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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?
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 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 – 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 endometriosis 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 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 common 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: often 100+ excision surgeries per year with 5+ years experience. However, the top excision surgeries are often doing 6-10 cases per week! 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. 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. And among the cases they do, these should also include complex cases.
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.
It is not enough to have done a MIGS (minimally invasive gynecologic surgery) fellowship. 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. In the hands of an experienced surgeon, the chance of having “microscopic” endometriosis that wasn’t removed is much lower than in the hands of a less experienced surgeon. 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 knowledgable 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 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 preformed.
- 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.
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 do excision and ablation. For example, some of the less expert surgeons excise an endometrioma or deep endometriosis, but ablate superficial endometriosis. (All areas of endometriosis should be excised.)
- 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.
If so, then your doctor is not an expert. Some common red flags are doctors who say:
- “I’ll only operate if you do Lupron/Zoladex/another hormone for X months first”.
- “I’ll only operate if you try all other options available and they don’t work for you.”
- 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. At the same time, you don’t want a surgeon operating on you the lacks the necessary skills, so these could be red flags to know they may not be an expert.
That isn’t to say that they don’t discuss other options with you – that is part of informed consent to explain all the different treatment and management options and work with you to make the best choice for you. First line treatments are typically pain medications and birth controls. But one thing is discussing options, and another is telling you that your surgery is conditional on X factor, like you trying Zoladex first – especially if you’ve already tried multiple hormones to manage endometriosis symptoms.
Unfortunately, this is quite common in some countries (mostly outside of the US). As a patient, it can be hard to navigate the surgical gatekeeping, especially if there’s very few excision surgeons in your country.
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.
Unfortunately, some surgeons who call themselves excision surgeons do ablation instead of excision, or a combination of ablation and excision. 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. 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’s may be better to have no surgery than to have surgery with an inexperienced/non-expert endometriosis surgeon.
Across the world, lack of access to high quality excision surgeons is a huge problem. Oftentimes, the only surgeon we have access to is a non-expert endometriosis surgeon. 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.
While it’s up to you as an individual, many people find it’s better to wait to operate* until they find a skilled excision surgeon. Many patients have had an ablation which didn’t provide long lasting relief or an incomplete excision which resulted in them needing an expert excision surgery anyways. For some people, their pain worsened 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. Additionally, it’s important to know that 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’s never a permanent one!) Surgical complication rates go down with the more skill and experience a surgeon has.
*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.
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.
Where to find a surgeon
Many people have found Nancy’s Nook (link below) a helpful starting place to find an excision surgeon, but 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, 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. Additionally, some patients post reviews of their surgeons on this Facebook group, but there are criticisms that negative reviews are sometimes rejected and not posted by the moderators.
Likewise, having surgery with an excision surgeon that you found and vetted that isn’t on the NN list (or any other list or vetting system – no matter how “reputable” it may seem) doesn’t mean you are guaranteed to have a bad outcome. Some great 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.
No matter where you hear about your surgeon – be it on the Nancy’s Nook list or not – 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. 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.
- Analogy for the Hierarchy of Endometriosis Surgeons – IG post from EndoGirlsBlog to help understand the range of skills and experience different surgeons can have for endometriosis.
- Nancy’s Nook Facebook Group – This private Facebook group has a list of patient-to-patient recommended excision surgeons worldwide in the Files section. Remember: The Nook list is NOT a list of top tier surgeons. Skill level and experience vary drastically among the surgeons listed. This list is just a starting place – even if you find a surgeon here, it’s still vital to vet the surgeon to make sure they are qualified to safely and completely excise endometriosis. This is not a list of surgeons to take at face value and just assume that they all have the necessary skills – they don’t. Additionally, not all surgeon reviews that patients write are actually approved and posted by the moderators. This Facebook group is also a good source to learn information about 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.
- Questions to Ask Your Surgeon During the Post-Op Appointment – Some questions I put together to ask after your surgery.
- 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.