and though there are anecdotal reports of pain reduction and improved mobility and QOL, there are also reports of regrowth of Lipedema tissue outside the treated area as well as complications such as prolonged edema after surgery. It is also important to note that pre- and post-operative liposuction protocols vary widely amongst surgeons treating Lipedema. Debulking, lifts, or resections may be recommended, and depending on a Lipedema patient’s comorbidities, vein procedures, knee and/or hip replacement, and bariatric surgery to treat abdominal obesity are other procedures that could be suggested. International and US Guidelines recommend that a referral for surgery should follow an attempt at conservative therapy first. It is important to seek out a clinician who has knowledge of Lipedema and works with the condition regularly. Be aware that the Lipedema reduction procedure often requires multiple surgeries, so multiple trips to the surgeon could be necessary. Individual results may vary, and patients and referring clinicians should always do careful research when considering surgical procedures as an intervention.
Dermatology
In higher stages, or when Lipedema occurs alongside other conditions like lymphedema, a dermatologist may be recruited. These physicians help monitor the skin and prevent or treat changes when they occur. For some people with Lipedema, especially those outside the United States, their first diagnosis of Lipedema and even surgical treatment, may come from a dermatologist.
Registered Dietitians
There is not one diet or nutritional intervention that has been proven to treat Lipedema effectively, though there is preliminary evidence that keto, low carbohydrate/high fat, and rare adipose disorder diets may improve symptoms. More research is warranted in this field, but registered dietitians (who are familiar with Lipedema) can help patients develop healthy eating behaviors and work to create an eating plan that might help inflammation and pain (two prominent issues for Lipedema patients) as well as promote overall health and well-being.
Mental Health Professionals
Lipedema is not a psychological disorder, but people with Lipedema may find emotional, mental, and behavioral counseling beneficial. On average, it can take 10 years to receive a Lipedema diagnosis after seeking medical attention. Many patients report being dismissed by medical professionals, who claim that their pain is imagined or exaggerated, or that they need to diet and exercise more rigorously to lose Lipedema-related fat. As a result of this and other challenges, feelings of hopelessness, self-doubt, isolation, eating disorders, and in the worst cases, suicide, may occur. Mental health professionals can provide valuable assistance in managing Lipedema symptoms, such as pain, and helping patients navigate the complexities of treatment and the impact of Lipedema on daily life.
Allied Fields
Some fields receive their patients more by referral than by patients seeking them out. Your doctor may suggest that you work with members of these professions to support an accurate diagnosis or skilled treatment.
Medical Imaging
You may be referred for specialized imaging tests to help rule out other conditions like lymphedema. Depending on the guidelines being used, ultrasound, CT, MRI and methods that visualize the function and structure of the lymphatic vessels may be ordered. Although imaging is used largely to exclude other conditions, it is a pivotal area of research, and may help provide a definitive diagnosis as the research behind Lipedema progresses.
Geneticist
The genetics of Lipedema is poorly defined. But some patients may be referred to screen genetic patterns that might suggest other disorders. Ehlers-Danlos syndrome, especially the hypermobility type (hEDS), and lymphedema can be associated with specific inheritable mutations.
Podiatry
Podiatrists diagnose and treat disorders, diseases, and injuries of the foot, ankle, and lower limbs. They may be recommended when mobility and gait are a concern. In higher stages or in combination with other conditions, podiatrists can support effective wound care in the foot and lower leg.
Other Practices
Though not prominently mentioned in medical literature that we reviewed, many other professions may offer benefits to people with Lipedema. Here are some experiences that women with Lipedema have shared with the Lipedema Foundation through the Lipedema Foundation Registry, social media, and in our work with the patient community.
Rheumatology
Because some symptoms overlap with immune-related diseases, a Lipedema patient may be referred to a rheumatologist to test for diseases associated with an overactive or insufficient immune response. Rheumatologists can also diagnose and treat many conditions affecting the interaction between the skeletal system and muscles.
Naturopathy
This term covers a wide range of alternative or complementary medical approaches. While no data support specific use in Lipedema, some patients report success with alternative medicine approaches.
Endocrinology & Obesity Medicine Specialists
Because Lipedema is often confused with obesity, many women with Lipedema will see an endocrinologist before other specialists. While research supports the idea that Lipedema is associated with hormonal changes, management of reproductive hormones is not the mainstay of treatment. For now, your endocrinologist may be a key player involved in weight management as well as the detection and treatment of thyroid issues, which may affect a third of women with Lipedema. Since many women with Lipedema often have a long relationship with their endocrinologist, these doctors may provide an important resource for documenting changes over time, responsiveness to therapies, and helping strategize referrals and insurance issues. As new research emerges, endocrinologists may take on a greater role in Lipedema treatment. Similarly, if a patient has co-morbid obesity, they could benefit from seeing an obesity medicine specialist for proper treatment.
Obstetrics and Gynecology
Like endocrinology - it makes sense that this field is sometimes the first to notice and diagnose Lipedema. Given that times of hormonal change are believed to be triggers for the development of Lipedema, attention to changes occurring at puberty, pregnancy, and menopause will likely reduce the time to diagnosis for many women.
A Call to Action
Healthcare is complex. Although no good data exist to assess the details of where referrals for Lipedema care is happening, it is clear that Lipedema remains under-recognized in many medical professions. You may have a role in raising awareness with professions who are still learning to recognize Lipedema. Consider sharing Lipedema Foundation resources, including this website and our brochures when you encounter members of the community who may be in a position to recognize Lipedema in their patients.
A note on insurance
Although this article describes professions and procedures that are a part of Lipedema care, not all will be covered by insurance. Talk with your health care providers about coverage for office visits and services. Under recent laws in the United States, your insurer is also required to inform you of how to appeal their decisions, including decisions related to preauthorization.