It’s Time We Talk About Endometriosis

Endometriosis—when the uterine lining grows outside of the uterus, resulting in severe pain, swelling and bleeding—is thought to affect more than 11 percent of all American women between the ages of 15 and 44. This condition impacts 6.5 million U.S. women, and 176 million women worldwide. Yet, it is still not easily recognized. It takes about 10 years from when women experience their first symptoms to receive an endometriosis diagnosis—half that time to recognize and bring up symptoms to a doctor and the other half for the doctor to diagnose it. For Endometriosis Awareness Month this March, we as obstetrician-gynecologists must do our part to raise awareness about the condition with our patients, strive to improve our understanding of the disease, and ensure more timely and accurate diagnoses.

Improving awareness and timely diagnosis of endometriosis helps women avoid unnecessary pain, and decrease infertility rates. Around 40 percent of all women with infertility have endometriosis and, of women diagnosed with endometriosis, about 40 percent experience fertility challenges. Many women struggling with infertility remain undiagnosed; others won’t be diagnosed with endometriosis until they start to experience problems conceiving. It falls to ob-gyns to reverse this trend, particularly as 63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.

Early endometriosis diagnosis and treatment lead to better outcomes. Careful listening and discussion are integral to early detection, as many common symptoms are not so obvious, such as chronic lower back pain and intestinal problems like diarrhea, constipation, bloating and nausea. We can also look for indicators that a woman is at greater risk of having endometriosis, including if she’s in her 30s and 40s; has a close relative who has been diagnosed with endometriosis (which increases risk by five to seven times); and has a higher body mass index (which is thought to promote the development of endometriosis because fat increases estrogen levels).

Raising awareness about endometriosis and increasing its timely diagnosis improves women’s lives. While symptoms may range in terms of severity, nearly all of them take a physical toll on a woman’s day-to-day life—from increasing tiredness to limiting her physical capabilities. It’s time to talk with our patients more regularly about endometriosis, and ensure more women are getting the care and support they need.

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About Tom Gellhaus, MD

Tom Gellhaus, MD is ACOG President through 2017. He is a Clinical Associate Professor in the Department of Obstetrics and Gynecology at the University of Iowa Hospitals and Clinics in Iowa City, Iowa. Dr. Gellhaus graduated from Yankton High School in Yankton, South Dakota, received his Bachelor of Arts Degree in Chemistry from Augustana College in Sioux Falls, South Dakota and his Doctor of Medicine Degree from the University of Oklahoma in Oklahoma City, Oklahoma. He completed his residency in Obstetrics and Gynecology at the University of Iowa Hospitals and Clinics. Following residency, he entered private practice in Davenport, Iowa and after 20 years in private practice, he returned to academic medicine at the University of Iowa. Over the past 20 years, Dr. Gellhaus has served in many ACOG positions at the local, regional, national and international levels. Dr. Gellhaus’ interests are in the areas of health care advocacy and policy. He has also been very involved and active in global healthcare. He has completed the McCain Fellowship, a month long in-depth experience in advocacy, at ACOG in Washington, D.C. in 1999. In 2001, he was a Primary Care Policy Fellow with the U.S. Department of Health and Human Services. He has remained active in Advocacy and Policy as a member of ACOG’s Government Affairs Committee and the Ob/Gyn PAC. Dr. Gellhaus has also been very active in leading groups on short-term medical and surgical mission projects for the last 20 years. He has done numerous presentations about these short-term medical and surgical mission projects throughout the United States.

19 thoughts on “It’s Time We Talk About Endometriosis

  1. Thank you sir for acknowledging that it is indeed time to talk about endometriosis care and more importantly about those whose lives it has affected. I’ve survived it for thirty years and soon will face my 56th surgery to repair the damage it has caused. I was 10 when my symptoms started and 15 when they became unbearable. At 22 I underwent my first surgery and by 26 had lost two babies, both ovaries and finally my uterus. That didn’t stop it either. I turned 55 and had my 55th surgery. It is time to listen to those of us who pioneered through the trenches to get here. Please stop this from happening to the next generation. This disease deserves to be more than just a topic in Med school or an option for GYN’s in practice. Thank you.

  2. Of course, everyone should realize that ultrasound is a great tool to diagnose endometriosis. Not only will it demonstrate endometriomas but with careful search, ultrasound will detect foci of DIE (deep invasive endometriosis) in various places (e.g. bladder wall, peritoneal surface).

