Finding a true excision specialist is difficult for many reasons, including the paucity of skilled surgeons and the financial burden that may come with when you find one that is a good fit for you. So, the first step is to find the right surgeon and the second step is determining how to navigate the financial implications. It’s important not to do it the other way around because initial botched surgery and treatment can make it that much more difficult to find relief. Surgery is never easier the second or third time around.
There are a small handful of carefully monitored sites with very helpful information and a listing of qualified surgeons based mainly on patient outcomes feedback, none better than Nancy’s Nook. While there may be a few others that share patient experiences and some information, most are not well monitored or refereed, and thus, information and surgeon leads must be viewed with caution. Nancy Petersen has a vested personal interest in endometriosis and a deep understanding of the disease based on her work for many years with Dr. David Redwine, a pioneer in the field. Thus the information which is refereed by Nancy and her hand-picked editors forms a solid base. However, patient feedback, while important, is not the only way to determine who to pick as your surgeon.
The degree of a surgeon’s true technical skills is not easy to judge, especially if you are in the majority of not being medically trained yourself. Review of resumes and asking questions such as where did you go to school or train or how many cases do you do leaves a lot to be desired. It is simply not an accurate reflection, although knowing the surgeon’s background and pedigree can help. So, what else can be done to help find the right surgeon for you?
iCarebetter was created to help those in need find a specialist with a bit more objective information than patient recommendations alone. iCarebetter includes surgeons who are video-vetted by a peer review process. This means that acknowledged experts review surgical videos submitted by surgeons who wish to be vetted and are objectively either verified or not as possessing a high level of surgical capabilities. Of course, this does not reflect total patient management and bedside manner and more subjective skills. However, you want someone who can get the surgery properly done at the highest possible level for your needs. There is something to be said about a surgeon who is not afraid of showing other, perhaps better, surgeons what they’ve got, so to speak.
Additional related reading: Why was iCarebetter built?
Not too long ago, it used to be that when you showed up to your appointment and asked the surgeon what type of surgery they perform, you typically would hear ablation or excision. More recently, many more have adopted excision as the preferred method, or at least talk that way. But outcomes are variable among those receiving “excision surgery,” why? This article will help you better understand some of the key takeaways in finding the right surgeon for you. Some are simply not at a high enough skill level to help you, and others do not walk the talk.
Additional related reading: Laparoscopy: A Common Treatment for Endometriosis
Excision vs. Ablation
Excision is the removal of tissue diseased with endo, whereas ablation is the burning or fulguration of endo lesions and surrounding tissue and organs, usually using electrocautery. Research shows both may be effective for superficial endometriosis and not near delicate structures such as bowel and ureters; however, it is usually not possible to accurately determine which are superficial or deep infiltrating lesions based on looking at them.
While some patients do symptomatically improve with ablation surgery, clinically, it is recommended that excision is the preferred method because you really cannot know if a lesion invades deeper into the tissue, until you remove it. It is likely that those who have benefited from ablation surgery probably only had superficial lesions, and those who did not improve likely had more extensive endometriosis that was missed or not fully eradicated. While this is clinically accepted, we need more research to confirm this and show it truly is the preferred method. The problem with designing an accurate research study for this question is that the skill of surgeons participating in clinical trials is highly variable, so the results can be completely wrong because it almost entirely depends on surgical skill. More importantly, one size does not fit all, and everyone is different. Hence, a truly expert surgeon who can determine and act appropriately on findings and nuances is critical to your personal success.
Important terms and approaches
- Wide excision is a term you may hear which means that there is a wide margin of tissue that is removed to ensure that only healthy tissue remains. There is no consensus on this topic. Some surgeons will adopt wide excision, while others will remove the individual lesions, perhaps leaving micro-diseased tissue behind that is difficult to visualize during surgery. These areas may develop endometriosis in the future. In an expert’s hands, it is a judgment call as to how wide any given area of excision should be. There is a balance of too much and not enough, and this requires a high level of expertise to optimize benefits and minimize harm.
- Combination of excision and ablation. The other consideration when it comes to excision surgery is that some surgeons adopt a combination of excision and ablation. Some tissue will be excised for histological confirmation of the disease, but then many lesions may be ablated instead of excised. This generally does not make sense unless the surgeon simply does not believe that excision is better. The only exception is the ablation of tiny lesions on sensitive areas, such as the ovarian surface, where fertility preservation is a concern.
