Petition Urges Ob-Gyn Physicians’ Group to Update Endometriosis Treatment Standards

Petition Urges Ob-Gyn Physicians’ Group to Update Endometriosis Treatment Standards

An endometriosis patient advocate has written a petition urging the American Congress of Obstetricians and Gynecologists (ACOG) to update treatment standards for endometriosis — an area which the petition argues is neglected by the professional organization.

The petition, signed by thousands of women, urges the ACOG to improve physicians’ knowledge and care standards in order to shorten the time it takes to diagnose endometriosis, which according to the Endometriosis Foundation of America averages 10 years. It also asks the ACOG, based in Washington, D.C., to introduce coding that makes reimbursements for extensive surgery more fair.

ACOG must work with medical experts and patients to bring about the necessary changes in its policy, the petition says.

“Educated patients, dedicated advocates, and expert endometriosis practitioners strongly believe that ACOG is not acting as a leader in endometriosis healthcare,” argues the petition, written by Casey Berna. “The lack of institutional leadership has caused suffering for patients in the form of delays in diagnosis and poor access to effectual care.”

Dr. Barbara Levy, ACOG’s vice president for health policy, released a statement in response to a request by Endometriosis News. She did not address the petition directly, but did respond to several of its points.

Her organization, Levy said, “considers the chronic pain and infertility associated with endometriosis a significant health problem for many,” and is aware of the importance of “early and accurate diagnosis.” It “encourages ob-gyns to increase their own understanding about the disease and raise awareness about the condition with patients.”

But, she noted, ACOG cannot on its own establish criteria for the coding of medical and surgical procedures; that’s an “official process” done in conjunction with major medical associations, and requiring publication of five or more peer-reviewed studies and expert panel review. And it’s a process, she notes, that ACOG “does not direct.”

Rather, the group can and does issue recommendations, Levy said. These begin “with conservative nonsurgical treatment approaches” for pain associated with endometriosis, and support “more invasive procedures” if evidence exists of “localized specific pain triggers” contributing to symptoms.

A patient advocate, Berna has also suffered the consequences of a delayed endometriosis diagnosis and improper treatment, according to an article by Erin Migdol in The Mighty.

One of the key issues in delayed diagnoses is a lack of knowledge among physicians, the petition claimed, citing an article on the ACOG website by its current president, Dr. Tom Gellhaus. In it, Gellhaus notes that 63 percent of general practitioners are not comfortable in diagnosing and treating endometriosis, and up to 50 percent are unfamiliar with the three main symptoms of the disease.

But along with better education for physicians, patients need the resources to be referred to experts who can surgically remove endometriosis, Migdol pointed out in the article.

Excision surgery — considered the gold standard for endometriosis treatment — has the best chance of removing as many endometriosis lesions as possible, and it can preserve fertility. Current guidelines, however, don’t recognize the specific techniques used during extensive excision surgery. This can cause patients to be billed for out-of-network services, making treatment potentially inaccessible to them.

And surgeons taking on the task of removing endometriosis from several organs — a procedure that usually takes hours — are compensated in the same way as colleagues who perform a simple 40-minute ablation procedure, according to a petition response posted by an endometriosis specialist, Dr. Jeff Arrington of Utah’s EndoWest clinic.

Arrington added that leaders in endometriosis surgery have long pointed out this “improper and unjust” situation to ACOG. Levy responded directly to this, noting those surgeons “promoting radical excision of endometriosis for alleviation of chronic pelvic pain have not produced the requested literature to support their coding requests.”

Many comments posted by endometriosis patients gave voice to their frustrations. At the time this article was published, the petition had been signed by more than 3,100 people.

7 comments

  1. As a patient, I can submit the proper literature (or medical images if needed) to support coding request. Endometriosis is a devastating, systemic illness that can result in lung collapse and is currently categorized as a pelvic pain illness. Top level medical organizations need to shorten their learning curve and catch up to patient knowledge.

    We presented this information at the World Congress on Endometriosis in May representing 176 Million Women. 68% Misdiagnosed.
    — What we would like Doctors to Know about Endometriosis
    http://www.endostats.com/dr-notes.html

  2. The interesting thing is, is that there are many peer reviewed journal articles combined from gynecology, colorectal surgery and urology that do support radical excision of endometriosis. Yes there is only a small number produced by comprehensive centers regarding full excision, but the individual procedures performed by specialty centers as a “one stop shop” have well documented benefit.

