Red Flags: Myths and Misinformation

There are several red flags of perpetual myths/misinformation to watch for when evaluating information about endometriosis. Here are a few to be aware of:

1. “Hysterectomy is the definitive treatment for endometriosis.” Or variations of this theme: “Removing your uterus and/or ovaries will cure you”. Many people with endometriosis also experience problems with their uterus or ovaries (such as adenomyosis, fibroids, and other conditions that can contribute to chronic pelvic pain) that could benefit from a hysterectomy. However, using a hysterectomy to treat endometriosis alone may still leave you susceptible to continued symptoms and other problems from remaining lesions [one example: hydronephrosis from endometriosis left around ureters (Bawin, Troisfontaines, & Nisolle, 2013)].

• “Persistent or recurrent endometriosis after a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH BSO) has been reported by several investigators.” (Hasty & Murphy, 1995)
• “According to literature, there are no randomized controlled trials for hysterectomy as the treatment for endometriosis.” (Bellelis, 2019)
• “Endometriosis which is not removed at the time of hysterectomy and bilateral salpingo‐oophorectomy may represent after a variable time interval with many or all of the symptoms which prompted the original surgery. This tissue can be highly active and responsive to exogenous hormonal stimulation. In the presence of troublesome symptoms, excision of residual endometriosis may be effective and should be considered.” (Clayton et al., 1999)
• “A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation. The decision has to be weighed taking into consideration the patient’s age and the impact of early menopause on her life style. The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease. Surgical effort should always aim to eradicate the endometriotic lesions completely to keep the risk of recurrence as low as possible.” (Rizk et al., 2014)
• “We found that among women undergoing hysterectomy, endometriosis was associated with a higher degree of prescription of analgesics. In the endometriosis group the prescription of analgesic, psychoactive and neuroactive drugs did not decrease significantly after surgery. In fact, the prescription of psychoactive and neuroactive drugs increased.” (Brunes et al., 2020)
• “Studies have showed that the growth and progression of endometriosis continue even in ovariectomized animals.” (Khan et al., 2013)
• Read more here: “Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief”: http://endopaedia.info/treatment21.html

2. “All of your endo will die off in menopause.” Whether natural, surgically induced, or medically induced, there are cases of endometriosis continuing after menopause. Endometriosis lesions are capable of producing their own estrogen (Huhtinen, Ståhle, Perheentupa, & Poutanen, 2012). Another spin off is that “you are too old to have endometriosis”. Inceboz (2015) reports cases of endometriosis in the 8^th and 9^th decade of life. While some people’s symptoms do improve, it is not a sure thing.

• “As an estrogen-dependent disease, endometriosis was thought to become less active or regress with the onset of the menopause. However, based on some new data, we are discovering that this pathology can emerge or reappear at this period of life.” (Marie-Scemama, Even, De La Joliniere, & Ayoubi, 2019)
• “Endometriotic lesions remained biologically active, with proliferative activity and preserved hormonal responsiveness, even in the lower estrogenic environment in the postmenopause.” (Inceboz, 2015)
• “True prevalence of postmenopausal endometriosis is unknown. There have been some reports in the literature on the prevalence of endometriosis in postmenopausal women [5–8]. According to these studies, the prevalence of postmenopausal endometriosis is 2–5%…. Interestingly, nine of the cases were at the upper extreme of the age groups (eight were in 80–85 years and a case in 90–95 years).” (Inceboz, 2015)
• “Occurrence or progression of postmenopausal endometriosis lesions could be related to extra-ovarian production of estrogen by endometriosis lesions and adipose tissue, which becomes the major estrogen-producing tissue after menopause. Postmenopausal women with symptomatic endometriosis should be managed surgically…” (Streuli, Gaitzsch, Wenger, & Petignat, 2017)

3. “Getting pregnant will help.” However, endometriosis can cause infertility…..

• “Although gynaecologists often advise women that pregnancy has a beneficial effect on endometriosis, few studies confirm this association. Owing to the paucity and limited quality of the data, we can conclude that the behaviour of endometriotic lesions during pregnancy seems to be variable, ranging from complete disappearance to increased growth. Despite some of the early authors questioning a positive effect (McArthur and Ulfelder, 1965; Schenken et al., 1987), the idea to recommend pregnancy as part of the treatment strategy for endometriosis persists to this day (Rubegni et al., 2003; Coccia et al., 2012; Benaglia et al., 2013). The few favourable early observations and very limited options to treat endometriosis seem to have generated the myth of a beneficial effect of pregnancy and initiation of the so-called ‘pseudopregnancy’ therapy. Endometriosis is associated with infertility, and a lower prevalence of endometriosis in pregnant than in non-pregnant women may have led clinicians and scientists to the view that pregnancy has a positive effect against the disease.” (Leeners, Damaso, Ochsenbein-Kölble, & Farquhar, 2018)

4. “Mild endometriosis won’t affect fertility.” So-called “mild” or “minimal” endometriosis can affect the ability to conceive (Carvalho et al., 2012). Also, “mild” or “minimal” endometriosis can still produce significant symptoms (see Pain with Minimal Endometriosis).

