Endometriosis Awareness Week 1
Endometriosis awareness month has arrived! Here is a week’s worth of shareable information. Another good link to share is our basic all About Endometriosis that has short and to the point information about endometriosis as well as links for more info. Keep that endo conversation going!
Endometriosis is found outside of the uterus. It can be on many locations both in the pelvis and outside the pelvis. Find more info on endometriosis locations here: https://icarebetter.com/locations-of-endometriosis/ and https://icarebetter.com/weird-places-endometriosis-has-been-found/
There are key differences in how endometriosis lesions differ from the lining of the uterus- which affects how it responds to its environment and to medications:. Find more info here: https://icarebetter.com/role-of-estrogen-receptor-%ce%b2-in-endometriosis/ and https://icarebetter.com/progesterone-resistance-in-endometriosis/
An estimated 11% of women are affected by endometriosis, although it is not restricted to only women. https://icarebetter.com/endometriosis-overview/
Despite the high incidence, diagnosis often delayed by 10 years due to symptoms being misdiagnosed or dismissed as normal menstrual cramps, by the lack of satisfactory biomarkers to diagnose, and by the definitive diagnostic standard being surgical visualization with histological confirmation. https://icarebetter.com/endometriosis-overview/
The symptoms of endometriosis can impact a person’s life in many ways. It can be costly in both medical costs and loss of ability to work. It can also affect relationships and a person’s sense of self. For more info, see: https://icarebetter.com/endometriosis-impact-on-work/ ; https://icarebetter.com/the-costly-burden-of-endometriosis/ ; https://icarebetter.com/the-personal-burden-of-endometriosis/
Pain can not only affect the ability to work and to attend school, it can affect a person’s ability to exercise, sleep, and be able to perform daily activities. https://icarebetter.com/insomnia-and-poor-sleep-with-endometriosis/
There are several theories as to the cause of endometriosis, but none have been proven. It has been seen in fetuses and has a genetic component. For more info, see: https://icarebetter.com/origin-theories-of-endometriosis/
Definitive diagnosis of endometriosis is through surgery with biopsies. Symptoms can indicate it, but there are many conditions with similar symptoms that overlap endometriosis. Response to hormonal medications is not reliable as a diagnosis. Ultrasounds and MRI’s can find endometriosis in some cases, but negative scans can not rule endometriosis out. For more info, see: https://icarebetter.com/diagnosis/
Endo Awareness- Start the Conversation
March is endometriosis awareness month, and it is time to start the conversation about endo. Endometriosis can take an average of 10 years before a diagnosis and even longer to find effective treatment. That’s why it is important to start that conversation about endometriosis- with family, with friends, with your healthcare providers.
Every day in March we will be sharing a short infograph about endometriosis along with links to more information that you can share. If we all reach out to another, perhaps we can help someone else not have to experience the often long delays in diagnosis and adequate treatment for endometriosis. Time to start the conversation!!!
You can start with some of these:
- Nancy’s Nook website: https://icarebetter.com/
- Endometriosis graphics to share: https://icarebetter.com/endometriosis-graphics/
- Articles and Website Links: https://icarebetter.com/articles-and-website-links/
- Podcasts and Videos: https://icarebetter.com/podcasts-and-videos/
Get your yellow ready!
Thank you for your support in being able to keep this website going! https://icarebetter.com/support-us/
Surgery- expertise matters
The gold standard for diagnosis of endometriosis is through laparoscopic surgery. The knowledge and skill of the surgeon can affect the ability to accurately identify endometriosis- in order to not only diagnose it but to also successfully remove all disease (Jose, Fausto, & Antonio, 2018; Fischer et al., 2013). In addition to the appearance of endometriosis, the numerous locations, including lesions not confined to the pelvis, can make surgery more complicated (endometriosis can involve areas such as ureters, bowel, or diaphragm that require a higher level of care).
Leibetseder et al. (2022) reports that “in over 60% of diagnosed cases, endometriosis treatment requires multiple surgeries due to unidentified (missed) lesions.” Fattah et al. (2017) also echoes this, pointing out that “the numerical importance of atypical, subtle, non-hemorrhagic disease has recently been shown: at least two-thirds of patients have a visual appearance of disease that many clinicians have not been trained to recognize…” Fischer et al. (2013) states that “although 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.” Rolla (2019) remarks that “the treatment of endometriosis requires a delicate and experienced surgeon and, if it is the case, an interdisciplinary team, including gastrointestinal surgeons or urologists (or both), in selected patients.”
Achieving expertise in endometriosis surgery requires a lot of time and dedication. Some surgeons devote a large portion or all their practice to the surgical treatment of endometriosis- meaning more practice and skill in identifying and removing endometriosis. Some also have a multidisciplinary team that they work with in order to treat endometriosis in more complicated areas (such as ureters, bowel, thoracic). While endometriosis is reported by the World Health Organization (2021) to affect 190 million worldwide, the availability of endometriosis specialty care is not in keeping with the number of those who suffer with endometriosis. As-Sanie et al. (2019) states that “despite its high prevalence and cost, endometriosis remains underfunded and under researched” and indicates that this is “due in part to the societal normalization of women’s pain and stigma around menstrual issues, there is also a lack of disease awareness among patients, health care providers, and the public.” Endometriosis awareness month is next month- time to help raise awareness about this often debilitating disease that affects so many.