  3. I am agree with the lecture of Dr.Gellhaus,ACOG PRESIDENT, because the Endometriosis, initially in young womens that offer pain, – dismenorrea- infertility, irregular menstruations , obesity, limiting her physical capabilities. Is very important to explain a the patients the aspects of disease. The goal standard is the laparoscopy diagnostic and therapeutic and categorized the grade of the endometriosis in relation with the infertilty.

  4. Please look for an article on Endometriosis in Clinician Reviews with a May 2017 anticipated publication date. This will serve to increase awareness among PAs and NPs, and assist them with management strategies.

  5. One thing that can delay the diagnosis of endometriosis is the fact that doctors are no longer doing rectal examinations. I am a senior citizen, and my generation of OB/Gyns were taught that a pelvic exam was not complete without a rectal. I have heard young doctors say, “My patients don’t like it.” My response is, ” What part do they like?” A very good indication of endometriosis is the finding of nodularity of the cul-de-sac and uterosacral ligaments, best found rectally. Sometimes in early endometriosis there is tenderness posterior to the cervix without obvious nodularity, but such a finding in the absence of obvious infection is enough to cause a suspicion of endometriosis.

  6. Thank you for the timely and important comment from ACOG. Endometriosis causes a tremendous burden of disease in the US and globally but is often underdiagnosed and inadequately managed. It is wonderful to see ACOG’s interest in this disease. All obstetricians and gynecologists can play a role in helping to improve care of women with endometriosis by following the recommendations above. David Adamson, MD, President, World Endometriosis Research Foundation (WERF).

  7. Very good enlightening discussion on one of the crippling yet most forgotten subject in particular in third world!!!thank you very much .

  8. We agree with all presented except the fact that it might be more common in obese women. In a demographic study looking at the possible historical associated factors with endometriosis, we found the most significant indicator was low BMI. This clearly is our clinical impression as well. Contrary to popular belief, obese PCOS women have unopposed estrogen but the estrogen levels are relatively low. After long term exposure to estrogen only at low levels, abnormalities such as endometrial hyperplasia and polyps are common. The levels are not high though and do not result in undue stimulation of endometriosis as commonly believed. We see a much higher incidence in women with low normal to low BMI. The so-called “over achiever, type A” women that were touted as the highest risk of endometriosis in the 80’s and early 90’s.

  9. Bravo!

    It is time that we started recognizing and treating this disease in a timely fashion. It devastates many young women at a critical point in their lives.

  10. We miss many dx by not listening. A 10 min encounter looking at a computer screen is NOT a patient visit. “Listen to the patient Doctor, she is telling you what is wrong”!

  11. It is with appreciation I read “It’s Time We Talk about Endometriosis.” I would respectfully suggest that the scope of persistent gaps in endometriosis also goes even further than the salient points above noting the need for increased awareness and timely diagnosis.

    A shocking 72% of those living with endometriosis have reported significant disease-related affects which interfere with their daily lives [Fourquet J, Gao X, Diego Z, et al. Patients’ report on how endometriosis affects health, work, and daily life. Fertil Steril. 2010;93(7):2424-2428], and the disease remains a top cause of chronic pelvic pain – yet access to effective care across all settings has failed to improve over decades. Endometriosis is particularly under-served at the non-specialist tier, with significant knowledge deficits contributing directly to the consequential diagnostic delays, sub-optimal treatments and poor outcomes so inherent to the condition. To that end, a most critical challenge persists: a lack of factual disease education, awareness and training. The dedicated treatment of endometriosis in tertiary referral centers remains neither acknowledged nor recognized by bodies of influence including ACOG, and the non-specialist majority continues to shape and inform the guidelines for the minority of true specialists who are highly capable of diagnosing and treating even the most complex of manifestations with great success.

    Moreover, adherence to Sampson’s outdated belief that endometriosis is simply normal endometrium detected outside the uterus continues to keep the disease mired needlessly in delayed diagnoses, hysterectomy, poor surgical treatments and ineffective medical suppressives. Although the ectopic tissue somewhat resembles its eutopic counterpart, the ‘lesions’ are vastly, histologically unlike normal endometrium – an important distinction. Recognizing these significant differences in invasive, adhesive and proliferative behaviors are important – critical even – to unlocking pathways which could one day lead to better understanding of the enigmatic disease and perhaps even universal cure.

