Be sure to also check out “Understanding a Complex Disease” for more background on endometriosis.
There is perhaps nothing more frustrating and disappointing than feeling like your ‘best-hope-for-relief-surgery’ didn’t work. It’s a tough conversation, but let’s dive in and review some points of this multifaceted, complex issue that may occur – even following excision in the hands of a “specialist.”
To begin, we must first acknowledge that skill of the surgeon does matter and may constitute, in part, true failure. Disease may likely have been left behind for whatever various reasons – perhaps even intentionally in rare cases – and can continue to cause pain/symptoms…or, more likely – endometriosis was inadequately excised. In still other cases, it was actually not excised at all, but superficially removed. It is critically important to discuss with your surgeon what exactly was done, and why.
In some very select cases – though highly uncommon – it may also be more prudent (read: safer for the patient) for her surgeon to leave an area of disease intact because the risks far outweigh the benefits of removal in terms of potential surgical complications. Again, this is very uncommon, however, and generally speaking, all endometriosis can be safely and successfully excised from all areas. Nonetheless, outcome is often operator-dependent. Tool doesn’t matter – use of laser, scissors, etc. to excise is not as important as who is controlling that tool.
So what defines an ‘expert operator’? While there is no magic number of procedures or hours required to be considered highly proficient (though “10,000 hours” proponent Malcolm Gladwell may disagree), it is universally accepted that several hundred cases of successful surgery constitutes a certain level of expertise. For example, a New England Journal of Medicine editorial by a physician and a health policy analyst noted that ‘surgeons must do at least 150 procedures to become adept at using the robotic system.’ At the CEC, our surgeons have treated almost 5,000 patients through a combined 8,000+ procedures.
All told, a strong possibility still exists that so-called surgical ‘failure’ is not actually failure at all. Recurrence/persistence of actual endometriosis can occur, though at a low percentage rate, even after sharp and meticulous dissection in the most skilled of hands – yes, including ours. Interestingly, true recurrence may actually be higher in patients with lower stage disease (Koh 2012, et. al.) vs. advanced stages 3/4. It has long been noted in the literature as well that some disease in younger women is more ‘aggressive’ with a ‘higher recurrence rate’ and may even be a ‘different form of endometriosis altogether’ (Dovey 2010, et. al.). This, then, does not imply lack of meticulous skill attempted on the part of the surgeon (who is, first and foremost, human, after all!) – but rather, can be attributed to the complex, insidious nature of this disease.
It is also critical to recognize that refractory pain may not even be related to endometriosis at all. Secondary pathology in our own and similar center’s re-operative populations includes conditions ranging from adenomyosis, fibroids, non-endometrioma cysts or adhesions to interstitial cystitis, pudendal neuralgia, congenital defects, pelvic floor dysfunction, pelvic congestion syndrome, congenital defects previously undiscovered, vulvodynia, infection, unrelated bowel disease or other co-existing disorders that may contribute to the patient’s post-excision pain. All of these can cause continuing symptoms that are not related to the actual endometriosis. Each needs to be accurately diagnosed and treated accordingly. To a hammer, everything looks like a nail…but not everything is actually endometriosis-related symptomology. Thus, we must be cautious in automatically assuming the disease itself is the cause of continuing pain without being thorough in investigation, up to and including re-operative intervention to diagnose and treat any pathology if necessary/appropriate when non-invasive measures fail.
To that end, a multidisciplinary approach such as we practice at the CEC (incorporating a treatment team from gynecologic endoscopy, colorectal surgery, urology, PT in aftercare, nutritionists as appropriate, and various others specific to the individual’s own case) is key to ensuring effective treatment and maximum outcome, as well as reducing risks to the patient. If endometriosis is assumed – or confirmed at re-operation – it must be treated, along with any other pathology that may be found.
Next, as uncomfortable as it may be to talk about, it bears stating that realistic expectations are also imperative on part of both surgeon and patient alike. It is unreasonable to assume that years and years of prior, unchecked disease process and/or effects from multiple, previous failed interventions will always be 100% reversed and restored completely in one surgery for every patient (though indeed, quality surgery can and does drastically restore overall health, improve fertility and reduce/eliminate symptoms). Anyone who implies otherwise to their patients or is not honest about the systemic, far-reaching effects of endometriosis does not truly understand this disease – or the technical/increased degree of difficulty of the procedures required to adequately treat it. This is why early and effective intervention is so critical to the proper care of those with the disease – quality, timely intervention at symptom onset CAN prevent long-term complications and should be the goal of any treatment plan.