References
As-Sanie, S., Black, R., Giudice, L. C., Valbrun, T. G., Gupta, J., Jones, B., … & Nebel, R. A. (2019). Assessing research gaps and unmet needs in endometriosis. American journal of obstetrics and gynecology, 221(2), 86-94. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0002937819303850
Fattah, H. A., Helal, S. M. F., Hosny, T. A., & Basuni, S. M. A. (2017). Reliability of Visual Diagnosis of Peritoneal Endometriosis. Red, 23, 27-06. Retreived fromhttps://www.researchgate.net/profile/Tamer-Hosny/publication/324706887_Reliability_of_Visual_Diagnosis_of_Peritoneal_Endometriosis/links/5c60543c45851582c3dd583f/Reliability-of-Visual-Diagnosis-of-Peritoneal-Endometriosis.pdf
Fischer, J., Giudice, L. C., Milad, M., Mosbrucker, C., & Sinervo, K. R. (2013). Diagnosis & management of endometriosis: pathophysiology to practice. APGO Educational Series on Women’s Health Issues. Retrieved from https://www.ed.ac.uk/files/atoms/files/diagnosis_and_management_of_endometriosis_booklet.pdf
Jose, C., Fausto, A., & Antonio, L. (2018). Laparoscopic Enhanced Imaging Modalities for the Identification of Endometriosis Implants a Review of the Current Status. MOJ Womens Health, 7(1), 00160. DOI: 10.15406/mojwh.2018.07.00160
Leibetseder, A., Schoeffmann, K., Keckstein, J., & Keckstein, S. (2022). Endometriosis detection and localization in laparoscopic gynecology. Multimedia Tools and Applications, 1-25. Retrieved from https://link.springer.com/article/10.1007/s11042-021-11730-1
Rolla, E. (2019). Endometriosis: advances and controversies in classification, pathogenesis, diagnosis, and treatment. F1000Research, 8. Retrieved fromhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6480968/
World Health Organization. (2021). Endometriosis. Retrieved from https://www.who.int/news-room/fact-sheets/detail/endometriosis#:~:text=Endometriosis%20affects%20roughly%2010%25%20(190,and%20girls%20globally%20(2).
Using symptoms to lead to earlier diagnosis
Last week we talked about pain and how early intervention is important. In order to achieve this early intervention, early diagnosis is critical. The gold standard for diagnosis involves surgery, which can be delayed while trials of medications and other studies are performed. At times, with expert training, ultrasounds and MRI’s can rule in endometriosis (but do not necessarily rule it out). And while there is promising research into biomarkers for endometriosis, none have demonstrated the reliability for widespread use (https://icarebetter.com/labwork-and-blood-tests/ ). Another approach to increase the suspicion of endometriosis and hopefully lead to quicker diagnosis is symptoms.
There has been much research on the symptoms involved with endometriosis, such as chronic pelvic pain. Some researchers are trying to develop “machine learning algorithms (MLA) to predict the likelihood of endometriosis” (Bendifallah et al., 2022). One study in France looked at developing such technology to help indicate to both clinicians and patients a higher probability of endometriosis. One caveat of the study was that they did not use the gold standard of diagnosis for endometriosis (surgical confirmation)- they identified patients “with diagnosis of endometriosis based on previous treatment for endometriosis or clinical examination confirming deep endometriosis, or sonography/MRI detecting ovarian, peritoneal or deep endometriosis.”
They developed a screening tool that utilized “16 clinical and symptom-based features” to make an algorithm to help aid in the “early prediction of endometriosis.” They used metrics such as age, BMI, dysmenorrhea, defecation pain, urinary pain during menstruation, sexual intercourse pain, absenteeism during last 6 months, right shoulder pain near or during menstruation, abdominal pain outside menstruation, low back pain outside menstruation, leg pain suggesting sciatica, mother/daughter history of endometriosis, number of nonhormonal pain treatments used, history of surgery for endometriosis, blood in urine during menstruation, and blood in stool during menstruation.
The researchers hope that utilization of the tool would help “reduce ‘diagnostic wandering’, and hence diagnostic delay, and result in earlier treatment” (Bendifallah et al., 2022). The researchers developed the tool with patients in mind. They report “since delays in diagnosis may contribute to undertreatment, continued pain, and prolonged symptom impact which impairs women’s quality of life, helping patients to recognize their symptoms is a crucial step toward diagnosis and effective management of endometriosis” (Bendifallah et al., 2022).
This research highlights the importance of patients monitoring their symptoms and working with their healthcare provider to achieve that earlier diagnosis and treatment. Some of these symptoms might include:
- Severe pain during menstruation (see “Pain“)
- Pelvic or abdominal pain not associated with menses
- Low back and/or leg pain
- Pain with sex (see “Sexual Functioning“)
- Painful bowel movements
- Stomach problems including nausea, bloating, diarrhea and/or constipation (see “Bowel/GI“)
- Fatigue (see “Fatigue” and “Inflammation“)
- Infertility (see “Fertility Issues“)
For more information on symptoms of endometriosis, see https://icarebetter.com/endometriosis-symptoms/ .
Here is a link to what the researchers used: https://ziwig.com/
Bendifallah, S., Puchar, A., Suisse, S., Delbos, L., Poilblanc, M., Descamps, P., … & Daraï, E. (2022). Machine learning algorithms as new screening approach for patients with endometriosis. Scientific Reports, 12(1), 1-12. Retrieved from https://www.nature.com/articles/s41598-021-04637-2
Pain- it’s complicated
Pain is a complex phenomenon, with multiple contributing factors. It is also one of the most prevalent symptoms of endometriosis. Pain can be a mix of several factors, such as inflammation, nerves, and myofascial components. Maddern et al. (2020) looked at the inflammatory and nerve component to pain with endometriosis. They report that the inflammation caused by the presence of endometriosis lesions activates sensory nerves and pain pathways. This activation of nerves then signals the body to incite more inflammation, which leads to more nerve activation.
The longer this goes on then it creates a positive feedback loop where the nerves are primed for pain (which is part of the reason why earlier intervention is important). Maddern et al. (2020) note that in endometriosis lesions there are “increased density of small, unmyelinated nerve fibers.” They report that the “vast majority of these unmyelinated nerve fibers have been identified as C-fiber sensory afferents, unmyelinated nerves that typically function as nociceptors, implicating them strongly in the generation of CPP [chornic pelvic pain] in endometriosis” (Maddern et al., 2020). The authors report that the “early removal of lesions, before they established nerve fiber innervation” is important (Maddern et al., 2020).