• “The purpose of this systematic review is to present studies regarding the association between pregnancy rates and the presence of early stages of endometriosis. Studies regarding infertility, minimal (stage I, American Society of Reproductive Medicine [ASRM]) and mild (stage II, ASRM) endometriosis were identified…Earlier stages of endometriosis play a critical role in infertility, and most likely negatively impact pregnancy outcomes.” (Carvalho, Below, Abrão, & Agarwal, 2012)

5. “Hormonal suppressants will clean up the rest of the endometriosis.” Hormonal medications may be useful for other problems but cannot be relied upon to “clean up” or prevent recurrence of endometriosis. Surgeons who perform endometriosis surgery exclusively (excision) versus a general gynecological/obstetric practice have more chance to develop skill in being able to identify and being able to remove ALL endometriosis lesions (Khazali, 2020) (see Why Excision is Recommended).

• “Endometriotic stromal cells resist the antiproliferative effect of GnRH agonists and antagonists.” (Taniguchi et al., 2013)
• “This case demonstrates the obvious progression of deep rectal endometriosis despite 4 years of continuous hormonal therapy.” (Millochau et al., 2016)
• “Few studies of medical therapies for endometriosis report outcomes that are relevant to patients, and many women gain only limited or intermittent benefit from treatment.” (Becker et al., 2017)
• “There is currently no evidence to support any treatment being recommended to prevent the recurrence of endometriosis following conservative surgery.” (Sanghera et al., 2016)
• “A systematic review found that post-surgical hormonal treatment of endometriosis compared with surgery alone has no benefit for the outcomes of pain or pregnancy rates, but a significant improvement in disease recurrence in terms of decrease in rAFS score (mean = −2.30; 95% CI = −4.02 to −0.58) (Yap et al., 2004). Overall, however, it found that there is insufficient evidence to conclude that hormonal suppression in association with surgery for endometriosis is associated with a significant benefit with regard to any of the outcomes identified….Moreover, even if post-operation medication proves to be effective in reducing recurrence risk, it is questionable that ‘all’ patients would require such medication in order to reduce the risk of recurrence.” (Guo, 2009)
• “Many studies have investigated factors determining the recurrence of endometrioma and pain after surgery [16, 19, 20]…. Regardless of the mechanism, the present and previous studies suggest that postoperative medical treatment is known to delay but not completely prevent recurrence…. In our study, we also failed to observe a benefit for postoperative medication in preventing endometrioma and/or endometriosis-related pain recurrence.” (Li et al., 2019)
• “Furthermore, all currently approved drugs are suppressive and not curative. For example, creating a hormonal balance in patients by taking oral contraceptives, such as progestins and gonadotropin‐releasing hormone agonists, may only relieve the associated inflammatory status and pain symptoms.” (Che et al., 2015)

6. “If I respond to hormonal therapy then that means I have endometriosis.” Response to hormonal treatment, whether positive or negative, does NOT diagnose endometriosis or exclude it.

• “Relief of chronic pelvic pain symptoms, or lack of response, with preoperative hormonal therapy is not an accurate predictor of presence or absence of histologically confirmed endometriosis at laparoscopy.” (Jenkins, Liu, & White, 2008)
• “The definitive diagnosis of endometriosis can only be made by histopathology showing endometrial glands and stroma with varying degree of inflammation and fibrosis.” (Rafique & Decherney, 2017)

7. “My scans didn’t show anything so I was told I didn’t have endometriosis.” Transvaginal ultrasounds and magnetic resonance imaging are becoming more sensitive in the hands of those with experience and can rule in instances of endometriosis (especially deep infiltrating endometriosis and endometriomas). However, it cannot rule out endometriosis. (See But All Your Tests Are Negative)

• “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
• “Ultrasonography and magnetic resonance imaging can be used to diagnose ovarian endometriotic cysts and deep infiltrating endometriosis; but their performance is poor in the diagnosis of initial stages of endometriosis.” (Ferrero, 2019)

8. “None of my tests showed I had endometriosis.” Other tests, in addition to scans, cannot adequately rule out endometriosis with consistency or certainty.

