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.

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. Be wary of specialists who are trying to sell you products in their offices or on their website. 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 one is making which change.

Defining your Lipedema Care Team

This list is organized by medical profession, but in some places you may receive treatment from a specialty service or clinic dedicated to one condition such as Lipedema or one symptom like pain. There are a growing number of Lipedema specialty clinics. At these clinics you should expect to find connections to several of the professions listed here with specialized training in treating Lipedema and related conditions.

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 is likely to 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 may help. If you are looking for a new practice, you may want to consider working backwards. Read below for descriptions of specialists who commonly see Lipedema cases. Ask these specialists which local primary care practices are referring Lipedema cases to them.

Physical and Occupational Therapy / Physical & Rehabilitation Medicine

Skilled in a hands-on approach to care, these professionals develop Lipedema treatment plans focused on movement, pain management, and improving lymphatic function. For people with Lipedema, especially those at a higher Lipedema stage, physical and occupational therapists often perform decongestive therapy and manual lymphatic drainage to help reduce the tension and pressure in the affected areas. Look for certified lymphatic therapists for these treatments. Licensed members of the field can also help you customize exercise strategies to reach your goals considering symptoms like hypermobility. They may also offer help for joint issues and suggest functional manual therapy, avoiding procedures that could damage your fat tissue or fascia layers. If you are having trouble with normal activities that you need to live and work, you may also be referred to an occupational therapist who can help develop strategies that reduce the impact of Lipedema on your daily life. 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.

Vascular Medicine

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. While treatments like ablations may help with venous system functioning, treatment of Lipedema requires a multi-faceted approach that commonly includes conservative measures such as compression garments, manual lymphatic drainage, exercise, diet modifications to address pain and inflammation, and developing a strong support system for emotional health.

Pain Management

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 physical 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.

Plastic and Cosmetic Surgery

Lipedema surgery, particularly liposuction, can be performed by a number of surgical specialities including plastic and cosmetic surgeons. International and US Guidelines recommend that referral for surgery follow conservative therapy and should be performed by a surgeon trained in methods that preserve the lymphatic vasculature. Given the scarcity of surgeons with this training, referrals to a local practice may not be available. Be aware that the Lipedema reduction procedure often requires multiple surgeries, so multiple trips to the surgeon could be necessary. A  follow-up referral to a cosmetic or plastic surgeon may sometimes be offered to remove any loose skin that persists following Lipedema liposuction.

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.

Nutritional Health

There are many online resources that describe Lipedema diets or nutrition plans, and many patients have had individual success with these. Unfortunately, the scientific basis for these Lipedema diets remains largely theoretical. To date, there are no large randomized controlled trials that would provide data on whether any particular Lipedema diet is better than another. Even without strong studies, many patients find benefit in experimenting with several diets and finding the ones that work best for them. A licensed dietician can help design a safe personal experimental plan in a way that works best for your goals. They do this by paying careful attention to factors such as your lifestyle and other conditions that you may have like food sensitivities, allergies or health conditions that may be made worse by a particular diet. Look for licensed dieticians, and be aware that other professionals with similar sounding names may not have the same licensure requirements. Most of all, ask if they have experience with published Lipedema diets. Be very careful if someone is recommending you cut calories to an unhealthy level. Do they promote just one diet, or will they help you find the right one for you? If your dietician does not have experience in Lipedema, it may help to point them to resources like Legato, our Lipedema Library, or other recommendations.

Mental Health

Lipedema is not a mental disorder, but many people with Lipedema benefit from emotional, mental, and behavioral counseling. Licensed mental health professionals do more than talk. They can be very helpful in developing strategies to manage Lipedema symptoms like pain. They can also help their patients work through complex decisions and behaviors that come with treatment or when Lipedema interferes with your normal 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 

Podiatric specialists focus on the foot and lower leg. 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

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.

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.