Maddern et al. (2020) also state that this activation of nerves in one area can cause cross activation of other nerve pathways in nearby organs (such as colon and bladder). Endometriosis lesions can promote the growth of more nerves and blood vessels called neuroangiogenesis. “Neuroangiogenesis aids irritation and invasion of existing nerves” and “the close proximity of endometrial adhesions and lesions to pelvic nerves can cause their encapsulation or compression, which contributes to CPP [chronic pelvic pain] associated with endometriosis” (Maddern et al., 2020). People with “endometriosis have a high comorbidity rate with other chronic pain syndromes associated with peripheral and central changes in pain processing, including, fibromyalgia, migraine headaches, IBS and painful bladder syndrome” (Maddern et al., 2020)
Another contributing factor to this loop of pain is the affects on muscles and the fascia of the body. “Myofascial pain arises from dysfunction in the muscle and surrounding connective tissue” (Aredo et al., 2017). Aredo et al. (2017) reports that “ongoing visceral input can produce increased muscle tone and spasm” in addition to “‘guarding reflexes,’ which involve heightened sacral reflexes that are triggered by visceral pain and inflammation, could contribute to muscle tightening and result in pelvic floor dysfunction.” This myofascial pelvic pain can manifest as pain with penetration, defecation, and urination (Aredo et al., 2017). As Aredo et al. (2017) points out, “a myofascial component to pelvic pain adds another dimension to a patient’s disease and requires its own diagnosis and treatment.” This involvement of the myofasica can create what are called myofascial trigger points (MTrP). Aredo et al. (2017) states that:
“Once formed, MTrPs can become a self-sustaining source of pain even after the visceral insult has resolved. Active MTrPs, in particular, serve as a source of ongoing nociception; they can reduce pain thresholds, enhance visceral and referred pain, and sensitize the nervous system. In regard to endometriosis, MTrPs that develop secondary to disease could sustain the pain and dysfunction despite lesion removal and hormonal management.”
This is just the tip of the iceberg in the complicated process of pain with endometriosis. It is multifactorial and requires multidisciplinary care.
References
Aredo, J. V., Heyrana, K. J., Karp, B. I., Shah, J. P., & Stratton, P. (2017, January). Relating chronic pelvic pain and endometriosis to signs of sensitization and myofascial pain and dysfunction. In Seminars in reproductive medicine (Vol. 35, No. 01, pp. 088-097). Thieme Medical Publishers. Retireved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5585080/
Maddern, J., Grundy, L., Castro, J., & Brierley, S. M. (2020). Pain in endometriosis. Frontiers in Cellular Neuroscience, 14. Retreived from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7573391/
MRI and expert training
We have noted before that specialized training and experience is highly beneficial in the ability to diagnose and treat endometriosis. This includes the technicians and providers who read imaging prior to surgery. Another study published this year confirms this again with regards to MRI’s. Widschwendter et al. (2022) report that “expert training led to a considerable increase in sensitivities for the overall detection of DIE” and the authors concluded that “after expert training, MRI has a good sensitivity with fair specificity regarding preoperative assessment of presence, location and extent of DIE” (Widschwendter et al., 2022). This can help the surgeon(s) prepare for a team based approach prior to surgery.
See here for more information on diagnosis: https://icarebetter.com/diagnosis/
Reference
Widschwendter, P., Köhler, M., Friedl, T. W. P., Ammann, B., Janni, W., Rhomberg, C., … & Polasik, A. (2022). Diagnosis of presence and extent of deep infiltrating endometriosis by preoperative MRI–improvement of staging accuracy by expert training. Journal of Gynecology Obstetrics and Human Reproduction, 51(1), 102236. Retrieved from https://doi.org/10.1016/j.jogoh.2021.102236
Endocannabinoids and endometriosis
There has been an increase in research on endocannabinoids and their role in health. There are two main cannibinoid receptors that have been studied. CB1 receptors have been largely studied for their role in the central nervous system, while CB2 is more associated with immune function and has been investigated for its effect on inflammation (Ashton & Glass, 2007). However, one study notes that “CB1 receptors are highly expressed in the uterus” and that “CB2 receptors are preferentially expressed abundantly in the immune system and intestines and in other tissues such as the lungs, uterus, pancreas, and skin” (Bouaziz et al., 2017). The authors of that same study note that “the levels of expression of CB1 and CB2 are variable during the menstrual cycle” (Bouaziz et al., 2017). In addition, endocannabinoids have been found to have an effect on hormones- inhibiting luteinizing hormone and prolactin secretion (Oláh, Milloh, & Wenger, 2008).
Relating specifically to endometriosis, one study noted that there may be an association between the endocannibinoid system (eCB) and endometriosis-associated pain (Andrieu et al., 2022). Andrieu et al. (2022) states that “endocannabinoid levels fluctuate in inflammatory conditions and as such may take part in endometriosis-associated pain.” McPartland et al. (2014) reports that “emerging literature documents the ‘eCB deficiency syndrome’ as an etiology in migraine, fibromyalgia, irritable bowel syndrome, psychological disorders, and other conditions.” Endometriosis might fit in that eCB deficiency category as another study notes that “some of the studies that we reviewed described endometriosis as an “endocannabinoid deficiency” condition, thereby partially explaining its implication with pain” and that “women with endometriosis have lower levels of CB1 receptors in endometrial tissue” (Bouaziz et al., 2017).
Emerging evidence suggests that the eCB system is involved in inflammation and pain, and that this system may be altered in those with endometriosis. How can we help our eCB system? First, removing the endometriosis tissue that is contributing to inflammation. McPartland et al. (2014) notes that certain medications help upregulate the eCB system, including acetaminophen, non-steroidal anti-inflammatory drugs, opioids, glucocorticoids, antidepressants, antipsychotics, anxiolytics, and anticonvulsants. The authors do note certain caveats to this, such as “chronic opiate administration, however, may have a deleterious effect on the eCB system” and that “combining NSAIDs with cannabinoids (either eCBs or exogenous cannabinoids) produces additive or synergistic effects” (McPartland et al., 2014). The authors also note that some complementary and alternative medicine also upregulate the eCB system, such as: “massage and manipulation, acupuncture, dietary supplements, and herbal medicines” as well as “lifestyle modification (diet, weight control, exercise…)” along with stress reduction techniques like “meditation, yoga, and deep breathing exercises” (McPartland et al., 2014). The authors also found that “chronic stress impairs the eCB system” and that certain chemicals in the environment (such as pesticides and phthalates) can affect the eCB system (McPartland et al., 2014).
