How to Find a Specialist

How to Find an Endometriosis Excision Surgeon

Anyone can call themselves an “expert” or “specialist” in endometriosis, because there is no formal standard in gynecology to qualify to use that title. A doctor might call themselves an endometriosis expert/specialist, but is only doing ablation or is only prescribing hormone treatments, and doesn’t even do excision.

A good endometriosis doctor is a highly skilled, high volume physician (often 100+ excision surgeries per year with 5+ years experience) who understands endometriosis and how to properly diagnose and treat it. Often they solely treat endometriosis and don’t practice obstetrics or general gynecology at all. It is not enough to have done a MIGS (minimally invasive gynecologic surgery) fellowship – the surgeon must know how to recognize endometriosis in all its colors, appearances, and locations, and how to safely excise it from all locations. The surgeon will not leave endometriosis behind because Lupron will supposedly clean it up. (It won’t!) They won’t leave endometriosis behind because endometriosis is supposedly the endometrium from retrograde menstruation (it’s not) and “it will just keep coming back with every menstrual cycle so why remove it all?” (It won’t). They won’t leave endometriosis behind because they didn’t do good pre-surgical planning and didn’t have the multidisciplinary surgeons they needed in the OR. They won’t leave endometriosis behind because it’s too “risky” to operate on the bowel, bladder, etc. (It’s generally not if the surgeon has the right training, experience, and skills.)

Excision surgeon is renowned as the most challenging gynecologic surgery. Even among doctors that do excision surgery, their skill levels and experience vary. Excision surgery is highly operator dependent, so the skills and experience of the surgeon are crucial and influence the surgery outcome. For this reason, many people are choosing to go to leading endometriosis centers that perform excision surgery as a component of their multidisciplinary approach to endometriosis, such as the Center for Endometriosis Care in Atlanta. Unfortunately, many people have to travel to find quality care; some people have to leave their country to get excision, if they can even get excision at all.

iCareBetter and Nancy’s Nook (links below) are two great starting places to find an excision surgeon, but it’s worth repeating that not all excision surgeons have the same skill level or experience. Even if you find a surgeon using their lists or another peer-reviewed list, it’s still imperative to vet the surgeon, look at patient reviews/lawsuits, and ask them questions (links below) to make sure they have the appropriate skill level to treat your case. You can use Google, social media, endometriosis FB groups, Reddit, Open Payments, and more to gather information on your surgeon to decide if they are the right fit for you. Also, just because you have surgery with one of the doctors on the iCareBetter or Nancy’s Nook lists doesn’t guarantee that you will be pain free afterward, that you won’t have complications, or that endometriosis won’t persist or recur.

Likewise, having surgery with an excision surgeon that you found and vetted that aren’t on those 2 lists doesn’t mean you are guaranteed to have a bad outcome. Some excision surgeons do not have a social media platform, are not well known, or work at academic institutions and rely on referrals instead of advertising to find patients. However, remember that anyone can call themselves an expert or specialist in endometriosis, so it’s vital to vet the surgeon and ask questions about their beliefs, training, number of excisions, experience, industry ties, outcomes, complication rates, rates of reoperation/recurrence, ability to treat complex cases, etc.

Resources

  • Nancy’s Nook Facebook Group – This private Facebook group has a list of excision surgeons worldwide in the Files section, and in another file explains how the surgeons are chosen to be put on their list. Skill level and experience vary among the surgeons listed. Even if you find a surgeon here, it’s still important to vet the surgeon to make sure they are qualified to treat your case.

  • iCareBetter– This platform helps connect patients to endometriosis surgeons via a peer to peer double-blind vetting process for their surgical and excision skills. Skill level and experience vary among the surgeons listed. Even if you find a surgeon on their platform, it’s still important to vet the surgeon to make sure they are qualified to treat your case. (Also – they list Pelvic Floor Therapists, but I don’t know how they find them or if they are qualified to work with patients with endometriosis.)

  • AAGL Physician Finder – Database with over 7000 surgeons that helps you locate surgeons within your area who perform minimally invasive gynecologic surgery.

  • How to Find a Doctor – A post from Nancy’s Nook, which has a great overview on what matters and what doesn’t matter when choosing a surgeon.

  • Questions to Ask Your Surgeon 1 – A list of questions from the Center for Endometriosis Care.

  • Questions to Ask Your Surgeon 2 – A list of questions to consider when vetting your excision surgeon, from Melissa at Eighty-Six the Endo.

  • Questions to Ask Your Surgeon 3 – Another great list of questions to consider when vetting your excision surgeon, from Kate at Endogirlsblog.

  • Health Grades – Database with doctor profiles where you can see patient ratings on them.

  • Open Payments – Look up your doctor and see if/what payments were made to them by drug and medical device companies.

Dealing with Insurance

In many cases, excision surgery is considered out-of-network for US insurance providers. That being said, there are also excision surgeons who are in-network with insurance; it will depend on the individual surgeon. Being in- or out-of-network doesn’t guarantee a good outcome for your surgery. Some surgeons have poor excision skills and are out-of-network; some have excellent skills and are in-network.