Endometriosis and rheumatoid arthritis
A couple of recent studies have indicated that those with endometriosis might have a higher risk of rheumatoid arthritis (RA) (Xue et al., 2021; Chen et al., 2021). One study even suggested “in the clinical management of patients with RA, rheumatologists should be especially mindful of the possibility of underlying endometriosis” (Xue et al., 2021). This is echoed by Shigesi et al. (2019) who states that “the observed associations between endometriosis and autoimmune diseases suggest that clinicians need to be aware of the potential coexistence of endometriosis and autoimmune diseases when either is diagnosed.”
Harris et al. (2016) cautions that “it remains to be understood whether and how endometriosis itself, or hysterectomy or other factors associated with endometriosis, is related to risk of…RA.” Alpízar-Rodríguez et al. (2017) found that “laparoscopically confirmed endometriosis was found to be significantly associated with subsequent RA…However, this association was attenuated after adjustment by hysterectomy and oophorectomy, suggesting a possible confounding effect by surgically induced menopause.” This effect of menopause on RA has been noted before- “the peak incidence in females coincides with menopause when the ovarian production of sex hormones drops markedly” (Islander et al., 2011). The effect of female hormones has been noted to influence RA symptoms as well. For instance, one study noted “decreased joint pain during times when estrogen and progesterone levels are high” (Costenbader et al., 2008). Estrogen can have “both stimulatory and inhibitory effects on the immune system” and it has been noted that “the rapid decline in ovarian function and in circulating oestrogens at menopause is associated with spontaneous increases in pro-inflammatory cytokines” (Alpízar-Rodríguez et al., 2017). Part of the effect may be seen in the estrogen receptors, with an increase of ER-β over ER-α receptors in RA synovial tissue (Alpízar-Rodríguez et al., 2017). This increased expression of ER-β receptors is also seen in endometriosis lesions (which can cause increased inflammation) (Bulun et al., 2012).
References
Alpízar-Rodríguez, D., Pluchino, N., Canny, G., Gabay, C., & Finckh, A. (2017). The role of female hormonal factors in the development of rheumatoid arthritis. Rheumatology, 56(8), 1254-1263. https://doi.org/10.1093/rheumatology/kew318
Bulun, S. E., Monsavais, D., Pavone, M. E., Dyson, M., Xue, Q., Attar, E., … & Su, E. J. (2012, January). Role of estrogen receptor-β in endometriosis. In Seminars in reproductive medicine (Vol. 30, No. 01, pp. 39-45). Thieme Medical Publishers. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034571/…
Chen, S. F., Yang, Y. C., Hsu, C. Y., & Shen, Y. C. (2021). Risk of Rheumatoid Arthritis in Patients with Endometriosis: A Nationwide Population-Based Cohort Study. Journal of Women’s Health, 30(8), 1160-1164. https://doi.org/10.1089/jwh.2020.8431
Costenbader, K. H., & Manson, J. E. (2008). Do female hormones affect the onset or severity of rheumatoid arthritis?. Arthritis Care & Research, 59(3), 299-301. https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.23324
Harris, H. R., Costenbader, K. H., Mu, F., Kvaskoff, M., Malspeis, S., Karlson, E. W., & Missmer, S. A. (2016). Endometriosis and the risks of systemic lupus erythematosus and rheumatoid arthritis in the Nurses’ Health Study II. Annals of the rheumatic diseases, 75(7), 1279-1284. http://dx.doi.org/10.1136/annrheumdis-2015-207704
Islander, U., Jochems, C., Lagerquist, M. K., Forsblad-d’Elia, H., & Carlsten, H. (2011). Estrogens in rheumatoid arthritis; the immune system and bone. Molecular and cellular endocrinology, 335(1), 14-29. DOI: 10.1016/j.mce.2010.05.018
Xue, Y. H., You, L. T., Ting, H. F., Chen, Y. W., Sheng, Z. Y., Xie, Y. D., … & Wei, J. C. C. (2021). Increased risk of rheumatoid arthritis among patients with endometriosis: a nationwide population-based cohort study. Rheumatology, 60(7), 3326-3333. https://doi.org/10.1093/rheumatology/keaa784
Shigesi, N., Kvaskoff, M., Kirtley, S., Feng, Q., Fang, H., Knight, J. C., … & Becker, C. M. (2019). The association between endometriosis and autoimmune diseases: a systematic review and meta-analysis. Human reproduction update, 25(4), 486-503. https://doi.org/10.1093/humupd/dmz014
Endometriosis and Constipation
Endometriosis is associated with several “digestive complaints, including abdominal pain, bloating, diarrhea, constipation, rectal bleeding, and dyschezia” (Raimondo et al., 2022). Raimondo et al. (2022) reports that “chronic constipation (CC) in women with endometriosis varies from 12% to 85%” and results from multiple causes such as inflammation, scar tissue, and damage to pelvic autonomic nerves.
