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Questions to Ask Your Surgeon

Training, experience, and skill levels vary drastically among excision surgeons. If we decide to have excision, it’s important to operate with the best surgeon that we can, but the reality is that across the world, lack of access to high volume excision surgeons is a huge problem. This is why I tried to be more nuanced in the answers to the questions below, pointing out some 🚩obvious red flags, ✅ green flags, and ⚠️yellow cautionary flags.

I personally wouldn’t go to any surgeons with 🚩red flags, because surgery is a huge emotional, financial, and physical undertaking, and my own goals were to try to improve my quality of life as well as lessen risk of repeat surgeries or surgical complications.

Obviously, it would be ideal to go to a surgeon with all ✅ green flags. Surgical outcomes tend to improve and complication rates go down with the more skill and experience a surgeon has – although even with the best surgeons, no outcome is guaranteed. All surgeons have patients with endometriosis persistence/recurrence. Complications can also happen, even in the most expert hands.

However, many of us cannot go to excision surgeons with all green flags, and I want to be cognizant of that fact. Some people may wait to operate until they can go with a high volume surgeon, but others, depending on their individual situation, may not be able to wait or may feel that their chance to access a surgeon with all green flags in the near future is impossible. Therefore, they will try to find the most experienced surgeon they have access to, understanding the surgeon’s limitations. Hence the ⚠️cautionary flags. Surgeons with cautionary flags may have some skills/experience but often are still at the beginning of their learning in excision surgery.

In my own case, my own surgeon didn’t have any red flags, but he was not a top tier, high volume excision surgeon either. He had a mix of ✅green flags and ⚠️cautionary flags. He didn’t have the skill level to remove all my endometriosis and left some endometriosis behind, but he still was able to excise about 95% of my endometriosis and didn’t compromise my organ function or cause me complications. He turned out to be a decent choice for my individual endometriosis case but I don’t think he would be for all endometriosis cases.

Here’s a list of questions I would ask any surgeon I was thinking of operating with and my criteria for green, red and cautionary flags. This isn’t an exhaustive list nor should you choose your surgeon solely based on my questions. Check out my page How to Find an Excision Surgeon and the resources I’ve provided there as well. Choosing who to trust your body with during your surgery is a big decision, and I recommend reading as much as you can about choosing a surgeon before doing so.

What kind of training do they have in endometriosis?

✅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.

How many excision surgeries do they do per year?

✅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.

⚠️On the low end, this is often 100+ excision surgeries per year with 5+ years experience. 

Do they do obstetrics or cancer cases?

✅Ideally, the surgeon’s caseload would be focused on endometriosis excision. This is because doctors who do obstetrics and other gynecology cases 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.

⚠️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.

What surgical techniques do they use? Do they do excision or ablation, or both?

✅High volume excision surgeons typically only do excision, without doing any ablation. 

👉Even if your surgeon calls themselves an excision surgeon, it’s important to clarify their technique because some do:

  • 🚩ablation instead of excision
  • 🚩excision of an endometrioma and ablation of the rest of your endo
  • ⚠️majority excision but they may ablate small areas of endometriosis

Will they do laparoscopy or laparotomy? 

✅Laparoscopy (done with small incisions and a camera) is less invasive than 🚩laparotomy (open surgery with a large incision), typically with less complications and faster recovery time.

👉Ask them how often they need to convert from laparoscopy to laparotomy. Generally, this should be rare.

How do they know what to excise? What colors/appearance does endometriosis have? 

Many gynecologists learn that endometriosis is just “black powder burns”. However, this isn’t true: It can be clear, red, yellow, white, and other colors. It can be inside peritoneal pockets, or in tissue atypical in appearance. 

✅Surgeons should be able to recognize endometriosis in all of its appearances.

Do they ever leave endometriosis behind instead of excising it?

✅Generally, no. 

🚩Remember: Lupron, Zoladex, and medications cannot “clean up” or dry up endometriosis. Surgeons shouldn’t leave endometriosis behind with the plan to then medically “remove” it.

👉Endometriosis in extrapelvic locations can be safely excised. Although some surgeons say that endometriosis on the intestines, bladder, diaphragm, and other locations can’t be moved, in actuality what is too risky for one surgeon likely isn’t another with a higher skill level.

What do they do if they come across endometriosis they can’t safely excise? 

✅Ideally, they would be able to excise all endometriosis they come across. 

⚠️However, depending on the surgeon’s skills, they may not be able to excise from the diaphragm, lungs, bowel, etc. If 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. Ideally, they will take pictures of the endometriosis they couldn’t excise so you can show those pictures to your next surgeon.

🚩 If you/they suspect you have endometriosis in locations they typically can’t excise, this doctor is likely not a good fit for you. 

Will they have a multidisciplinary team available for endometriosis on the bowels, bladder, diaphragm, etc? 

✅Depending on which organs are involved, surgeons often work with additional surgeons (colorectal surgeon, urological, general, thoracic surgeon) to excise endo. These surgeons should be familiar with endometriosis as well, and able to excise the disease. 

