We think we have finally corrected the delay in diagnosis – but have we? We are now being taught by some thought leaders that endometriosis no longer requires a surgical diagnosis. We then proceed to “treat” the symptoms exactly how we have already been doing for years – with the same palliative approach. Is it really “solving” the diagnostic delay by merely giving symptoms a name without a confirmed diagnosis?
From medical school through residency and continuing on through practicing years, we are taught to practice “evidence-based medicine.” This is, or should be, the “gold standard” dictating care. As medical students and residents, we rely heavily on those teaching us from literature as well as their own experience. As we move on to practicing obstetrician-gynecologists, we in turn promote that which we have been taught. Building and managing a busy practice leaves precious little time to devote to in-depth study of the myriad of conditions our patients may face. For the most part, we fall back to what we were taught or move forward based on Practice Bulletins or consensus statements. It is evident that this approach may not be sufficient. Case in point: endometriosis.
Case Presentation: 23-year-old female presented for consultation regarding management of pelvic pain and pathologically confirmed endometriosis. During her adolescent years, significant dysmenorrhea impacted school attendance. She was initially told that this was ‘normal’ and ‘common’ and was encouraged to use non-steroidal anti-inflammatories (NSAIDS) to help. From 15-21, she had been moved from NSAIDS to OCPs, Progestins and GnRH agonists. During this time, dysmenorrhea continued and she also developed dyschezia. She was subsequently referred to gastroenterology and, after normal colonoscopy, was diagnosed with irritable bowel syndrome. During this time frame, endometriosis was diagnosed by laparoscopy with biopsy confirmation. During the procedure, some of the disease was superficially “burned off” and the remainder left untreated because it was “too dangerous” to treat.
At the age of 21 she presented to her gynecologist with continued dysmenorrhea, constant pelvic pain and dyschezia (pain with bowel movements). At the visit, her gynecologist noted, “the ACOG practice bulletin states that hysterectomy would be the definitive treatment for endometriosis.” Supported by ACOG practice bulletin #114, hysterectomy was performed as definitive treatment. Uterine pathology was normal. Yet, when I operated on her two years later, she had pathologically confirmed endometriosis of the pelvic peritoneum, rectovaginal septum and partial thickness endometriosis of the anterior rectal wall extending to the mucosa. This, unfortunately, is the “typical” endometriosis patient experience. Physicians rely on publications like the ACOG Practice Bulletins to guide us in standard of care treatments. In ‘Management of Endometriosis,’ we are taught to initiate NSAIDS use followed by OCPs or progestin therapy; hormones which are purely palliative, treating only symptoms and not disease. Tucked away in the body of the Bulletin is a brief statement, “there are no data to support the use of medical treatment to prevent progression of the disease” – which is completely correct. (1) Yet in stark contradiction to its own statement, ACOG later states in its Committee Opinion: Dysmenorrhea and Endometriosis in the Adolescent. (#760): “the goals of therapy include symptom relief, suppression of disease progression, and protection of fertility.” (2) This is a problem. This is the organization we are to rely on to guide our practice of standard of care medicine.
Further, hormones are stratified to second-tier and third-tier. If the initial medications fail to control symptoms, we are directed to move to “stronger hormones” and encourage our patients that “these will take care of your endometriosis” or “kill off the rest of it” when disease is left behind at the time of surgery. Yet multiple studies and meta-analyses have shown that there is no “tier effect” to treatment of endometriosis related pain. GnRH analogs are equivalent to OCPs, LNG-IUDs are equivalent to GnRH analogs, and none of them have been proven to do anything to actually treat the disease. (3-6) An early study also showed that the new GnRH antagonist is no better than Depomedroxyprogesterone. (7) Hence, as outlined in the case presentation above, patients are often advised to try hormone after equivalent hormone to help control their pain. It is imperative that we recognize individuals with endometriosis are not merely “pain patients.” They have relationships, hopes and dreams. We must see and consider the whole patient. It is my belief that this practice of “hormone shopping” is one of the greatest factors in the tragic delay in diagnosis that we continue to see with endometriosis.
