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Remember, this is educational information only and not medical advice (and I am not a doctor nor an expert on endo). Always check with your qualified medical professional before making any changes to your treatment plan.

How to Find an Endometriosis Excision Surgeon

Can my regular gynecologist treat my endometriosis?

Unlikely. Endometriosis treatment really needs to be its own specialty, like the way that gynecologic oncology is. When it’s suspected that a patient has a gynecological cancer, they are referred to specialists who have extensive training in the diagnosis and treatment of these cancers. The same thing should happen when a patient has endometriosis – they should be referred to an actual expert in endometriosis.

Unfortunately, endometriosis is a disease that is mired by misinformation leading to gynecologists who are uninformed and misinformed about this disease. This is not those doctor’s faults – much of this stems from misinformation in their medical education, medical training, and the endometriosis clinical guidelines themselves. Because of this, many gynecologists think that they know how to treat endometriosis when in reality they don’t, offering the patient a hysterectomy or ablation as “treatments”, or telling them to stay on hormonal medications for years, instead of addressing the disease via excision or even informing the patient that excision is the gold standard treatment. This is often because they aren’t aware of excision, or think excision has the same outcomes as ablation or hormones (it doesn’t!) due to misinformation.

The term “specialist” means nothing

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.

However, there are true endometriosis experts or specialists, but it’s important to look at their qualifications and ask them questions to judge this, rather than the title they’ve given themselves – since again, anyone can say they are a specialist.

Who makes a good endometriosis doctor?

You should ask your surgeon questions to gauge their skill and experience level, their patient outcomes, their complication rates, their treatment philosophy, etc. I’ve listed 3 sets of questions in the links below.

Here are some common qualities:

They are a highly skilled, high volume excision surgeon, (often 100+ excision surgeries per year with 5+ years experience) who understands endometriosis and how to properly diagnose and treat it, with good surgical outcomes and low complication rates.

Some patients hear about how excision is the gold standard and ask their regular gynecologist to do excision on them, but unfortunately doing excision isn’t like asking your doctor to prescribe a specific medication. The surgeon either has the skills to expertly excise endometriosis or they don’t. To have those skills, it takes years of training and experience. 

Often they solely treat endometriosis and don’t practice obstetrics, general gynecology, or cancer at all.

This is because doctors who do obstetrics and other gynecology typically can’t get the high volume caseload (and therefore experience in endometriosis or the specific surgical skills need for endometriosis) since their time is divided between endometriosis and other practices.

The surgeon must know how to recognize endometriosis in all its colors, appearances, and locations, and how to safely excise it from all locations.

It is not enough to have done a MIGS (minimally invasive gynecologic surgery) fellowship. They need to know how to specifically excise endometriosis.

Also, if they can’t safely excise the endometriosis from a certain location, they also know when to refer more complex cases to more experienced surgeons.

The surgeon believes in complete excision.

If operating with them, they plan to excise (with no ablation!) endometriosis from all locations where it’s found:

• They won’t 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 operating room.
  
  
• 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.)

It’s important to excise all endometriosis, and an expert surgeon wouldn’t have excuses/reasons why it’s not.

You shouldn’t need to “qualify” for the operation in some way.

For example, the doctor says, “I’ll only operate if you do Lupron/Zoladex/another hormone for X months first.” Or “Your scans don’t show endometriosis, in that case you probably don’t have it so we won’t operate.” (Endo isn’t always seen on scans! Scans are not the deciding factor – it’s the patient history/symptoms that’s the most important part of making a suspected diagnosis of the disease.)

Excision surgery is the gold standard, and if the doctor believes after hearing your patient history that you have endometriosis symptoms, you shouldn’t need to jump through hoops to have excision if they are truly an expert excision surgeon. That isn’t to say that they don’t discuss other options with you – that is part of informed consent for them to inform you of the different treatment and management options and work with you to make the best choice for you. But one thing is discussing options, and another is telling you that your surgery is conditional on X factor, like you trying Zoladex first.

Excision surgery is operator dependent

Excision surgery 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.

It’s important to distinguish between excision surgery and expert excision surgery.

Doing excision isn’t enough. Unfortunately, some surgeons who call themselves excision surgeons do ablation instead of excision, or a combination of ablation and excision. For example, the surgeon excises your endometrioma, but ablates your superficial peritoneal lesions. If the surgeon doesn’t believe complete excision is necessary, they should refer the patient to someone who does. Others do excision only, but leave endometriosis behind unintentionally because they don’t have the skills to recognize subtle appearances of endometriosis; or they don’t excise deep enough or with wide enough margins. Others leave endometriosis behind intentionally because they lack the skills to safely remove it from all locations. If the surgeon can’t operate on more complex cases, they should refer the patient to someone who can.

Unfortunately, there are only a few hundred excision surgeons worldwide, and their skills vary, their experience varies, the number of surgeries they do a year varies, and so excision is not the same among all of us.

Where to find a surgeon

Nancy’s Nook (link below) is a potential starting place to find an excision surgeon, but it’s worth repeating that not all excision surgeons, even those on their list, have the same skill level or experience. Even if you find a surgeon using their 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 Nancy’s Nook list 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 that list 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.

Robotic Surgery

Excision surgery should be done via laparoscopy (minimally invasive surgical procedure using small incisions) and not via laparotomy (surgical procedure which involves a large incision in the abdomen). Laparoscopy can be via robotic surgery or a standard laparoscopy – both techniques can potentially give the patient a good outcome with low complication rates. What’s most important is not if it’s robotic or standard laparoscopy, but rather the surgeon’s ability to recognize endometriosis in all its colors, appearances, and locations, and to safely excise it from all locations. There are excellent excision surgeons with great patient outcomes and low complication rates who use the robot, and excellent surgeons who don’t.

The robot is just a tool. It doesn’t make or break your surgery, or mean that you will have any better or worse surgery because of it. However, if the surgeon does robotic surgery, it’s important to know that using the robot is also a skill in itself, and it can take 150+ surgeries for a surgeon to become skilled at using the robot. Therefore, you should also ask them questions to gauge their skills using the robot, such as how many surgeries they’ve done using it, how many excisions, how much training they’ve had, etc.