References
Andrieu, T., Chicca, A., Pellegata, D., Bersinger, N. A., Imboden, S., Nirgianakis, K., … & Mueller, M. D. (2022). Association of endocannabinoids with pain in endometriosis. Pain, 163(1), 193-203. Retrieved from https://pubmed.ncbi.nlm.nih.gov/34001768/
Ashton, J. C., & Glass, M. (2007). The cannabinoid CB2 receptor as a target for inflammation-dependent neurodegeneration. Current neuropharmacology, 5(2), 73-80. doi: 10.2174/157015907780866884
Bouaziz, J., Bar On, A., Seidman, D. S., & Soriano, D. (2017). The clinical significance of endocannabinoids in endometriosis pain management. Cannabis and cannabinoid research, 2(1), 72-80. Retrieved from https://www.liebertpub.com/doi/full/10.1089/can.2016.0035
McPartland, J. M., Guy, G. W., & Di Marzo, V. (2014). Care and feeding of the endocannabinoid system: a systematic review of potential clinical interventions that upregulate the endocannabinoid system. PloS one, 9(3), e89566. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951193/
Oláh, M., Milloh, H., & Wenger, T. (2008). The role of endocannabinoids in the regulation of luteinizing hormone and prolactin release: Differences between the effects of AEA and 2AG. Molecular and cellular endocrinology, 286(1-2), S36-S40. Retrieved from https://pubmed.ncbi.nlm.nih.gov/18308464/
Gut microbiota and endometriosis
There is a lot of interest in research about the effect of the gut microbiota on our health. The gut microbiota is the collection of microorganisms that live in the human gastrointestinal tract. The “intestinal bacteria play a crucial role in maintaining immune and metabolic homeostasis and protecting against pathogens” and “altered gut bacterial composition (dysbiosis) has been associated with the pathogenesis of many inflammatory diseases and infections” (Thursby & Juge, 2017).
Xu et al. (2017) note that:
“Gut microbiota can interact with the central nervous system through the gut–brain axis, thus affecting the host’s chronic stress level, such as anxiety and depression. Current researches show that patients with endometriosis often have a high level of chronic stress, which will in turn aggravate endometriosis by activating the β-adrenergic signaling pathway…. We found that in patients with endometriosis, the dysbiosis of gut microbiota was associated with their stress levels. Furthermore, the levels of Paraprevotella, Odoribacter, Veillonella, and Ruminococcus were significantly reduced in chronic stressed endometriosis patients, suggestive of a disease-specific change of gut microbiota at the genus level. Compared to the healthy women, the expression levels of inflammatory cytokines, nuclear factor-κB p65, and cyclooxygenase-2 increased in the chronic stressed endometriosis patients, indicating that the dysbiosis of gut microbiota may activate the inflammatory pathway of gut–brain axis.”
Perrotta et al. (2020), while exploring the gut and vaginal microbiota of people with endometriosis, found that “vaginal microbiome may predict stage of disease when endometriosis is present”. That is pretty specific microbiota! It is not clear whether the inflammation from endometriosis causes changes to the gut microbiota and/or the gut microbiota increases inflammation associated with endometriosis (or both). However, Bolte et al. (2021) found that:
“Higher intake of animal foods, processed foods, alcohol and sugar, corresponds to a microbial environment that is characteristic of inflammation, and is associated with higher levels of intestinal inflammatory markers…. Modulation of gut microbiota through diets enriched in vegetables, legumes, grains, nuts and fish and a higher intake of plant over animal foods, has a potential to prevent intestinal inflammatory processes at the core of many chronic diseases.”
This suggests that a healthy diet may help improve the gut microbiota and potentially inflammation. It is not known whether this would have a significant impact on symptoms experienced.
References
Bolte, L. A., Vila, A. V., Imhann, F., Collij, V., Gacesa, R., Peters, V., … & Weersma, R. K. (2021). Long-term dietary patterns are associated with pro-inflammatory and anti-inflammatory features of the gut microbiome. Gut, 70(7), 1287-1298. Retrieved from https://gut.bmj.com/content/70/7/1287
Perrotta, A. R., Borrelli, G. M., Martins, C. O., Kallas, E. G., Sanabani, S. S., Griffith, L. G., … & Abrao, M. S. (2020). The vaginal microbiome as a tool to predict rASRM stage of disease in endometriosis: a pilot study. Reproductive Sciences, 27(4), 1064-1073. Retrieved from https://link.springer.com/article/10.1007/s43032-019-00113-5
Thursby, E., & Juge, N. (2017). Introduction fo the human gut flora. Biochem J, 474(11), 1823-1836. doi: 10.1042/BCJ20160510
Xu, J., Li, K., Zhang, L., Liu, Q. Y., Huang, Y. K., Kang, Y., & Xu, C. J. (2017). Dysbiosis of gut microbiota contributes to chronic stress in endometriosis patients via activating inflammatory pathway. Reproductive and Developmental Medicine, 1(4), 221. Retrieved from https://www.repdevmed.org/article.asp?issn=2096-2924;year=2017;volume=1;issue=4;spage=221;epage=227;aulast=Xu
The effect of invalidation
We are grateful to have the author of the below study write this piece for us:
Allyson C. Bontempo, MA, Ph.D. Candidate in Health Communication, Rutgers University
“It’s all in your head.” “It’s psychosomatic.” “It’s anxiety.” “It’s depression.” “You’re overreacting.” “It’s normal.” “You just have really bad [insert specific bodily experience here].” Really, any use of the word ‘just’ or ‘only’ preceding clinicians’ verbal explanation that downplays the cause and/or severity of patients’ presumed-to-be “normal” symptom(s).