Although we have admitted many of the failures that lead to delay in diagnosis, we have seen a shift away from treating symptoms and “treating” endometriosis. We think we have finally corrected the delay in diagnosis – but have we? We are now being taught by some thought leaders that endometriosis no longer requires a surgical diagnosis. We then proceed to “treat” the symptoms exactly how we have already been doing for years – with the same palliative approach. Is it really “solving” the diagnostic delay by merely giving symptoms a name without a confirmed diagnosis? This is an Emperor’s New Clothes approach to treatment and nothing more.
As we move our patients further through the “standard of care,” many are eventually offered “definitive treatment” in the form of hysterectomy. Definitive: adj. Done or reached decisively and with authority. In the above-mentioned Practice Bulletin, ACOG states, “hysterectomy with bilateral salpingo-oophorectomy often is regarded as definitive therapy for the treatment of endometriosis.” To wit: without any direct scientific or evidence-based medicine, we are taught that removing a healthy uterus will be definitive or complete treatment for endometriosis. The use of the word “definitive” is misleading and damaging. We then counsel patients that removing a normal uterus will magically make all the extra-uterine disease disappear, die off, or go away. This is what is set forth and practiced as the “standard” of care.
When the symptoms continue following the ‘definitive treatment’ of endometriosis, we then try to convince patients that their pain cannot be related to endometriosis because hysterectomy has been performed. Patients end up frustrated, in pain, with ruined relationships, lost jobs and thinking they are crazy. They are pushed through the gauntlet of pain management, mental health consults and addiction medicine even in cases where untreated endometriosis is documented. Many of these patients seek further surgical intervention and have these requests denied by insurers because they have already had “definitive hysterectomy.” This must stop.
In the many areas of care that fall under our specialty, we readily admit when advanced training and expertise is helpful i.e. high-risk pregnancy, advanced reproductive medicine, pelvic support, gynecologic oncology. Why then do we blind ourselves to advanced or complex endometriosis? Endometriosis patients are not ‘one size fits all.’ As a non-academic gynecologist specializing in excision of complex endometriosis, I fully admit that excision is not perfect. However, a full excision approach to endometriosis has helped hundreds of thousands of patients who have been failed by the current “standard of care”. It is currently the only treatment proven to actually remove or “get rid of” the disease. It is the only treatment that focuses on more than “just a pain patient” or “just a fertility” patient. It considers the whole patient. It is a treatment that focuses on the disease and not just symptoms. It can no longer be acceptable to delay diagnosis while we shop through equivalent hormones or search for explanations other than the obvious while potentially allowing disease to become destructive. Delay in diagnosis that results in destructive endometriosis, strained relationships and ruined fertility dreams is unacceptable and puts our patients and providers both at risk. Truly informed consent dictates that excision of endometriosis by an advanced provider or multi-specialty team must be included in treatment options offered to and considered by patients – even when it lies beyond our personal skill set. Especially before healthy reproductive organs are needlessly removed from a 21-year old.
1) Practice Bulletin No. 114; Management of Endometriosis, American College of Obstetrics and Gynecology, 2018
2) Committee on Adolescent Healthcare, ACOG Committee Opinion No. 760; Dysmenorrhea and Endometriosis in the Adolescent. American College of Obstetrics and Gynecology, 2018
3) Vercellini, et al; A Gonadotropin-releasing Hormone Agonist Versus a Low-Dose Oral Contraceptive for Pelvic Pain Associated with Endometriosis. Fertil Steril, 1993;60:75-79
4) Bayoglu Tekin, et al; Postoperative Medical Treatment of Chronic Pelvic Pain Related to Severe Endometriosis: LNG-Releasing Intrauterine System Versus Gonadotropin-Releasing Hormone Analogue. Fertil Steril, 2011;2011:95(2):492-496
5) Guzide D, et al; Randomized Trial Leuprolide Versus Cntinuous Oral Contraceptive Pill in the Treatment of Endometriosis Associated Pelvic Pain. Fertil Steril, 2011;95(5):1568-1573
6) Petta CA, et al; Randomized Clinical Trial of a LNG-IUD and Depot GnRH Analogue for Treatment of Chronic Pelvic Pain in Women with Endometriosis. Hum Reprod. 2005;20:193-198
7) Carr B, et al; Elagolix, an Oral GnRH Antagonist, Versus Subcutaneous Depot Medroxyprogesterone Acetate for the Treatment of Endometriosis: Effects on Bone Mineral Density. Reprod Sci, 2014 Nov; 21(11):1341-1351