- Incomplete removal of lesions. Most general gynecologic surgeons will not be able to excise very many lesions and will handle them by fulguration or ablation. Some surgeons may be able to excise the majority of lesions but do not have extensive training to remove all lesions. Hopefully, your surgeon will advise you of their limitations prior to rather than after your incomplete surgery. However, in some cases, endometriosis is not suspected prior to surgery, and a general gynecologist, who is most often not trained in higher-level excision techniques, is caught by surprise. In that case it is better to biopsy, prove that endo exists, and refer to a specialist rather than poorly perform an incomplete surgery.
Complete excision, especially in a difficult case where there is a lot of disease or perhaps in case of distorted anatomy due to repeat surgery, will only occur with a surgeon who has been additionally trained not just in MIGS (minimally invasive gynecologic surgery) but in endo excision per se. The main surgeon has to be an expert because it is never possible to predict how much endo there is, even if imaging scans are negative. Beyond that, if the main surgeon is not trained to perform bowel or urologic surgery, then a well-coordinated team is mandatory. The problem is that this coordination is not too tightly organized in many centers. Ask questions about who can do what, if any required supporting surgeons are in surgery from the beginning or “on call” when needed. The latter does not often work out too well because of other commitments that might be conflicting.
What if I Cannot Afford to see an Excision Specialist?
It is true that many of the surgeons that specialize in excision surgery are out-of-network providers. However, in the past couple of years there have been more surgeons that do take insurance and hopefully, with legislative efforts and more education, this trend will continue to grow.
That being said, there is a good reason why many do not take insurance, and even if you have the option of an in-network provider, it may not be the right surgeon for you. Currently, there is no difference in the coding when undergoing laparoscopic or robotic surgery for endometriosis that discriminates between ablation versus excision. Ablating lesions takes far less skill, time and effort than excision does. Meaning, that an in-network surgeon who performs an ablation surgery that takes one hour will get paid the same as an in-network surgeon who does an excision surgery that takes four hours. Becoming a trained excision specialist costs money to the provider to undergo extra training to be able to perform these types of procedures, and even more training to become an expert in robotics.
Until our payment, insurance, and coding systems catch up to what is required, we will likely not see a dramatic shift in those who take insurance.
Aside from the financial difference, those who are in-network may not be able to spend the amount of time you may want during office visits to discuss the details of your surgery and your overall case as those who are out-of-network. Out-of-network doctors are usually able to provide longer visits to address your concerns in depth instead of the standard 15-20 minutes you typically get with your regular OBGYN. Some choose cost over this important treatment planning time, but there are many people who value a personalized approach which takes more time over the cost of the surgery. It is not just excision surgery that will get you to where you want to be, and this personalized treatment planning includes very important discussion about pre-operative and post-operative healing options.
Whatever you choose, you want to feel comfortable with your surgeon and find the right fit for you.
Other Considerations: Some Tips on Navigating the System
- Change your insurance provider. I know this is easier said than done, but for those with HMOs who are only allowed to stay within a small network, it may be worthwhile to talk to your employer, or partner (if applicable), or do some research on what other insurances are available to you. PPO plans include their list of in-network providers but also often provide some reimbursement for out-of-network providers, especially if their surgeons are not at the skill level that you need or are not within a reasonable geographic range. Open enrollment is typically once a year, or when you change jobs, or due to other qualifying life-changing events. So consider this as an option that may allow you to have more latitude and choice when planning for surgery.
- Work with your insurance company. This does not always work, and is time-consuming, but can have a big payoff at the end. There have been patients who have communicated and worked with their insurance companies when there is no available specialist around to cover your out-of-network provider services. While this has worked for some, be ready for a time commitment and likely many phone calls to get to the person who can help you.
- Ask the doctor you have selected. Some excision specialists have been helping patients with this insurance negotiation conundrum for many years. Because of that, some have teams that help you get an exception and lower your out of pocket costs tremendously.
- Adopt a new perspective. Lastly, this will not necessarily save you money, but looking at your surgery as an investment in your health may make it seem more doable. We often do not think twice about financing $30-$40k on a car or the thousands of dollars we spend on “stuff,” but we often hesitate when it comes to our health. Without health, nothing else matters. For many, excision surgery has been life-changing, and thinking of paying for your surgery as an investment in your health, may be the best thing for you. Again, while upfront costs may seem high, a concerted effort to find the right surgeon, advocate for yourself, and ideally find a surgeon’s office that can help you negotiate and advocate can lead to lower final out-of-pocket costs than you might think.
Whatever route you take, it needs to be the best route for you, with a full understanding of the pros and cons. Take your time when finding the right surgeon, and don’t rush into something you are not comfortable with.
Additional reading: 7 Ways to Prepare For First Endometriosis Specialist Appointment