    Research also remains sorely lacking. Though investigations are routinely conducted on various aspects of endometriosis and research may seem omnipresent, it is largely redundant in nature and sorely lacking in translational benefit, in the sense that it will not prove helpful to patients in the ‘here and now.’ Many of the studies underway are directed solely towards pharmaceutical management and do not provide long-term solutions; still others fail to examine the far-reaching impact of the disease in any meaningful way. Data also routinely conflicts e.g. the long term assumption that increased risk of developing endometriosis exists in those with higher body mass index vs. more recent data which implies higher body mass index may in fact be associated with lower risk of endometriosis [Liu Y, Zhang W. Association between body mass index and endometriosis risk: a meta-analysis. Oncotarget. 2017 Jan 31].

    Requisite invasive diagnosis notwithstanding, it is not necessarily difficult to suspect endometriosis in many of those who are suffering and assist them towards a timely diagnostic pathway, as hallmark signs often present early in life: for example, although many mistakenly believe the disease affects only older women in their 30s and 40s, a shocking near-70% of teens with pelvic pain will go on to be diagnosed with endometriosis later in life [Yeung P Jr, Sinervo K, Winer W, Albee RB Jr. Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary? Fertil Steril. 2011 May;95(6):1909-12, 1912.e1]. Moreover, while it is prudent to rule out differential diagnoses, physical examination and lab studies related to an endometriosis diagnosis have poor sensitivity, specificity and predictive values and thus they cannot be used to firmly diagnose – or rule out – the disease. Clinicians must also consider non-gynecologic symptoms as well, of course, but whereas some gynecologic providers will recognize the signs in their patients, non OBGYN clinicians are all too often poorly versed in the diagnostic workup of the disease – with direct consequences on delay in diagnosis and proper intervention.

    Still other data reflects what patients have said for years: that differing perceptions exist between clinicians vs. patients on pain issues; that there remains an emphasis on fertility status vs. quality of life; that instead of lending sufficient attention to patient complaints, many clinicians ignore or normalize them; and that education and disease awareness is sorely lacking even within the highest echelons of our professional community [Young et al.]. Dismissing and/or otherwise ignoring indications and hindering access to timely surgical diagnosis and treatment only serve to confound the patient’s scenario further and continue to result in delayed, mistaken and dismissive diagnoses i.e. sexually transmitted infection, conversion disorder [Smith RC, Dwamena FC. Classification and Diagnosis of Patients with Medically Unexplained Symptoms. Journal of General Internal Medicine. 2007;22(5):685-691], etc.

    Some also continue to argue for ‘empiric’ medical “diagnosis and treatment.” In fact, medical therapy is neither a diagnostic nor true treatment at all, but merely a stop-gap measure delaying the oft-inevitable need for proper surgical treatment. ACOG itself has lent support to this recommendation – yet, by own admission concurs that while preliminary nonsurgical treatments might be tried for pain measures in some patients, when these fail, they should be followed by “invasive procedures” vis a vis surgery. Ironically, the same guidelines issued on this topic indeed recognize the failure of medical suppression to treat the disease: “Medical therapy is effective while using it, but recurrence of pain symptoms is common after discontinuing the drugs.” [ACOG Bulletin, Pain Management of Endometriosis: Conservative Approach is First-Line Treatment. June 22, 2010. Web

    Likewise, far too many conclusions about treatment itself have been largely based on limited studies with sub-optimal design and more importantly, on the mistaken assumption that all surgery for endometriosis is performed by surgeons of similar caliber, overlooking the wide discrepancy that actually exists [Albee]. Such postulation does not address the issue of completeness in removing all disease at the time of diagnosis and ignores the excellent results of truly skilled excisionists with adequate experience in disease recognition and total resection. Policies continue to advocate for and reward hysterectomy (which may be needless in many cases); expensive, ineffective medical therapy that has never been proven to confer long-term relief; and incomplete operative measures, and fail to recognize endometriosis care as a specialty – a grave injustice to those seeking quality care.