Many in the patient and health advocacy communities refer to this as ‘medical gaslighting.’ However, in the academic world—in which I wish work on this topic is read and ultimately accepted by clinicians—I refer to it more neutrally as ‘symptom invalidation.’ In essence, the patient’s perspective regarding the existence, cause, and/or severity of one or more of their symptoms is not acknowledged or deemed legitimate (i.e., is invalidated) by another.
Regardless of what it may be called and by whom, symptom invalidation is all too familiar to too many individuals. It has likely been experienced by everyone at one point or another in their life, from clinicians and/or by family, friends, significant others, coworkers, or even strangers. Though, the implications are greater when it occurs from clinicians, as they are the ones responsible for patients’ care.
It appears to be more prominent among illnesses that are diagnoses of exclusion—in other words, illnesses for which there is no precise or relatively certain means of diagnosis. Common examples include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS; e.g., Anderson et al., 2012), fibromyalgia (e.g., Sim & Madden, 2008), dysautonomia (e.g., Stiles et al., 2018), long haul COVID (e.g., Roth & Mariacarla, 2021), and, perhaps most evidently, undiagnosed illness (e.g., Nettleton, 2006).
But what about endometriosis? Endometriosis is not a diagnosis of exclusion and can more or less be ‘definitively’ diagnosed. Although no diagnosis is ever 100% certain (National Academies of Sciences, Engineering, and Medicine, 2015), it is a diagnosis that arguably can be decided on with greater certainty than many other illnesses. Furthermore, it is a disease that is roughly as common as diabetes (Centers for Disease Control and Prevention, 2021) and that falls within a specialty that, unlike most other specialties, has annual well visits built into its system (Bontempo & Mikesell, 2020). This, then, begs the question: How can the high prevalence of invalidation among individuals with endometriosis be adequately explained and justified given these unique factors that should, in theory, make misdiagnosis and invalidation less likely to occur?
Over the past five years, since I began my work on endometriosis, I have noticed that qualitative study after qualitative study has either investigated symptom invalidation or symptom invalidation has surfaced in the results of larger research investigations (for example, studies investigating the patient experience more broadly, studies investigating the healthcare experiences or needs of patients, studies investigating the diagnostic journey of patients). This work has become so expansive over the years (see Pettersson & Berterö, 2020) that I fear we’ve reached a point at which we are no longer moving the study of symptom invalidation forward in a meaningful way. Although it is important to report on the patient experience and have those stories told and heard, it is now necessary to move beyond this work so that we are no longer continuing to only report on the problem and are instead (or also) reporting on attempts at change.
Thinking about the science of behavior change, we must consider our target audience – who are those we wish to reach with this work if our goal is to effect change? Presumably those who can effect this given change. Is it clinicians? Healthcare organizations? Medical education? Policymakers? All of the above?
Regardless of the level at which our target audience is situated—whether at the interpersonal level (e.g., individual clinicians) or at the state or federal level (e.g., policymakers)—in order for others who are not impacted by endometriosis nor members of endometriosis advocacy organizations to more deeply appreciate the importance and impact of symptom invalidation in the medical encounter for patients, we must ‘meet them where they are.’ And that, I believe, is through the use of evidence in the form of aggregated, statistical data that show that symptom invalidation is ‘statistically and significantly’ associated with negative health outcomes. We know that patient-centered communication (the opposite of symptom invalidation) improves care, well-being, healthcare spending, health disparities, and is simply the ‘right’ thing to do (Epstein et al., 2010). And this, here, may be our selling point – there is something to gain for all stakeholders involved. But we haven’t gotten to this point yet.
One of the most obvious and perhaps damaging effects symptom invalidation has on patients is that, especially when there are repeated negative medical encounters of this nature and over a long span of time, it makes them feel pretty awful about themselves, even to the point where they begin to no longer trust themselves (at least until the point of diagnosis, which seems to serve to finally validate their experiences and eliminate the belief or feeling that they are ‘crazy’; e.g., see Grogan et al., 2018). Not only are they suffering physically, but they are also needlessly suffering emotionally. For this reason, this became my starting point.
With the help of several endometriosis organizations and centers that posted the study advertisement to their open social media sites, I administered a one-time, anonymous, online survey for individuals with endometriosis. Survey topics included demographic and endometriosis-related information, experiences of being invalidated in medical encounters, and several self-report questionnaires capturing ratings of their medical encounters and current psychological and physical health. The variables that were analyzed that stemmed from the questionnaires were self-esteem (Rosenberg, 1965) and depression (Radloff, 1977). Furthermore, I constructed two questionnaires specifically for this study in an attempt to capture this idea of symptom invalidation after participants were asked to refer to a particular medical encounter prior to their diagnosis in which they perceived the clinician was dismissive of their symptoms (i.e., symptom invalidation) and/or of them, personally (i.e., personalized invalidation).
I analyzed the data after a sufficient number of individuals with endometriosis had taken the survey. First, I looked at symptom invalidation (e.g., “The clinician dismissed my symptoms”). Thus, I looked at whether or not patient ratings of increased symptom invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased symptom invalidation from their clinician, is it significantly associated with reduced self-esteem as well as increased depression? The results were mixed: increased symptom invalidation was significantly associated with reduced self-esteem but not with increased depression.
Next, I looked at personalized invalidation (e.g., “The clinician dismissed me”). Thus, I looked at whether or not patient ratings of increased personalized invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased personalized invalidation from their clinician, is that increased personalized invalidation significantly associated with reduced patient self-esteem as well as increased patient depression? In contrast to my examination of symptom invalidation above, the results for personalized invalidation, here, showed that increased personalized invalidation was associated with both self-esteem and depression. First, increased personalized invalidation was associated with decreased patient self-esteem and, second—in contrast to the results of symptom invalidation—increased personalized invalidation was also significantly associated with higher patient depression.