Raimondo et al. (2022) reports that those “with endometriosis are more likely to have pelvic floor muscle dysfunctions” and found by using ultrasounds that hypertonic (too much muscle tone) pelvic floor muscles were found more in those with chronic constipation than those without it. While treating chronic constipation can be challenging, the study states that “specific interventions targeting the pelvic floor hypertonia, such as physiotherapy” might be beneficial.
Another study reports that digestive symptoms such as constipation are due more to the inflammation irritating the digestive tract than to lesions infiltrating the bowel itself (Roman et al., 2012). However, those “presenting with rectal endometriosis were more likely to present cyclic defecation pain (67.9%), cyclic constipation (54.7%) and a significantly longer stool evacuation time, although these complaints were also frequent in the other two groups (38.1 and 33.3% in women with Stage 1 endometriosis and 42.9 and 26.2% in women with deep endometriosis without digestive involvement, respectively)” (Roman et al., 2012). A referral to a gastroenterologist may help improve symptoms, but part of the treatment might include surgery to remove lesions that may be affecting the bowel (Meurs‐Szojda et al., 2011).
For more information on bowel symptoms: https://icarebetter.com/bowel-gi-endometriosis/
References
Meurs‐Szojda, M. M., Mijatovic, V., Felt‐Bersma, R. J. F., & Hompes, P. G. A. (2011). Irritable bowel syndrome and chronic constipation in patients with endometriosis. Colorectal Disease, 13(1), 67-71. https://doi.org/10.1111/j.1463-1318.2009.02055.x
Raimondo, D., Cocchi, L., Raffone, A., Del Forno, S., Iodice, R., Maletta, M., … & Seracchioli, R. (2022). Pelvic floor dysfunction at transperineal ultrasound and chronic constipation in women with endometriosis. International Journal of Gynecology & Obstetrics. https://doi.org/10.1002/ijgo.14088
Roman, H., Ness, J., Suciu, N., Bridoux, V., Gourcerol, G., Leroi, A. M., … & Savoye, G. (2012). Are digestive symptoms in women presenting with pelvic endometriosis specific to lesion localizations? A preliminary prospective study. Human reproduction, 27(12), 3440-3449. doi: 10.1093/humrep/des322
Endometriosis and Heart Disease
There is not much literature about endometriosis and heart disease. Marchandot et al. (2022) reports that there are some overlaps in contributors to both heart disease and endometriosis, such as “chronic inflammation, enhanced oxidative stress, endothelial dysfunction, and cellular proliferation.” Some research indicates “increased arterial stiffness and impaired flow-mediated dilation, a surrogate marker of endothelial dysfunction potentially reversible after surgical treatment, were associated with endometriosis” (Marchandot et al., 2022).
Some risk factors for heart disease have been found in those with endometriosis, including hypertension, dyslipidemia, and obesity. Research suggests that the link between hypertension and endometriosis may be because of certain treatments for endometriosis, namely from early hysterectomy/oophorectomy and from use of NSAIDs (Marchandot et al., 2022). In fact, “hysterectomy in women aged 50 years or younger has been associated with a significantly increased risk of ischaemic heart disease, with oophorectomy linked to an increased risk of both [coronary artery disease] and stroke” (Marchandot et al., 2022). Shuster et al. (2010) add that “regardless of the cause…women who experience premature menopause (before age 40 years) or early menopause (between ages 40 and 45 years) experience an increased risk of overall mortality, cardiovascular diseases, neurological diseases, psychiatric diseases, osteoporosis, and other sequelae.” High cholesterol has also been associated with endometriosis- a 25% increased risk in those with endometriosis (Marchandot et al., 2022). Marchandot et al. (2022) also reports that “the role of hormonal treatment strategies for endometriosis, including combined oral contraceptives, progestins, and gonadotrophin-releasing hormone (GnRH) analogues, has been highly questioned regarding a potentially enhanced lipid profile, cardiovascular risk profile, and weight gain.”
Marchandot et al. (2022) urge caution in interpreting results as “only small associations between endometriosis and CVD have been reported in the literature” and that current studies have been limited “by small sample sizes, observational designs, and the specific characteristics of the population from which the samples are derived (high-income countries, cohort study of hospital-based healthcare workers, primarily Caucasian Europeans, etc.).” They also state that endometriosis treatments influence cardiovascular risk factors (“the confounding influence of hormonal, non-hormonal, and pain-related interventions further complicate the cause-and-effect relationship in CV endpoints”) (Marchandot et al. 2022).