    Even those who are ultimately directed towards effective resources for quality care may find themselves faced with insurmountable insurance and financial barriers; one of which could be straightforwardly addressed by classifying Laparoscopic Excision under its own code, thus demonstrating not all destruction of endometriosis is of equal efficacy and available in every setting. That it is neither the single element of a high-quality multidisciplinary approach nor universally effective for every single patient notwithstanding, Laparoscopic Excision remains a feasible technique which can be extremely effective in reducing pain, improving quality of life, restoring fertility and anatomic function, and preserving healthy organs in the majority of patients with the disease – a stark contrast to ablation and other superficial surgeries so routinely performed by subspecialists. The skill and compassion of the many providers who are restoring the quality of life and markedly improving the health and well-being of their patients every day – in spite of the failing guidelines endorsed and embraced by many outside the dedicated centers of excellence – should be acknowledged and recognized for the specialty it is.

    All concerned with endometriosis and pelvic pain will – or should – agree that increased, accurate awareness and early, quality intervention is indeed requisite to reduce the morbidity, infertility and progressive symptomatology of the disease in affected patients of all ages. It is even clearer that failures to diagnose and treat effectively through well-timed approaches by those who can truly excise – particularly in cases of deep disease – are of great consequence to patients. One need only spend a short time truly immersed in the patient population to realize the far-reaching physical and emotional impact of endometriosis and the toll which repeated surgical and medical interventions take, though the literature is often far removed from such first-hand experience(s).

    Legislators, payers and the bench to beltway organizations who ostensibly advocate for endometriosis must be fervently appealed to with a plea to reconsider current precedents and move towards increased – accurate – education, awareness and training, and well-timed referrals to those who practice a gold standard multidisciplinary approach for the best care of individuals with the disease; for if we are to continue to accept the status quo, we will continue to do little to advance. It is imperative that endometriosis is elevated to a priority public health platform and the specialty treatment of the disease receives the recognition it deserves.

    Indeed, those affected by endometriosis have been talking about the highly negatively impact the disease has on the social, physical, emotional and sexual aspects of their life for decades; perhaps the time has finally come to listen.

    Heather Guidone

  12. Applauds ACOG for recognizing endometriosis as an important issue. This should be the beginning of ABOGs commitment to endometriosis. It’s important to remember that we must think about endometriosis in young teens who begin menstruating and have dysmenorrhea and miss school. Your article identifies women in 30s and 40s as being at greater risk, but fails to mention teenagers. What can ABOG do to help educate gynecologists especially if you state that over 60% feel uncomfortable identifying and treating Endometriosis? I challenge ABOG to change the narrative of 10+ years from symptom onset to diagnosis and shorten that duration by helping to properly educate medical students, residents and OB/GYN’s who are established in their career. Perhaps an article in the maintenance of certification series about endometriosis and early diagnosis with up-to-date information. The days of hysterectomy as the treatment of endometriosis are over..rather, excision of endometriosis is the ultimate treatment of endometriosis. —Iris Kerin Orbuch, MD

  13. I write in response to your acknowledgement that majority of Gyn’s are not comfortable with diagnosis and treatment of this disease. This is appreciated.

    However, I hope that the sacrifice of my quality of life time with family and career that I worked for my entire life, taken from me by a lack of other providers education, clinical history and differential diagnostic skills, has not been in vain….. We are ALL hear, We are ALL watching and We ALL need change.

    It is time to increase the Quantity and Quality of Endometriosis education at EVERY level. All theories of origin and pathology be explored. It is time to develop a program that acknowledges Endometriosis as a sub-specialty and pathway to develop the advanced knowledge and surgical skills to treat this disease. Let me enlighten you of the life of a self-made woman who was undiagnosed for 30 years that must now deal with the destruction left behind due to repetitive dismissal and provider ignorance.

    I am 48. I am a women who is the first in my family lineage to ever attain an advanced degree. In fact, a Doctorate of Physical Therapy. At age 17 I developed respiratory symptoms (are you aware that females as young as 11 years old have suffered Catamenial Pneumothoraces?) and mid 20’s pelvic and GI symptoms. I was never informed that Pap Smears and Intimacy should not be painful. I was never told that cyclical bowel and bladder changes, nausea, occassional vomitting with menses and painful bowel movements were not normal. I was never asked about the lung collapses, dyspnea, chest, neck, shoulder, jaw and scapular pains that were catamenial. When I sought care for these concerns -I was repeatedly dismissed, told “none of those things are related”, “it’s impossible”, “it can’t travel that far” and “it’s too rare”. So, dismissal resulted in 30 yrs of disease progression…IF ONLY you could see how the lack of education and up-to-date knowledge for providers, the dismal quantity, practically non-existent, Endo offerings at conferences (particularly related to the advanced art of Excision that removes the disease, identification of the myriad forms, appearances and locations of the disease) plays a HUGE roll in the dismissal of patients with Endo by layperson Gyn’s.