Given the results presented in the previous paragraph, I lastly looked at whether or not a lowering of patient self-esteem is the mechanism through which increased personalized invalidation is associated with increased patient depression. In other words, I explored and tested the following question: does increased personalized invalidation from clinicians lead to lowered self-esteem ratings among patients, and does this lowered self-esteem, in turn, lead to increased depression ratings? Therefore, what I wanted to test was whether or not the lowering of patient self-esteem is a factor that may be responsible for the correlation between increased personalized invalidation and increased patient depression. The analysis I ran subsequently to test this more complex chain of associations indeed confirmed my hypothesis.
It is important to note that this study was observational (i.e., one ‘snapshot’ of the same group of patients for which different characteristics (or variables) and their associations are observed or assessed). This study was therefore not experimental (i.e., participants are assigned to one of at least two different groups on a random basis, with each group consisting of some different condition or manipulation). Therefore, we cannot make the claim that invalidating messages from clinicians causes depression by first lowering patients’ self-esteem. The significant, last analysis I conducted is helpful in supporting this claim but is not enough to actually make this claim. However, I want to emphasize that I am also not saying that invalidating messages from clinicians does not cause depression by first lowering patients’ self-esteem. This could very well be the case; however, the type of study I conducted (i.e., an observational, cross-sectional survey) was not designed to support this claim. An experimental study needs to be conducted to answer this question of whether or not one thing causes another (Kazdin, 2021).
The findings of this study are not actually ‘news,’ as it is all too commonly reported in the existing qualitative work and within health advocacy communities. However, these findings may be therapeutic to patients – they can validate patients’ experiences with these negative medical encounters and provide hope that work is indeed being conducted to bring this issue that largely lives within health advocacy communities to the academic sphere and those who really need to know this. Furthermore, these findings provide the first quantitative support via statistical data that symptom invalidation—particularly, personalized invalidation—can have a real, psychological impact on patients and therefore cannot (and should not) be ‘dismissed’ as benign. My hope is that a program of research can continue to be developed to shine light on the negative physical and psychological impact of symptom invalidation on patients and, ultimately, effect change.
References:
Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., & Cudia, J. (2012). A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education & Counseling, 86, 147-155. https://doi.org/10.1016/j.pec.2011.04.016
Centers for Disease Control and Prevention. (2020). National diabetes statistics report 2020: Estimates of diabetes and its burden in the United States. Retrieved December 4, 2020 from: https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf
Epstein, R. M., Fiscella, K., Lesser, C. S., & Stange, K. C. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs, 29, 1489-1495. https://doi.org/10.1377/hlthaff.2009.0888
Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology & Health, 33, 1-15. https://doi.org/10.1080/08870446.2018.1496252
Kazdin, A. E. (2021). Research design in clinical psychology. Cambridge, UK: Cambridge University Press.
National Academies of Sciences, Engineering, and Medicine. (2015). Improving diagnosis in health care. Washington, DC: The National Academies Press.
Nettleton, S. (2006). ‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms. Social Science & Medicine, 62, 1167-1178. https://doi.org/10.1016/j.socscimed.2005.07.030
Pettersson, A., & Berterö, C. M. (2020). How women with endometriosis experience health care encounters. Women’s Health Reports, 1, 529-542. https://doi.org/10.1089/whr.2020.0099
Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. https://doi.org/10.1177/014662167700100306
Rosenberg, M. (1965). Society and the adolescent child. Princeton, NJ: Princeton University Press.
Roth, P. H., & Mariacarla, G. B. (2021). The contested meaning of “long COVID”–Patients, doctors, and the politics of subjective evidence. Social Science & Medicine, 114619.
Sim, J., & Madden, S. (2008). Illness experience in fibromyalgia syndrome: A meta-synthesis of qualitative studies. Social Science & Medicine, 67, 57-67. https://doi.org/10.1016/j.socscimed.2008.03.003
Sowislo, J. F., & Orth, U. (2013). Does low self-esteem predict depression and anxiety? A meta-analysis of longitudinal studies. Psychological Bulletin, 139, 213.
Happy new year!
We hope that your new year brings you health and happiness. If you are still struggling to find a diagnosis, find treatment options, or want to find more resources, we hope our website can help you on your journey. Explore more at https://icarebetter.com/ and on our private Facebook group https://www.facebook.com/groups/418136991574617/ .
Understanding Endometriosis Pain: Types, Evaluation, and Treatment
Endometriosis is a chronic gynecological condition where tissue similar to the lining inside the uterus grows outside it, causing pain and potentially leading to fertility issues. The types of pain varies quite a bit because of different organ involvement, among other factors.
Table of contents
- Common Endometriosis Pain Symptoms
- Evaluation of Endometriosis Pain
- Pain Triggers in Endometriosis: Mechanisms and Treatments
- Peritoneal Prostaglandin Stimulation
- Pelvic Floor Stimulation
- Central Nervous System Sensitization
- General Holistic and Integrative Approaches
- Adenomyosis and Pain Mechanisms
- Challenges and Future Directions
- Comprehensive Care for Endometriosis Pain: Resources and Next Steps
Common Endometriosis Pain Symptoms
Here are some of the more common types of pain that endometriosis can manifest:
- Dysmenorrhea: Severe menstrual cramps that can start before and extend beyond the menstrual period.
- Non-menstrual Pelvic & Abdominal Pain: Chronic pain in the lower abdomen and pelvis, unrelated to menstruation, most often related to intestinal bloating (endo-belly).
- Dyspareunia: Pain during or after sexual intercourse.
- Dyschezia: Painful bowel movements.
- Dysuria: Painful urination, often exacerbated during menstruation.
There can be many other types of pain which vary depending on what organ might be involved. This makes the cause very difficult to diagnose correctly, and endo is often not the first condition that comes to mind. However, since it can cause many forms of pain, it must always be considered. More unusual examples include leg pain where the sciatic or femoral nerves may be involved or compressed, or pain with breathing due to diaphragmatic or even pleural (peritoneum within the chest cavity) and lung involvement.