    Also, the same standard of peer reviewed journal articles is not being clearly applied to the medical therapies Dr. Levy speaks of. Medical therapies are only meant to control pain and symptoms of endometriosis. By ACOGs own recognition, there is no evidence that hormone therapies prevent progression of endometriosis. There is a massive knowledge and practice gap between that statement and what is practiced. Some patients find pain benefit with hormone therapies an many do not. Instead of proceding with surgery for diagnosis and removal patients are switched from medicine to medicine when head to head studies show that they are all equivalent.

    A second point on the push for multiple trials and years of hormone therapy. If hormones do not prevent progression and about 10% of endometriosis patients have deeply invasive and destructive endometriosis, who are we as doctors to choose to put a patient’s fertility, personal relationships and health at risk. Currently there is no test to tell which endometriosis is destructive and which isn’t. Until that time, there may be an increased benefit of at least an initial surgical evaluation to document disease before the mid-twenties. Yes a simple diagnostic surgery is a surgery with inherent risks. Early documentation could channel patients with advanced disease to earlier treatment before in can steal dreams.

    Delaying surgery for years of failed pain control with endometriosis puts patients at risk for infertility, opioid dependency, destroyed personal relationships and depression. I’m sorry, but there is risk in delaying diagnosis as well!

  3. One argument I have heard and potentially agree with in coding changes, is that appropriate codes already exist. If we forget about the fact that laparoscopic surgery codes are over 20 years behind what even general gynecologists practice, there are many codes that can be useful in endometriosis surgery.

    There ar codes for endometriosis removal, excision or bowel masses, release of scarring around ureters and nerves, removal of deep pelvic or retroperitoneal masses, release of adhesions, etc. some of these codes are specific and others use a generic “unlisted” code. Still others are only available as open (big incision) surgery. Even with these codes, the guidelines set forth allow insurance companies to deny payment for all the extra work and risk taken to adequately and appropriately remove advanced endometriosis. Regardless of where the endometriosis is found or what pelvic organs it involves, current coding rules allow insurers to “lump” everything together into the simple code used for early or incomplete treatment that takes 15-45 minutes.

    With personal experience I assure that it is impossible to dedicate a sugical private practice to adequately treating advanced endometriosis and be financially viable. Without increased reimbursement for a 2-5 hour surgery compared to a 15-45 minute one, I cannot operate enough to pay the cost of a practice.

    The only options are to not contract with insurances, limit the number of endometriosis patients, or spend the same amount t of time per operative session that a regular gynecologist would. The latter would split a 4 hour surgery into 8 operative sessions and, to me, is clearly unethical.

  4. Wendy Bingham, DPT says:

    Endometriosis is a disease that has been under acknowledged, under researched and under estimated in its destructive potential and systemic nature. It’s time medical schools and professional enrichment education courses, the institutes/organizations which provide them, acknowledge that the disease is not limited to a Gyn concern, confined to the pelvis, and the result of a ‘defective’ tendency to regurgitate menstrual blood through the Fallopian tubes.

    The ‘Endometriosis Fact Sheet’ does not acknowledge the presence of many other signs and symptoms women may present with that are ‘atypical’. Omission of ‘atypical’ and ‘extra-pelvic’ disease is a concern. It is acknowledged that:

    “when other typical pain and menstrual symptoms are absent….symptoms are often under-reported by patients unless specifically questioned. Patient education regarding symptoms of endometriosis especially nonspecific symptoms is important to estimate the true prevalence and strength of association with endometriosis” (SL Uy, RD Rajkumaralal, H Rajesh Atypical and nonspecific symptom endometriosis: a prospective study. Poster Presentation WCE 2017, Vancouver B.C. Canada).