• “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
• “CA‐125 and other serum markers (such as CA 19‐9, serum protein PP14, interleukins, and angiogenetic factors) have been measured in women with endometriosis but they are not reliable for the diagnosis of the disease.” (Ferrero, 2019)
• “The majority of studies focused on a panel of biomarkers, rather than a single biomarker and were unable to identify a single biomolecule or a panel of biomarkers with sufficient specificity and sensitivity in endometriosis. Conclusion: Noninvasive biomarkers, proteomics, genomics, and miRNA microarray may aid the diagnosis, but further research on larger datasets along with a better understanding of the pathophysiologic mechanisms are needed.” (Anastasiu et al., 2020)

9. “I was told I had IBS.”

• “Endometriosis can be commonly misdiagnosed as IBS [22] due to overlap in common symptoms and perhaps mechanisms of disease progression involving aberrant activation of inflammatory cascades.” (Torres-Reverón, Rivera-Lopez, Flores, & Appleyard, 2018)

10. “You are too young to have endometriosis.” Or “you are too young to have adenomyosis or DIE.” In those adolescents with chronic pelvic pain, endometriosis is a common discovery. Deep infiltrating endometriosis (DIE) can be found in teens.

• “Endometriosis is a common finding in adolescents who have a history of chronic pelvic pain or dysmenorrhoea resistant to medical treatment, however the exact prevalence is unknown. Both early/superficial and advanced forms of endometriosis are found in adolescents, including ovarian endometriomas and deep endometriotic lesions. Whilst spontaneous resolution is possible, recent reports suggest that adolescent endometriosis can be a progressive condition, at least in a significant proportion of cases. It is also claimed that deep endometriosis has its roots in adolescence.” (Sarıdoğan, 2017)
• “The majority of adolescent girls with chronic pelvic pain not responding to conventional medical therapy have endometriosis (up to 80%). Laparoscopy with biopsy is the only way to diagnose endometriosis in the adolescent population, and depends on recognition of atypical manifestations of the disease.” (Yeung Jr, Gupta, & Gieg, 2017)
• “Adolescent endometriosis is not a rare condition.” (Audebert et al., 2015)
• “An increasing body of literature suggests that advanced-stage endometriosis (revised scoring system of the American Society for Reproductive Medicine Stage III or IV) and deeply invasive endometriosis are relatively common in adolescents.” (Dowlut-McElroy & Strickland, 2017)
• “In all, 648 of 1011 (64%) adolescents undergoing laparoscopy were found to have endometriosis. The prevalence ranged from 25% to 100%, with a mean prevalence of 64%. Thirteen studies including 381 participants categorized disease severity using the revised American Society of Reproductive Medicine classification. Among these, 53% of participants (201/381) had stage I, 28% (105/381) had stage II, 20% (76/381) had stage III, and 13% (49/381) had stage IV disease. Conclusions: The prevalence of endometriosis among adolescents with pelvic pain symptoms is high. Endometriosis is treatable, and prompt recognition will help to ensure that adolescents are signposted earlier to appropriate specialists. The management of adolescents with suspected endometriosis should be consistent with best practice guidance. Despite recommendations to increase the awareness and knowledge of endometriosis in adolescence, minimal research has followed.” (Hirsch et al., 2020)

11. “My endo keeps coming back so there’s nothing I can do.” It can be difficult to ascertain if endometriosis truly reappeared or was all of it not removed previously (See Is There Microscopic or Occult Endometriosis). With repetitive surgeries or with endometriosis in certain locations (such as ureters, bowel, diaphragm, etc.), seeking someone who exclusively does surgery for endometriosis and its related conditions can be beneficial (Khazali, 2020). Often a team approach, utilizing other specialties as dictated by the individual’s case, is valuable (Khazali, 2020). (See Why Excision is Recommended) Recurrence can happen, more often in ovarian endometriosis, stage III and IV, and in those who were younger (Selçuk & Bozdağ, 2013). When looking at recurrence rates, it ranges from 6% to 67% (Selçuk & Bozdağ, 2013)! This wide range is due to many factors when evaluating studies- most studies do not differentiate the type of surgery, the type of surgeon (specialty center versus general gynecological practice), or the criteria for recurrence (was it reemergence of symptoms or repeat surgery) (Selçuk & Bozdağ, 2013). There are many related conditions that appear with endometriosis that can cause similar symptoms that should also be addressed (See Related Conditions).