Evaluation of Endometriosis Pain
Evaluating endometriosis pain effectively is crucial for proper diagnosis and treatment planning. The Visual Analog Scale (VAS) and the Numerical Rating Scale (NRS) are recommended for their balance of strong and weak points compared to other scales (Bourdel et al., 2021). Additionally, the Endometriosis Pain Daily Diary (EPDD), a patient-reported outcome (PRO) instrument, has been developed to assess endometriosis-related pain and its impact on patients’ lives (van Nooten et al., 2018). There are other outcomes assessment tools and it is important to use at least one of them so you can document whether is not something is actually helping or not.
Pain Triggers in Endometriosis: Mechanisms and Treatments
So, how does endo actually cause pain? It is due to a combination of overlapping nociceptive (nerve receptor activation), inflammatory, and neuropathic pain. At the end of the day, pain is pain, but this opens up a number of different treatment options that can be used together to improve quality of life. Trying to address only one or two of these causes may not get you the best results.
First, here are the most common triggers and treatment options.
Peritoneal Prostaglandin Stimulation
Peritoneal prostaglandins are inflammatory mediators that play a significant role in the pain associated with endometriosis. They are produced by endometriosis lesions and contribute to inflammation and pain by sensitizing nerve endings in the pelvic region peritoneum.
Best Endometriosis Treatments:
- NSAIDs: Nonsteroidal anti-inflammatory drugs, such as ibuprofen and naproxen, are effective in reducing inflammation and prostaglandin production, thereby alleviating pain. This does not actually treat the endometriosis. But knowing which type of NSAID is best for you is helpful for decisions.
- Hormonal Therapies: Medications like oral contraceptives, progestins, and GnRH agonists or antagonists can help reduce the menstrual cycle and thus decrease prostaglandin production. Significant risk vs. benefit considerations exist and requires expert input to get to the best choices that optimize overall outcomes. This approach, just like NSAID treatment, does not treat the endometriosis well due to relative progesterone resistance, among other factors.
- Surgical Interventions:
- Laparoscopic and Robotic Surgery: Minimally invasive procedures provide two benefits. First of all, a biopsy, which is most often obtained by surgery, is the only way to be certain that endometriosis is at least part of the reason for pain. Second, it has the potential for relatively immediate relief of pain because it removes the lesions which directly affect nociceptive stimulus and removes the chronic inflammation stimulus which affects the pelvic floor. Surgery not only improves symptoms but is also a cornerstone therapy for endometriosis.
- Hysterectomy: In severe cases, removing the uterus may be considered as a last resort to alleviate pain. In some cases, for example, the uterus is essentially encased in endometriosis and fibrosis. But otherwise, it is not necessary and is obviously inconsistent with child-bearing. However, considerations related to possible coexisting adenomyosis may impact decisions about pain relief vs fertility.
Pelvic Floor Stimulation
Pelvic floor dysfunction is a common issue in women with endometriosis, often resulting from chronic pain and muscle spasms. This can lead to additional pain and discomfort, especially during activities like intercourse, bowel movements, or urination.
Best Pelvic Pain Treatment
- Pelvic Floor Physical Therapy: Specialized physical therapy focusing on the pelvic floor can help reduce muscle spasms, improve muscle function, and alleviate pain. This may include external and internal manipulation as well as transcutaneous electrical nerve stimulation (TENS).
- Biofeedback Therapy: This technique uses electronic monitoring to help patients gain awareness and control over their pelvic floor muscles.
- Trigger Point Injections: In some cases, injections of anesthetics or steroids directly into the painful areas of the pelvic floor muscles can provide relief.
Central Nervous System Sensitization
Central nervous system (CNS) sensitization refers to the heightened sensitivity of the CNS to pain signals, often seen in chronic pain conditions, including endometriosis. This can result in exaggerated pain responses to stimuli that would not normally be painful.
Best Treatments:
- Cognitive-Behavioral Therapy (CBT): This psychological treatment helps patients manage pain by changing negative thought patterns and behaviors associated with chronic pain.
- Transcranial Direct Current Stimulation (tDCS): This non-invasive brain stimulation technique has been shown to decrease pain perception in patients with chronic pelvic pain and endometriosis (Mechsner et al., 2023).
- Pharmacological Treatments: Medications such as anticonvulsants (e.g., gabapentin, pregabalin) and antidepressants (e.g., amitriptyline) can help reduce neuropathic pain by modulating the pain pathways in the CNS.
- Interdisciplinary Approach: Combining various treatments, including medication, physical therapy, and psychological support, can be effective in managing chronic pain due to CNS sensitization (Allaire et al., 2017).
General Holistic and Integrative Approaches
- Dietary Changes:
- Anti-inflammatory Diets: Foods rich in fruits, vegetables, lean proteins, and omega-3 fatty acids, can help reduce inflammation and pain. You should especially consider brassica veggies, leafy greens, berries, fatty fish like salmon, and nuts.
- Avoiding Certain Foods: Reducing intake of processed foods, caffeine, alcohol, and high-fat meats may help alleviate symptoms.
- Acupuncture and Herbal Medicine:
- Acupuncture: This Traditional Chinese medicine technique involves inserting thin needles into specific points on the body to relieve pain. Whether you believe it is related to meridians or nerve pathways, we know it is effective in many people.
- Herbal Treatments: Herbs like turmeric (curcumin), ginger, and chamomile have anti-inflammatory properties and can be used as supplements or in teas.
- Endocannabinoids: The “internal” endocannabinoid system (ECS) has emerged as a significant pharmacological target for managing endometriosis-related pain (Bouaziz et al., 2017).
- Cannabis: “External” use of CBD interfaces with the internal system because the target receptors are shared. In addition, under expert guidance and where legal, THC may also help. However, the latter has psychoactive effects which may not be desired.
- Mind-Body Techniques:
- Yoga: Incorporates physical postures, breathing exercises, and meditation to reduce stress and improve flexibility and pain management.
- Meditation and Mindfulness: Techniques that focus on reducing stress and improving emotional well-being, can indirectly help manage chronic pain.
- Cognitive-Behavioral Therapy (CBT): This specific psychological treatment helps patients manage pain by changing negative thought patterns and behaviors.