So what defines “cure”? Medically speaking, “cure” in relation to disease or disorder simply means “to relieve a person of symptoms” for the long-term. Excision is the gold standard for treating endometriosis and is effective at removing the disease in the majority of those who undergo the procedure. Most patients following excision find their pain is significantly decreased or even completely resolved, for the long term. By that definition, then, excision is sometimes referred to as ‘curative’ by others – in the sense that the disease can be eradicated. It should be noted, however, that not all pain is from endometriosis; that even removing all disease may not solve underlying issues in some cases; and that removal of endometriosis alone will not necessarily address other conditions which lend themselves to pain or symptoms.
Perhaps more important than universal use of the word ‘cure’ is addressing each patient’s concerns in a patient-centric, collaborative way to provide the best functional outcome for long-term relief and restoration of quality of life in that individual. We work with our patients to ensure we are addressing the ‘big picture’ of their individual situation and routinely engage in collaborative referrals to make sure a true multidisciplinary approach is used. We also strive every day to increase disease awareness, provide training and elevate endometriosis to a priority public platform in order to improve the time to diagnosis and effective, early – and proper – treatment for all those affected. Through timely intervention, individuals can be diagnosed and treated sooner, avoiding the vicious cycle of repeated drug therapies and ineffective surgeries that routinely characterize the disease. By educating society, legislators, insurers and the public, and by training tomorrow’s providers, we can empower patients and remove the ubiquitous barriers to care that continue to exist – and one day, make endometriosis a preventable disorder.
So-called permanent/universal “cure” is not as critical as what an *individual’s* outcome is on a PERSONAL level. Remember as well that it is not likely to see 1,000 positive responses about a potential treatment or experience on the Internet, but easily, 1,000 negative ones – you’re going to see those who are vocal because they are still experiencing symptoms. Part of being realistic, then, is not comparing your own situation to others, as endometriosis is a highly subjective experience though many commonalities exist. And of course – you must be proactive in seeking answers for your ongoing symptoms and working with your healthcare providers to find answers. After all, they can’t help you if they don’t know.
All things considered, the literature – and importantly, our own experiences across thousands of global patients, in every stage of disease, from nearly 50 countries – has long supported excision as the gold standard of surgical intervention for endometriosis; indeed, complete excision is a fertility-sparing procedure which prevents persistent disease in many cases and relieves multiple sequelae e.g. painful sex, pelvic pain, infertility, etc. In our specific population, only around 7-15% of the time can we document endometriosis after complete excision (Albee, Sinervo). How do we know that? Because we actively track our patients – some even nearly 25 years out – and maintain one of the largest databases on post-excision follow-up including reoperation of our patients both by us and others. Similar centers do the same and reflect, in general, comparable rates. The rate of recurrence post-vaporization, med suppression, and other superficial treatments on the other hand ranges between 40-100%, often in the very first year post-treatment. Likewise, probability of pain after hysterectomy hovers around 15% and risk of pain worsening ranges between 3%-5% on average (Vercellini et. al.). There is no question, then, that excision remains – as it has for decades – the optimal treatment for this disease.
Although there is no absolute guaranteed ‘cure’ per se, proper surgery in the hands of an advanced endoscopist who has dedicated his or her life to treating this disease can confer maximum relief. In our Center, we also employ a multidisciplinary approach to support all of our patient’s needs – and follow-up with all, whether it be 6 months or 25 years later. Other centers have similar data and outcomes. Through use of gold standard techniques, early intervention, active patient engagement and an honest and open approach, we can indeed maximize outcomes over this disease. Patient-centric care using the best tools in our armamentarium is critical and has helped – and will continue to help – many who struggle.
If pain persists or recurs even after excision with a sub-specialist in the disease, it’s important to tell your surgeon and afford them the opportunity and benefit of trying to continue to help you. They cannot treat what they do not know about, so be open to dialogue with your care provider. If they are not receptive to continuing care – find one who will help. Remember…you don’t have to settle for inadequate care, no matter what – other options always exist.
Ultimately, endometriosis facilitates a partnership between the patient and provider(s); educated decision-making should not only be encouraged, but required by all those treating patients. Above all else – never, ever ‘blame the patient,’ but work together to find the answers.
The CEC works so hard to educate not only patients of every age group, but also our fellow providers – school nurses/nursing professionals, other healthcare providers, surgeons, researchers, legislators, media, payors/insurers, and all those who have a hand in changing the landscape of this disease for the better. By working together to ensure accurate, authoritative information and training, we can find the answers to end this disease. What can we do to help YOU?