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How to Find an Endometriosis Excision Surgeon

Can my regular gynecologist treat my endometriosis?

Almost never. Endometriosis treatment really needs to be its own specialty, like the way that gynecologic oncology is. When it’s suspected that a patient has 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 –  this is not an endometriosis specialist.

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 excision surgeon?

It doesn’t matter if they call themselves an endometriosis specialist or not – it matters what they do in their practice. Therefore, you should ask your surgeon questions to gauge their treatment philosophy, as well as their surgical skill and experience, patient outcomes, complication rates, etc. I’ve listed 3 sets of questions in the resources links below.

Here are some ideal qualities:

They are a highly skilled, high volume excision surgeon, who understands endometriosis and how to properly diagnose and treat it, with good surgical outcomes and low complication rates.

High volume: on the low end, this is often 100+ excision surgeries per year with 5+ years experience. However, truly high volume would be 250-300 cases per year, which include complex cases. The top surgeons have done thousands of excision surgeries over the course of their career.

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. To have those skills, it takes years of training and experience.

Training: Ideally, the surgeon will have done a specific endometriosis excision fellowship after or in conjunction with their MIGS (minimally invasive gynecologic surgery) fellowship. Generally, this is hands-on training under another more experienced excision surgeon which involves operating on endometriosis under their supervision and direction. At a minimum though, surgeons should have done a MIGS (minimally invasive gynecologic surgery) fellowship.

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 needed for endometriosis) since their time is divided between endometriosis and other practices. Ideally, the surgeon’s caseload would be focused on endometriosis excision. But if not, then at a minimum a high volume surgeon (who isn’t doing obstetrics) with years of experience in gynecological surgeries, among which some of these surgeries are excision.

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

They need to know how to specifically identify endometriosis to excise it. For example, endometriosis can be clear, inside peritoneal pockets, or in tissue atypical in appearance. If the surgeon can’t recognize all endometriosis, they may leave disease behind.

There is also debate about “microscopic” endometriosis. While it does exist, it’s not known if it actually causes the patient an issue. Typically, endometriosis isn’t left behind because it’s microscopic, but because the surgeon doesn’t know how to recognize subtle appearances of endometriosis. Dr. David Redwine did a study showing that the incidence of “microscopic endo” (endometriosis that wasn’t seen during surgery) goes down in surgeons that have more experience in recognizing endometriosis. If your surgeon blames your post excision pain on microscopic endo, or has an attitude like, “well we got what we could, but you know, that microscopic endometriosis is probably what’s causing you problems still!” then this suggests the surgeon may not be as knowledgeable as thought about endometriosis and you may need a second opinion.

The surgeon needs to be able to safely excise it from all locations.

While severe complications can happen even in the best of hands, these should be rare.

You can ask your surgeon questions like:

  • What kind of experience do they have with nerve-sparing surgery? Do they have patients with pelvic nerve injuries? Are they able to safely navigate around the nerves, or excise endometriosis from the nerves?
  • What are their ureter complications rates? How often do they have patients with ureter injuries? How often do they have to put in a stent?
  • Do they have patients with long term organ dysfunction?
  • How often do they need to give the patient a colostomy bag? For bowel resections, many expert excision surgeons have a 1-4% temporary (never permanent) colostomy rate depending on where the bowel resection is performed.
  • What do they do if they come across endo they can’t safely excise? (For example, depending on the surgeon’s skills, they may not be able to excise from the diaphragm, lungs, bowel, etc). If they feel they can’t excise from a certain location, they should know when to recognize their limitations and refer more complex cases to more experienced surgeons.

Your surgeon should consistently be having good surgical outcomes with low complication rates.

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. 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.

Unfortunately, some surgeons who call themselves excision surgeons do ablation instead of excision, or a combination of ablation and excision (for example, they excise your endometrioma and deep disease but ablate superficial endometriosis). 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, such as the bowel or bladder. A good surgeon can recognize when the case is beyond their skill level and refer the patient to someone with more skills who can operate on more complex cases.

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. Some surgeons are just starting out with excision, others have done over 7,500 cases! It can’t be stressed enough that different excision surgeons have different skill levels.

It may be better to have no surgery than to have surgery with an inexperienced/non-expert endometriosis surgeon.

While it’s up to you as an individual, some people find it’s better to wait to operate* until they find a high volume excision surgeon.

*Of course, there are less common situations where people need immediate surgery such as bowel blockages, ruptured appendix, ovarian torsion, and other life threatening situations. If you are choosing to wait to excise your endometriosis, work with your doctor to monitor your disease via scans, especially if they suspect bowel or ureter involvement.

Here are some of the common situations patients face with non-expert or less skilled endometriosis surgeons:

Ablation surgery

Many patients have had an ablation surgery, which didn’t provide long lasting relief, resulting in them needing an expert excision surgery anyways (meaning another surgery later on because the first surgery didn’t help). For some people, their pain worsens after ablation, which can leave behind carbon and thermal damage, stimulating a foreign body giant cell reaction and becoming its own cause of pain. Ablation can also bury endometriosis under scar tissue which can make future excision surgery more complex.

