We have been around in the lipedema community since 2018 and have seen Facebook, Instagram, YouTube, etc. explode with lipedema content. While social media has allowed women to learn they have lipedema, we hope that someday women learn about the disease from their primary care physician, who can immediately discuss options rather than searching for them online. Women with lipedema, especially those dismissed for years by their physicians, are vulnerable to physicians who seem to be understanding but are marketing to them and have made millions off this disease. Even if surgeons are not directly marketing to you, their message often comes through on social media through “fans” who genuinely believe the hype that they are the “best lipedema surgeon in the world.” Social media is tilted towards more positive messages when the people who have had bad experiences don’t say anything or sometimes vent on places like Yelp, where negative messages should be heeded far more than positive ones.
Finding Good Surgeons Online Can Be Hard
We have found most surgeon lists on social media to be inaccurate and completely unfocused on ensuring that surgeons are safe, effective, and insurance friendly. Because of a few constantly posting non-plastic surgeons in the US and Europe, women, especially with early-stage lipedema, would not consider a surgeon without before and after photos. They do not realize that many plastic surgeons work for universities where they cannot post or frankly don’t feel comfortable asking patients to provide photos that they post online. We always tell women to talk with the surgeon, and they also may have photos they don’t post online. More complicated procedure photos involving abdominoplasty or breast reconstruction can also give you a good idea of a surgeon’s skills. Generally, plastic surgeons with a cosmetic practice that often supports their work with lipedema will not post too many lipedema photos as they are looking for cash paying “real housewife’s types for cosmetic surgery.
Be Cautious of Celebrity Surgeons
Even for plastic surgeons we work with, we want women to be cautious about “celebrity lipedema surgeons.” We love and highly respect the surgeons we recommend, but waiting a year to travel halfway across the country might not be the best option. You also might have issues depending on your insurance, and depending on your BMI, it might be faster and easier to see someone closer. Helping Coverlipedema.com members come up with a strategy to have a safe, effective, and fully covered surgery in a timely manner is very much what we do. Insurance coverage is one of the considerations, but we want women to make a surgeon choice that is right for them. We can provide insight and experience from the hundreds of women we have worked with and from direct conversations with surgeons themselves, that goes beyond social media research.