So you’ve finally reached a suggestive endometriosis diagnosis after what has likely been a harrowing journey, and there are some decisions to be made. Whether the diagnosis is met with relief at finally having answers, surprise, fear, dread, or a mixture of all the above, it can feel overwhelming. Choosing the right course of action for you can be a daunting task, particularly when finding accessible, accurate treatment information for endometriosis is a feat in itself.
While some patients decide to manage their suspected endo with non-surgical options such as birth control, hormonal devices and therapies, or lifestyle changes, the only definitive means of diagnosis is through laparoscopic surgery and tissue biopsy. In this minimally invasive surgery, endometrial tissue should be excised, or cut out, which is the gold standard treatment for endometriosis. Excision allows for complete removal of endometriosis lesions, delaying or in some cases preventing recurrence of the disease and often yielding positive results in symptom improvement. This course of treatment can also prevent the endometriosis from spreading and causing greater damage. Excision surgery should not be confused with ablation surgery, where a surgeon uses a laser to burn off the lesion, leaving the endometriosis root.
If excision surgery is the right choice for you, the next question is where to have it, and with whom. Yet for many, the choice is largely made for them due to insurance restraints, financial burdens around surgical costs or time away from work, inability to travel, and the many other barriers that so often make healthcare access inequitable. It is a privilege to have any decision-making capacities around seeking excision surgery; scores of patients are denied such care, and this profound inaccessibility remains a core issue at the heart of endometriosis care. While large-scale change in endometriosis treatment access is necessary, this article’s discussion of key factors to consider when seeking surgery now is intended to help you navigate the many barriers and choices ahead to determine what options are available to you.
The Long Wait for Surgery
An endo patient I spoke with got on a surgeon’s list at her nearby hospital system for excision surgery back in March 2022. She was originally told it would be a three to four month wait—a difficult time frame due to her intense pain, but doable. Just this week she found out that operating room staffing shortages were causing delays, and that the four month wait had jumped to an 11 month wait.
“I worked up the courage to call and they said they booked up July and that there’s 25 patients in front of me, so they are looking at February for the laparoscopy,” she relayed. Because most private practices don’t accept her insurance, looking to other, faster options at a specialty clinic is likely off the table. “I’m a bit stuck,” she concluded.
Yet another endo patient at the same hospital system shared that while she initially got a relatively-soon surgery date (just about two months after her intake appointment), the surgery was canceled at the last minute due to the surgeon being away and subsequently having to take care of pregnant patients first before getting to the endo patients awaiting excision. Now, over a month since her original surgery date, she is still waiting for a new date, all while suffering from endo symptoms and a large cyst.
Such is the agonizing waiting game so many endo patients endure. One of the very first factors that may influence the choice of surgeon is just how long the wait might be. After getting through what was likely a long diagnostic delay—the average delay being 7 to 10 years for endometriosis patients—the added delay of waiting for excision surgery can be frustrating at best, if not downright dangerous for some patients. With still too few excision surgeons to meet the need, many patients are left waiting for months before receiving the surgical help they need. This is often particularly the case for excision surgeries occurring within larger hospital systems by OB-GYNs, where hospital and surgical space is frequently limited and the surgeons are splitting time between obstetrics and gynecologic surgeries. One Canadian excision surgeon who was asked about the abysmal wait times for endo patients pointed to factors of poor remuneration for gynecological surgery, low research funding, and far too few surgeons specializing in endometriosis, which he estimated at only around one percent of doctors in Canada.
The gynecologist who first diagnosed my then-suspected endometriosis, Dr. Luke Chatburn, echoed a similar sentiment, relaying that such surgeries generate little revenue for hospitals or surgeons. “Insurance companies treat excision procedures the same as 15-minute untrained ablation procedures, so it is not economical for providers to perform excisions. Why do a 7-hour surgery when you earn twice as much putting in an IUD in a clinic?” Because of this unfavorable system, few surgeons want to train for or engage in such complex surgeries, and many who do then decide to charge patients high out-of-pocket prices, which according to Chatburn typically lands between $6k-20k. This means that with too few practitioners and frequent monetary restraints, the backlog of patients awaiting financially accessible excision surgery piles up.