Incomplete surgery

Some people have an incomplete excision. It could be that the surgeon didn’t excise deep or wide enough, or the surgeon left behind endometriosis on an organ like the bowel or bladder (either intentionally or unintentionally). An incomplete surgery means not all endometriosis was removed, and this can result in continued pain and symptoms. Some people may then need to have another excision surgery as this one didn’t provide them with the relief they’d hoped for. 

(Note: even with a complete excision, recurrence is possible, and some people may need multiple excision surgeries. However, various studies suggest that recurrence rates are impacted by the completeness of the excision, so having a complete excision each time could help improve surgery outcomes.)

Surgical complications or unnecessary procedures

Surgeons have different success and complication rates, some having much higher complication rates than others. For example, some excision surgeons have extremely high permanent colostomy rates when operating on bowel endometriosis, even though experts generally agree that bowel endometriosis is typically treatable without the need for a colostomy (and if in the low chance that the patient ends up needing one, it wouldn’t be a permanent one!) Surgical complication rates go down with the more skill and experience a surgeon has.

To me, this is the worst potential outcome of operating with a non-expert excision surgeon: patients can have injuries to their organs, long term organ dysfunction, bladder or bowel damage, injured nerves, etc and end up with more pain or symptoms than prior to their surgery.

Across the world, lack of access to high volume excision surgeons is a huge problem.

Oftentimes, the only surgeon people have access to is a less experienced one because in their country there may be no access to a high volume expert and they aren’t able to travel. Because of this:

  • Some people may wait to operate until they can go with a high volume surgeon.
  • Some people may try to find the most experienced surgeon they have access to, understanding the surgeon’s limitations. For example, this might be a surgeon who has done an endometriosis-specific fellowship, but who hasn’t done many cases yet in their own practice. Or this might be an OBGYN who has done a MIGS fellowship (although no specific endometriosis training) and has many years experience doing various gynecological surgeries. See this Instagram post from EndoGirlsBlog to help understand the range of skills and experience different surgeons can have for endometriosis.
    • Hopefully our surgeons will have honest conversations with us about their limitations and expected outcomes. If the surgeon feels they can’t safely excise from a certain location, like deep disease, or on the bowel, diaphragm, lungs, etc, they should know when to recognize their limitations and refer the patient to a more expert surgeon. What is too risky for one surgeon likely isn’t another with a higher skill level.
  • Some patients may opt for a hysterectomy knowing it’s not a treatment for endometriosis (which by definition is located outside the uterus), but it may be the only surgery they have access to and they hope removing the uterus will remove a source of pain. See my page on hysterectomy for details, because it’s vital to know that patients may continue to have pain and symptoms post hysterectomy.  

Surgery can be an enormous financial, emotional, and physical undertaking for a person. One should weigh the benefits vs the risks, and to do so you need informed consent, which is why it’s so important to ask the surgeon questions to judge their skill level, in order to operate with surgeons who consistently have good surgical outcomes in the procedures they are doing.

Robotic Surgery

Laparoscopy can be via robotic surgery or a standard laparoscopy – both techniques can potentially give the patient a good outcome with low complication rates. For more in depth info, see my page here.

Where to find a surgeon

You can search for surgeons in your area through the internet, ask patients for recommendations, use the AAGL Physician Finder below, or through other methods. 

No matter where you hear about your surgeon – even if you find your surgeon on a list or a vetting website (no matter how “reputable” it may seem) – it’s still imperative to vet the surgeon, look at patient reviews/lawsuits, and ask them questions (links below) about their beliefs, training, number of excisions, experience, industry ties, outcomes, complication rates, rates of reoperation/recurrence, ability to treat complex cases, etc. 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. 

Many people have heard of Nancy’s Nook and found it to be a helpful starting place to find an excision surgeon, but it’s important to know some important facts about Nancy’s Nook:

  • Remember that not all excision surgeons – even those on their list – have the same skill level, experience, or treatment philosophies. As their surgeon list grows, there’s also more surgeons on there with much lower or even no skills, which is why it’s vital not to take their list as a guarantee that the surgeon can fully and safely excise your endo.
  • The Nook list is NOT a list of top tier surgeons. If you use that list (or any other list of platform), it should be as a tool to gather names of potential surgeons, but you still need to do due diligence to make sure they have the appropriate skill level to treat your case. Some of the surgeons on that list may not have the skill level to excise your endo.
  • Although some patients post reviews of their surgeons on this Facebook group, there are criticisms that negative reviews are sometimes rejected and not posted by the moderators. You should also look up reviews for any surgeons via other platforms, like Google, Yelp, via your insurance provider, or any other places reviews of doctors are commonly listed in your country. In fact, you should do this for any doctor you find, no matter how you find them.

Worth repeating: just because your surgeon is on the Nancy’s Nook surgeon list (or any other list or vetting platform) doesn’t mean they have the skills and experience necessary to safely excise your endometriosis. Do not take any list or vetting platform at face value.

Nancy’s Nook isn’t the only starting place to try and find a surgeon. There are some amazing excision surgeons not listed on their list. Some excision surgeons do not have a social media platform, are not well known outside of their local network, or work at academic institutions and rely on referrals instead of advertising to find patients.

Resources

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.