• “A multidisciplinary team approach (eg, gynecologic endoscopist, colorectal surgeon, urologist) can reduce risk and facilitate effective treatment.¹⁹ Likewise, advanced surgical skills and anatomical knowledge are required for deep resection and should be performed primarily in tertiary referral centers. Careful preoperative planning, informed consent, and meticulous adherence to “best practice” technique is requisite to reduce morbidity and ensure effective management of potential complications.⁹⁰Although excisional biopsy and resection offers a higher success rate in treating the disease, surgical excision also requires a higher level of surgical skill. As a result, many patients receive incomplete treatment, which in turn may lead to persistent symptoms and recurrent disease. It should be noted that many women who have undergone repeated surgeries and had a hysterectomy still suffer.⁸⁶ The need to improve surgical approach and/or engage in timely referrals is unquestionable. Surgery to debulk and excise endometriosis may be “more difficult than for cancer”. Complete removal of implants may be difficult due to variation in appearance and visibility. True surgical resection and treatment poses formidable challenges, even the hands of experienced clinicians. In particular, deep disease is often difficult to treat due to close proximity of and common infiltration in and around bowel, ureters, and uterine artery.¹⁸ Potential adenomyosis should also be included in the preoperative workup, as it can influence postoperative improvement patterns of pain and symptoms associated with endometriosis.” (Fishcer et al., 2013)
• “All of the studies were conducted by expert laparoscopic surgeons, whose results are unlikely to be reproduced by the generalist surgeon…. Based on the studies performed to date, it is the author’s opinion that laparoscopic excision of endometriosis, when technically feasible, should be the standard of care. First, whereas visual diagnosis of endometriosis is correct in only 57% to 72% of cases, excisional surgery yields specimens for histologic confirmation—and identifies endometriosis in 25% of “atypical” pelvic lesions as well.¹⁸ The availability of such specimens would prevent unnecessary treatment and ensure more reproducible research findings. Excision should also reduce the incidence of persistent disease secondary to inadequate “tip of the iceberg” destruction, removing both invasive and microscopic endometriosis to provide the best possible symptom relief.” (Jenkins, 2009)
• “Laparoscopic identification of superficial endometriosis implants represents a challenge for the gynecologic surgeon. Endometriosis lesions may present in a wide spectrum of appearance according to a “lifecycle” of the implants. The lesions can be flat or vesicular. They can have any combination of color typically red, back/brown and white. Active “red” lesions, large endometriomas, deep infiltrating nodules, and typical “powder-burn” lesions are easier to identify than “white” old fibrotic lesions. The endometriotic implants are hypervascular. The diagnostic accuracy at laparoscopy is also affected by the experience of the surgeon and the laparoscopic equipment [16].” (Jose, Fausto, & Antonio, 2018)

12. “It’s all in your head.” When no visible cause is identified or usual treatments fail, the blame often gets shifted to the individual- that they are exaggerating or are not strong enough to deal with it or that they should be able to just live it. Sadly, one study (Rowe & Quinlivan, 2020) found that often a women’s fertility rather than quality of life was the driver for getting further care.

• “Women’s symptoms are frequently trivialized or disbelieved, consequently attributing pathology to the woman rather than the disease, which is deeply distressing [11]. These responses are underpinned by essentialist notions that pain is just part of being a woman. Lack of legitimation results in victim blaming, reinforces gendered stereotypes about feminine weakness, intensifies women’s distress and averts prompt action [10]. Similar essentialist ideas underlie observations that framing endometriosis as a fertility problem is more likely to result in health care intervention than when it is framed as symptom management. In one qualitative study, women described fertility as the entry point for discussion about endometriosis, despite having sought health care for symptoms over many years [12].” (Rowe & Quinlivan, 2020)
• “Endometriosis impairs the quality of life due to chronic and severe acyclic pelvic pain with associated dysmenorrhea, dyspareunia, gastrointestinal problems, fatigue and headaches….women with endometriosis are often surrounded by taboos, myths, scourge of subfertility, pain of disease and missed diagnosis and treatment [22]. Delays in the diagnosis and initiation of treatment for the disease in fact occur due to these counterproductive factors operative both at the individual patient level and at the medical level resulting in frustration and loss of valuable time in the prime phase of life of the patient….Delays also occur at the medical level due to the delay in referral from primary to secondary care, pain normalized by clinicians, intermittent hormonal suppression of symptoms, use of non-discriminating investigations and insufficiency in awareness and lack of constructive support among a subset of healthcare providers [23,24,25,37,38]. In this connection, it is noteworthy that delay in diagnosis is longer for women reporting with pelvic pain compared with those reporting with infertility, which is suggestive of the fact that there is a higher level of reluctance surrounding endometriosis-associated pain symptoms….” (Ghosh et al., 2020)
• “Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals…. Conclusions: Implications for health professionals are discussed, including the need for earlier diagnosis and taking women’s symptoms more seriously at referral…” (Grogan, Turley, & Cole, 2018)
• “Despite its high prevalence and cost, endometriosis remains underfunded and underresearched, greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options. Due in part to the societal normalization of women’s pain and stigma around menstrual issues…” (As-Sanie et al., 2019)

References: https://icarebetter.com/red-flags/