The story is similar across the pond in the UK. One BBC report in 2020 showed that in Northern Ireland, the average wait time for laparoscopy for endometriosis patients in the UK was 69 weeks, with a maximum of 311 weeks (the report did not specify excision, though as excision is more specialized, the wait time is likely even longer). As these surgeries are largely considered elective procedures, the widespread surgical delays due to the COVID-19 pandemic have further heightened this challenge for endo patients.
If seeking help from a specialized gynecologic surgical clinic is a feasible option for you, you may be able to receive excision surgery sooner than if you have to wait for a surgeon with limited hospital space. With their own surgical centers and/or separation from a larger hospital system, as well as focusing solely on excision and similar gynecologic surgeries, the turnaround time for surgery can be faster (though there still might be a significant waiting period and high demand). However, some clinics require imaging and other intake documentation that could further elongate the wait— it’s therefore beneficial to review the intake requirements for each provider and begin that process early. It is also important to remember that each place might be different and to ask directly about their timeline for surgery.
When I decided to undergo excision, I wanted to have it done by Dr. Chatburn, but the wait time for surgery would have been close to a year long. With the continued escalation of my symptoms and intense pain, I decided to seek help elsewhere in the hopes of having surgery sooner. I was fortunate to have the mobility and resources to travel to a specialty clinic completely devoted to gynecologic surgeries, where I was able to have excision surgery in their surgical center just a month and a half following my first appointment. For me, finding out as soon as possible how pervasive my endometriosis was (and confirming once and for all that I in fact had it), assessing what damage it had caused, and removing it before it progressed further were crucial motivators on top of the driving hope for quicker relief.
“Postcode Lottery” & Ability to Travel For Surgery
One UK-based endometriosis advocacy group calls out the “postcode lottery” of specialist endometriosis care; that is, the issue of an endo patient’s ability to access specialized treatment sadly depends heavily on where they are located. Along these lines, evaluating your ability to travel to undergo excision surgery can be a key factor in deciding where to go. This includes considering the distance, accommodations needed, support people who could accompany you, and even things like parking and general comfort in different locations. For my surgery, I drove five hours to the clinic and stayed in the area for the following week, allowing myself to just rest without the strain of travel right away, and having a clean, comfortable place was important. When planning to travel for surgery, be sure to ask the clinic about their pre and post- operative travel guidelines, as well as to consider what might be both feasible and best for you personally.
Costs & Insurance Coverage
Of course, one of the largest barriers to accessing excision surgery is limits to insurance coverage and high costs. Many specialists do not take certain insurances or vice versa, forcing some patients to travel far for affordable care, endure long waits for surgery, pay immense out-of-pocket costs, or even simply not receive treatment. Asking upfront about insurance coverage is key when finding surgical care, and advocating directly for coverage from your insurance company can also be effective. Nancy’s Nook, which offers a thorough guide for dealing with insurance, recommends highlighting the necessity of highly skilled excision surgery when pushing for coverage, as many insurance companies do not differentiate between ablation and excision or assume that a surgeon trained in ablation can perform excision (which is often not the case). With such rampant lack of knowledge surrounding endometriosis and its treatment, advocating for yourself and what you need is essential.
The infuriating truth of endometriosis treatment is the deep inequity and exclusivity of effective healthcare. As Dr. Chatburn lamented, “endo surgery, by and large, is limited to well-heeled patients.” Until insurance companies amend their policies for excision surgeries and care becomes more accessible and widespread, patients will have to continue advocating hard for their needs and drawing on support networks to navigate the best options available.
Choosing a Surgeon
Finally, the all-important question: who should perform the surgery? With so much misunderstanding of endometriosis even amongst medical professionals, it can feel particularly difficult to tease out who is best to go to for treatment. Regardless of whether the surgeon is in a private specialty clinic or a practicing OB-GYN in a hospital system, taking a careful look at the individual to fully assess their qualifications, surgical methods and understanding of endometriosis is central. Nancy’s Nook offers another comprehensive guide to choosing a surgeon with very thorough, helpful guidance and recommendations on important things to know about your potential surgeon.
Perhaps the biggest piece of advice for choosing an excision surgeon, and indeed for navigating the surgery process in general, is to not be afraid of asking questions. This is your body, your health, and your unique circumstance, and you deserve to have all the information you need at your disposal. Figuring out the options that are available to you and deciding what is best is not easy, and there is an incredible need for effective endometriosis care that is widespread, accessible, and equitable. Until then, sharing knowledge and gathering helpful resources can help more patients dictate their endometriosis care and find the treatments they need.