    Diagnostic Delays will continue until ALL providers (across healthcare spectrum) are educated to identify systemic symptoms. Dysmennorhea may be the primary complaint, but there are a vast number who present differently. Many of us are excluded from the ‘Endometriosis Fact Sheet’. All providers, across the spectrum of healthcare, should consider Endometriosis in the differential diagnostic workup when symptomology, regardless of location, are cyclical and catamenial. The lack of awareness, and literature use of ‘rare’ hinders acknowledgement of ‘extra-pelvic’ diseases’ true prevalence. For decades the ‘extra-pelvic’ location in the thorax was considered ‘rare’ and in clinical practice and publications the term is still used. One of the most common manifestations of thoracic involvement is Catamenial Pneumothorax (CP). For 80 years the disease has slowly gained interest with more investigative research – limited initially to case studies, but has advanced to cohort studies in focused surgical centers. For decades endometriosis as etiology for spontaneous pneumothorax (SPT) in women at 3-6% of all occurrences. In the last decade, the estimated prevalance has been consistently reported as 25-35% of all women with SPT. (Rousset-Jablonski C et al. Catamenial Pneumothorax and endometriosis-related pneumothorax: clinical features and risk factors. Human Reproduction 2011;0(1):1-8.) This includes women with SPT that occur during the Catamenial time period and a smaller portion of women with SPT outside this time frame. Furthermore, the association between CP and Endometriosis was ambiguous. With the growing investigative research its association has been well established (Katje Bricel J et al. Catamenial Pneumothorax since introduction of video-assisted thoracoscopic surgery. Wiener klinische Wochenschrift-The Central European Journal of Medicine 2017;pp 1–10).

    How many ‘atypical’ women and adolescents are diagnosed with ‘IBS’? The ‘diagnosis’ used when there are no clinical explanations for symptoms. The lack of knowledge about this disease among ALL providers across the healthcare spectrum also contribute to the diagnostic delay or remain undiagnosed with failure to perform a ‘Systems Screen’ and investigate for association to menses in adolescent-to-menopause and realize disease can persist post-menopause.

    Failure to recognize that seizures, migraines, lung collapses and effusion, coughing blood, radicular nerve pain syndromes in the extremities, nose bleeds, altered bowel and bladder behaviors do occur. Referring to example of thoracic involvement, the prevalence of those who are ‘atypical’ and ‘extra-pelvic’ involvement are more prevalent that it is ‘rare’.

    The limited opportunities of providers to advance their knowledge about Endometriosis contributes to diagnostic delay and provider awareness of available treatments. Perusing prior Annual Conferences of the ACOG denotes Endometriosis educational opportunities are nearly negligible. Is this because there is no interest? No advances in treatments? Today’s literature continues to focus on pharmaceutical treatment for the disease yet, denoted at the WCE, no advance in this realm has occurred for over two decades. It is acknowledged that medical management is primarily effective for pain management while being administered and does not ‘cure’ or stop the disease. The average ObGyn adheres to their governing bodies recommendations to care for patients with this disease. My concerns are myriad with this. With the majority acknowledge difficulty identifying common presentations of the disease, how many can actually identify the various presentations of the disease, its stages of progression and where to look? How many providers leave disease in-situ on non-reproductive organs during procedures? Is this ethical? Providers who begin treatment with medical management and do not disclose the ‘life-time’ dosage limits a patient is to receive and continue to administer it past the manufacturers recommended duration, is this ethical? If a provider does disclose the maximum recommended duration to a patient, but fails to acknowledge that alternate forms of care, restricting the patient in available options and increasing her risk of long-term side-effects as a result, (ie. if a patient received ablation surgery which was ineffective previous but is not aware excision surgery is an option to explore) is this ethical?

    Recognition that Excision of Endometriosis is a effective treatment option for women with this disease is vital to improving the available choices given to women with this disease. The surgeons who have developed and honed advanced knowledge and surgical techniques which requires tenacity and meticulous handling deserve recognition and compensation for the services they provide. I cannot imagine the degree of physical and mental stamina, coupled with ability to develop and work alongside a multidisciplinary surgical team to eradicate this disease from each woman’s body. I have been blessed by this process, along with countless numbers of women, when the practice standards for endometriosis care by the Gyn community failed to recognize and address my concerns.

    I look forward to a future where conversations, particularly in a internist/general practitioner/pediatrician and ObGyn office goes something like this: ‘the regular pattern of your headaches, shortness of breath and diarrhea around the time of your menstrual cycles are suggestive we consider Endometriosis as the reason for your symptoms’…

  5. Joy Roberts says:

    CALL TO ACTION: 31Femtruth Ambassadors ask viewers to hear testimonies about women living with this disease. These are the stories of many women who 31 days in a month, 1 in 10 woman are suffering. By simply signing this petition you are voicing that this suffering must end. #ACOGhearmy #FemTruth #1in10

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