References
Marchandot, B., Curtiaud, A., Matsushita, K., Trimaille, A., Host, A., Faller, E., … & Morel, O. (2022). Endometriosis and cardiovascular disease. European Heart Journal Open, 2(1), oeac001. https://doi.org/10.1093/ehjopen/oeac001
Shuster, L. T., Rhodes, D. J., Gostout, B. S., Grossardt, B. R., & Rocca, W. A. (2010). Premature menopause or early menopause: long-term health consequences. Maturitas, 65(2), 161-166. doi: 10.1016/j.maturitas.2009.08.003
Fatigue, rest, and pacing
During endometriosis awareness month, the most interacted with post on our Facebook page was about fatigue- which points to how significant it impacts those with endometriosis. Fatigue and pain often go hand in hand- with one aggravating the other. One concept to help prevent flares of pain and fatigue is pacing.
Pacing is about adjusting your activities to your body’s current needs and finding the balance between activity and rest. Pacing doesn’t mean you accomplish less, rather it helps you accomplish your goals while reducing the chance of a pain/fatigue flare. We are familiar with the concept of pacing in running and other forms of exercise:
“Pacing is essentially a strategy that you use to distribute your energy throughout your entire bout of physical activity. Being cognitively aware of how much you are physically exerting yourself will keep you in touch with signs of fatigue and allow better control of performance. Properly controlling your pace during your physical activity can help you prevent working so hard that you’re unable to complete your training in the next session. Pacing allows you to avoid injury…”
(MacPherson, n.d.)
Pacing, according to one study’s participants, can include “breaking down tasks, saying ‘no’, being kind to themselves, using rest breaks, doing something each day, developing a structure and gradually building up activities” (Antcliff et al., 2021). The same study found that some of the main barriers to pacing activities were “wanting to complete tasks, or not wanting to delegate or be perceived as lazy” (Antcliff et al., 2021). Sometimes life’s demands make it difficult- especially with an illness not many people understand. The study had participants include goals such as “socialise with friends, try varying exercises, protect time for hobbies and relaxation, and gradually try activities they had been avoiding due to symptoms” (Antcliff et al., 2021). Sometimes when we feel better, we push ourselves too hard for too long to make up for when we can’t perform our usual activities. Feinberg and Feinberg (n.d.) report that with pacing “you break an activity up into active and rest periods” and that “rest periods are taken before significant increases in pain levels occur.” Pacing may mean that if you have work or an appointment scheduled, then you may need to keep your schedule clear the day before and/or after to be able to recover. It may mean only doing one load of laundry that day. It may mean protecting time for activities that feed your spirit (reading, outdoor time, time with supportive friends or family, etc.).
In the spirit of pacing and taking rest when needed, the admins of our Facebook page will be taking a week off April 2-9, 2022. During this week, our Facebook page will be on pause. This means that it will be read only during that week, so it won’t let you comment, react, post, or request to join. Don’t worry, it’ll go back to usual after that week. After 9 years of continuous volunteer work by the admins and moderators, it’s about time for a break.
See more about fatigue with endometriosis: https://icarebetter.com/fatigue-in-endometriosis/?doing_wp_cron=1594748400.8231060504913330078125
endometriosis signs and symptoms
References
Antcliff, D., Keenan, A. M., Keeley, P., Woby, S., & McGowan, L. (2021). “Pacing does help you get your life back”: The acceptability of a newly developed activity pacing framework for chronic pain/fatigue. Musculoskeletal care. https://onlinelibrary.wiley.com/doi/full/10.1002/msc.1557
Feinberg & Feinberg. (n.d.). Pacing means moving ahead. Retrieved from http://www.cfsselfhelp.org/library/pacing-means-moving-ahead-and-not-falling-behind#:~:text=Pacing%20is%20a%20tool%20that,physical%20activity%20because%20it%20hurts.
MacPherson. (n.d.). How to properly pace yourself during exercise (and why it matters) Retrieved from https://www.vitacost.com/blog/how-to-pace-yourself-to-improve-exercise/
Endometriosis Awareness Week 4
Endometriosis awareness month is still going! As it is our last newsletter for March, we have a bunch of more shareable information, including some myth-busters. Remember, a 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!