- Supplements and Natural Remedies:
- Omega-3 Fatty Acids: Found in fish oil supplements, these can help reduce inflammation.
- Vitamin D: Supplementing with vitamin D can improve immune function and potentially reduce endometriosis symptoms.
- Magnesium: This mineral helps relax muscles and reduces cramping and pain.
- Lifestyle Modifications:
- Regular Exercise: Moderate physical activity, such as walking, swimming, or yoga, can help reduce pain by releasing endorphins, the body’s natural painkillers.
- Stress Management: Techniques like deep breathing, progressive muscle relaxation, and guided imagery can help manage stress, which can exacerbate pain.
Adenomyosis and Pain Mechanisms
Adenomyosis is a condition, highly related to endometriosis, in which the inner lining of the uterus (endometrium) breaks through or is transported into the muscle wall of the uterus (myometrium). This can cause significant pain and heavy menstrual bleeding. The mechanisms through which adenomyosis causes pain overlap with endo but have some additional separate issues.
- Increased Nerve Fiber Density: Studies have shown that increased nerve fiber density in adenomyotic tissue is correlated with more severe pain. This suggests that the proliferation of nerve fibers within the uterine muscle layer is a significant factor in the pain experienced by patients with adenomyosis (Lertvikool et al., 2014).
- Inflammation and Prostaglandin Release: Adenomyosis leads to chronic inflammation within the uterine muscle, resulting in increased levels of inflammatory mediators like prostaglandins. These mediators cause painful uterine contractions and contribute to the severe pelvic pain associated with the condition (MacGregor et al., 2023).
- Myometrial Invasion: Adenomyotic lesions invade the myometrium through processes such as epithelial-mesenchymal transition, which can cause pain through abnormal uterine bleeding and severe pelvic discomfort (Tan et al., 2019). There may also be transportation via lymphatics, but the end result is the same.
- Abnormal Uterine Bleeding: The disruption of normal uterine architecture leads to abnormal bleeding patterns, which can exacerbate pain and contribute to dysmenorrhea (painful periods) (López et al., 2020).
Best Treatments for Adenomyosis-Associated Pain
To address the pain associated with adenomyosis, several treatment strategies can be employed:
- Hormonal Treatments:
- Gonadotropin-Releasing Hormone (GnRH) Agonists and Antagonists: These drugs reduce estrogen levels, which can shrink adenomyotic lesions and reduce pain.
- Progestins: Hormonal medications like Dienogest (DNG) can effectively manage pain by suppressing the growth of adenomyotic tissue, though they may be associated with side effects such as abnormal uterine bleeding (Kobayashi, 2023). There is some developing data that natural compounded progesterone works better than synthetic progestins.
- Levonorgestrel-Releasing Intrauterine System (LNG-IUS): This device releases a small amount of progestin directly into the uterus, reducing pain and bleeding by suppressing the endometrial tissue growth (Choi et al., 2010).
- Non-Hormonal Treatments:
- NSAIDs: Nonsteroidal anti-inflammatory drugs can reduce pain by decreasing inflammation and prostaglandin production.
- Acupuncture and Herbal Remedies: Traditional Chinese Medicine treatments such as acupuncture and herbal formulas like Shaoyao-Gancao Decoction (SGD) have shown promise in reducing pain by targeting inflammation and muscle relaxation (Guan et al., 2014).
- Surgical Interventions:
- Laparoscopic and Robotic Surgery: Minimally invasive procedures can remove some adenomyotic tissue which may lead to some relief but may impact fertility if the uterine cavity is entered. Also, since adenomyomas are now considered to be part of diffuse adenomyosis, removing all of it is highly problematic if not impossible.
- Hysterectomy: In severe cases, removing the uterus may be considered as a last resort to alleviate pain and improve the quality of life for patients who do not respond to other treatments. Hysterectomy is not always required to effectively treat endometriosis pain. However, if adenomyosis is also present, which is hard to accurately diagnose with imaging or examination, consideration should be given for a hysterectomy if childbearing is complete.
Challenges and Future Directions
Communication with your doctor(s) about endometriosis pain can be challenging due to the subjective nature of pain and the complexity of the condition. Improved language and tools have been suggested to enhance patient-practitioner communication (Bullo & Weckesser, 2021). Additionally, ongoing research into genetic correlations and new treatment targets, such as the P2X3 receptor and brain-derived neurotrophic factor (BDNF), is crucial for developing more effective treatments (Ding et al., 2018). The good news? There is a lot of research going on regarding chronic pain and it’s not limited to endometriosis.
Comprehensive Care for Endometriosis Pain: Resources and Next Steps
Endometriosis pain is a multifactorial issue requiring a comprehensive evaluation and a multifaceted treatment approach. Combining medical, surgical, and holistic treatments can provide the most effective relief and improve the quality of life. For further reading and detailed studies, please refer to the linked references in this article.
What type of endo pain do you have? And how would you describe it? If you want to find an experienced endometriosis specialist or a different kind of endo provider near you, you can do so on our platform, iCareBetter.
References and More Information:
- Bourdel et al., 2021
- van Nooten et al., 2018
- Wang et al., 2019
- Bouaziz et al., 2017
- Bullo & Weckesser, 2021
- Ding et al., 2018
Updated Post: July 29, 2024
Happy Holidays!
In the midst of several different holiday celebrations, people with endometriosis can often struggle to balance activities and symptoms. Grogan, Turley, and Cole (2018) interviewed people with endometriosis and they noted that:
“Participants spoke about their lives being a constant struggle, where they tried to maintain their personal and working lives whilst dealing with long-term pain. Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals. Coping strategies included avoidance of social events to conserve energy (self-pacing), and avoiding taking painkillers to retain alertness. Women did not feel able to be honest with family and friends about their symptoms, and felt socially isolated and misunderstood.” The researchers noted that “so many women suffer in silence”.
In the midst of busyness, take time to care for yourself and enjoy what matters to you most.
Reference
Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis. Psychology & health, 33(11), 1364-1378. Retireved from https://doi.org/10.1080/08870446.2018.1496252