Will they be performing the surgery themselves, or will their Fellow/Student perform it? 

✅The surgeons typically do the operations. 

⚠️If a Fellow/Student is going to participate in the operation, it should be under direct supervision and ideally the surgeon should ask your permission prior to allowing this. If you are not comfortable having a Fellow/Student operate, say so!

What kind of experience do they have with nerve-sparing surgery? 

What kind of training have they done? 

Do they have patients with pelvic nerve injuries? As a general rule, ✅this should be rare.

What are their ureter complications rates? 

How often do they have patients with ureter injuries? As a general rule, ✅this should be rare.

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 kind of surgical pre-planning do they do?

✅Most excision surgeons will do an ultrasound and possibly an MRI so they have a better idea of your endometriosis and what they will encounter when they operate.

👉Remember that a colonoscopy doesn’t typically detect bowel endometriosis since 90-95% of bowel endometriosis doesn’t go through the 4 layers of the bowel.

Will they take pictures and/or video during the surgery to give to you?

✅Not all surgeons will take video, but they should at least be able to provide you with pictures.

Will they send all tissue that they excise to pathology?

✅Yes. This will be to confirm if the tissue is endometriosis or not.

Will your surgery be organ sparing? Do they normally do a hysterectomy (uterus removal) or oophorectomy (ovarian removal)?

The goal should be to maintain healthy organ function. 

👉Remember: a hysterectomy is not a definitive treatment for endometriosis. However, in some instances, a hysterectomy may help people if their pain is actually because of problems originating in their uterus, such as fibroids or adenomyosis. 

Removing both ovaries earlier than natural menopause can result in an increased risk of diminished bone density, dementia, and cardiovascular disease. Even removing one ovary can result in hormonal problems or the need for HRT afterwards. 

✅The role of a hysterectomy and/or oophorectomy in a patient’s treatment is on a case-by-case basis

🚩Having endometriosis does not mean that one automatically should remove their uterus and/or ovaries (even if endometriomas are on the ovaries). 

What techniques do they use to excise bowel endometriosis and how do they decide which one to use?

Techniques include shaving, discoid resection, and bowel resection. Which one they do depends on the location and depth of the bowel endometriosis. 

👉There is a logic behind the surgeon choosing which technique to use.

Do they use hormonal medications before surgery?

👉Hormone suppression before surgery may make it harder to see some endometriosis because it can temporarily change the appearance of endometriosis by reducing inflammation or allowing the bleeding in the surrounding tissue to heal. If lesions are too subtle to see during surgery, then they may not be removed by the surgeon.

Some surgeons actually prefer the patient to be off all hormonal suppression prior to surgery. Some may even prescribe estrogen prior to surgery if the patient was on hormonal suppression.

Do they use hormonal medications after surgery?

✅Using hormonal medications post surgery should be the patient’s choice, based on their individual situation.  

👉Some studies done on endometriomas suggest that taking hormones post operatively can sometimes help to slow potential endometrioma recurrence for some people. 

In terms of symptoms recurrence post surgery, there are various studies which show that hormonal suppression may help with additional pain relief post excision, or may extend the time a patient is pain free post excision.

🚩Lupron and medications cannot “clean up” or dry up endometriosis. Surgeons shouldn’t leave endometriosis behind with the plan to then medically “remove” it.

What beliefs do surgeons have about the disease?

👉Not all surgeons have the same beliefs about the disease. Some surgeons still believe that endometriosis is caused by retrograde menstruation (it’s impossible for this to be the main cause of endo) or that endometriosis is the endometrium (it’s not). Surgeon’s beliefs may or may not influence how they provide treatment. 

🚩Surgeons shouldn’t leave endometriosis behind because “it’s from retrograde menstruation and always comes back so why remove it all?” (not true – it doesn’t always come back). 

🚩Surgeons shouldn’t say that you need a hysterectomy to “remove the source of endometriosis” (a hysterectomy isn’t a definitive treatment for endo).

Remember: 

  • Your surgeon should consistently be having good surgical outcomes with low complication rates. You are trying to verify that through asking them questions like these, online reviews, and through any info you can find online about your surgeon.

  • Not all surgeons are on social media.

  • Not all surgeons are on a vetting platform or online list. (And even if they are, you STILL need to ask them questions to see their training and expertise. Surgeons’ skill levels vary and being on a list or platform does NOT guarantee a surgeon’s skill level.)

  • In addition to asking your surgeon questions, you can use Google, social media, endometriosis FB groups, Reddit, etc to see patient reviews/lawsuits, and gather information.

  • Some surgeons recommend GnRh drugs to their patients. In the US, you can look online at Open Payments to see if/what payments were made to them by drug companies. Surgeons have their own views on hormonal medications, but they shouldn’t leave behind endometriosis because they believe that GnRh drugs will “clean up” residual disease (it won’t).

  • The reviews on social media and medical pages should be regarding the patient’s well-being, their experience in surgery and their recovery. Punctuality and kindness are important but if they don’t have reviews that speak beyond that, it’s potentially a red flag.