    The lack of understanding, awareness and in-depth training in the disease prevents the practitioner from truly understanding, empathizing and tackling this destructive disease. At 48 and castrated, the nightmare has not ended for me and many other women who are ‘post-menopausal’. However, a year ago a traveled cross-country to a excision doctor who chiseled away at fibrotic pelvis to rib adhesions, did his best to restore anatomy, removed a few organs, removed pieces of my diaphragm and lung etc….a doctor who dedicates his life to this disease and not a multiinterest doc. I was at the end of my coping rope and could barely walk upright or sit in a car, or up at 90 degrees to eat or work on the computer more than 15′ somedays in the year leading up to this. They gave me hope. I am, by far, not the only woman with a story like this.

    Sadly, having the premonition and living the descent into the hell of a patient who is percieved from a provider as ‘exaggerating’, ‘its in your head’ and viewed as a ‘chronic pain patient’ has been one of the hardest things for me to endure, particularly being a healthcare provider. I never asked for this and, as a PT always vowed to never view my own clients in the way that so many providers do. Unfortunately, being on the other side of the relationship and enduring this from dismissing providers has been the most difficult aspect to overcome.

    Please consider reaching out to those who have invested their lives in this disease. The World Endometriosis Research Foundation and World Endometriosis Society are dedicated in the fight against this disease. Working alongside them to move from myths and perpetual ineffective treatment to integration of recent advances in understanding and identification is the best place to start. By establishing a better foundation of education in the disease will help practitioners consider Endo in their differential diagnoses with recognition of many key attributes that are seen in the disease. When the average gyn offers drugs and states they must follow the guidelines of their licensing body, the entity responsible to create the change has been identified. We are All watching, We ALL need the change (patients and providers).

  14. Endometriosis is not actually endometrium, although it is similar. I suffered many agonizing years of pain from stage 4 endo to include 4 surgeries that were useless. I finally found a true expert at endo excision at the Center for Endometriosis care 10 years ago. I’ve been pain & symptom free 10 years no thanks to all those Ob/Gyns who told me to take Lupron or have a hysterectomy. Their knowledge & education was sorely lacking, & caused me over 16 years of pain & a horrible quality of life. We must demand far better care, like that provided from doctors like those at the CEC who have trained themselves far beyond most in their field. For them I will be forever grateful.

  15. I am appreciative of the awareness article on endometriosis and particularly with the accurate clinical profile. We in our 20,000 member education group (still gaining over 300 a week) find that the ages are ranging from 11 or 12 well into the 50’s. By the time they reach menopause, they have been totally dismissed as neurotic and told that endo withers away with menopause. But in fact they have active painful disease, often DIE of bowel and or USL’s. For most in that age group they have had to give up on sex entirely and often find bowel movements exquisitely painful. The emotional toll from the lack of medical support is stunning.

    I do hope we could open the parameters to look at this older group of patients, who very frequently have been told it is impossible to have endometriosis after TAH/BSO or after natural menopause. So many are just left to suffer silently. a very significant portion have lost careers, significant others, been abandoned in disbelief of their disease by their families and friends, lost jobs, and are in deep despair. Endometriosis is not a terminal disease, but with the peritoneal quality pain along with the abandonment of everyone around them, despair can be.

    Nearly all of my 20,000 members have failed all gynecology has to offer aside from skilled excision of their disease . Many were places on suppressive medications when younger for “minimal” and now still seeking help are found to have more complex disease and not infrequently DIE.

    A very large percentage are being told they have Crohns disease or IBS and in fact endo is found on or near the bowel, once removed symptoms resolved. We really have a long ways to go to get an accurate symptom profile out to all care givers, primary care, NP’s and gyn. Way too often classic symptoms are missed.

    Nancy Petersen RN
    Endometriosis Patient Advocate

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