Food is important in our lives! There is no one specific diet for endometriosis. No food, diet, or supplement will “cure” endometriosis, but it can help manage symptoms and is great for overall health and well-being. Your diet needs to be individualized to your specific needs, and it can take quite a bit of experimentation to find what works for you. For more info on diet, see: https://icarebetter.com/diet-and-nutrition/
With the goal to improve symptom management and to feel better overall, some alternative and complementary therapies can be helpful. For more info, see: https://icarebetter.com/alternative-and-complementary-therapies/
“Hysterectomy is a definitive cure for endometriosis.” Myth-buster: Endometriosis can still persist after a hysterectomy. (A hysterectomy can hep related conditions that involve the uterus however.) https://icarebetter.com/myths-and-misinformation/
“Endo will go away with menopause.” Myth-buster: Endometriosis can still persist after menopause. https://icarebetter.com/myths-and-misinformation/
“Getting pregnant will help.” Myth-buster: Pregnancy is not a cure or treatment for endometriosis. The fact that endometriosis is one of the leading causes of infertility makes this all the more painful. https://icarebetter.com/myths-and-misinformation/
“You’re too young to have endometriosis. ” Myth-buster: Endometriosis can be found in teens and can be found in “advanced” stages. https://icarebetter.com/myths-and-misinformation/
“There wasn’t much endo there so it must not be causing your symptoms.” Or “you only have minimal endometriosis so it’s not affecting your fertility.” Myth-buster: Minimal endometriosis can cause severe symptoms and can affect fertility. https://icarebetter.com/pain-associated-with-minimal-endometriosis/ and https://icarebetter.com/myths-and-misinformation/
“Your symptoms can’t be that bad- it’s just in your head.” Myth-buster: Endometriosis can cause significant symptoms based on very real pathophysiology. https://icarebetter.com/myths-and-misinformation/
Early diagnosis and effective treatment can lead to improved quality of life and lessen the detrimental effects from long term pain and suffering. Increasing awareness of symptoms and best practice treatment is important!
Endometriosis awareness does not end in March for those of us who have suffered from it. If we can each reach out to teach another, then maybe that other person won’t have to go through what we did to not only find a diagnosis but find effective treatment. Please feel free to share the resources provided on our website. (You can further support our work here.)
Endometriosis Awareness Week 3
Endometriosis awareness month is still going! 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!
Infertility is strongly associated with endometriosis. https://icarebetter.com/fertility-issues/ and https://icarebetter.com/infertility-links-2/
Endometriosis is often found with other conditions that can have similar symptoms. For more info, see: https://icarebetter.com/related-conditions/
Excision is the surgical removal of tissue by cutting out. It differs from ablation/laserization/burning/vaporizing, which are techniques that use a heat source to destroy tissue. Excision allows for a biopsies to be sent to a pathologist for confirmation, and it better ensures that all of the endometriosis lesion is removed. With ablation, it may or may not reach deep enough to destroy all the endometriosis lesion and it does not allow for pathology confirmation. While ablation may work for superficial endometriosis, it leaves the unknown of whether all of the lesion was truly destroyed. For more info, see: https://icarebetter.com/why-excision-is-recommended/ and https://icarebetter.com/why-see-a-specialist/
Hormonal treatments, while they can relieve symptoms, do not get rid of the disease itself. Symptoms often return rapidly once medications are stopped. Hormonal medication may not stop the progression of disease- this is particularly important where the ureters and/or bowel are involved. Endometriosis lesions are different from normal endometrium (the lining of the uterus), therefore some people’s endometriosis does not respond to progestin therapy. For more info, see: https://icarebetter.com/hormonal-medications/
Different medications can be used to help alleviate chronic pelvic pain and other related conditions. Alleviate does not necessarily mean eliminate. As long as endometriosis lesions are present, irritation to muscles and nerves that can cause pain will continue. Addressing the underlying problem is important for long term goals. It is also important to address other pain generators, such as pelvic floor dysfunction or interstitial cystitis/bladder pain syndrome. For more info, see: https://icarebetter.com/pain-medications/ ; https://icarebetter.com/a-quick-guide-to-pain-control/ ; https://icarebetter.com/pain-management/
Endometriosis can cause problems with the surrounding muscles and soft tissues. Pelvic floor spasms, tight muscles, other myofascial changes, and more will often contribute to symptoms (such as pain with defecation or pain with sex). These muscular and soft tissue changes can benefit from pelvic physical therapy. However, appropriate therapy for endometriosis associated problems requires a specific skill set by your physical therapist. For more info, see: https://icarebetter.com/pelvic-physical-therapy/ and https://icarebetter.com/physical-therapy-resources/
Symptoms from endometriosis, such as pain and fatigue, can impact an individual’s quality of life significantly. This can affect our mental health. Proper treatment for the underlying cause of symptoms can help, but years of symptoms, such as pain or infertility, can create a toll. Seeking care for your mental health is not a sign that your endo is “all in your head”- rather it is another tool to help your overall well-being. For more info, see: https://icarebetter.com/the-importance-of-mental-health-support-in-endometriosis-2/ ; https://icarebetter.com/mental-health-overview/ ; https://icarebetter.com/choosing-the-right-mental-health-therapist-2/
Endometriosis Awareness Week 2
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!
For more information, see:
Ultrasounds: https://icarebetter.com/ultrasound-use-with-endometriosis/
MRI’s: https://icarebetter.com/magnetic-resonance-imaging-mris-and-endometriosis/
Negative scans do NOT rule out endometriosis: https://icarebetter.com/but-your-tests-are-all-negative/
While researchers are working to create a reliable test and there are promising ones in development, at this point there are none widely available. Also, response or no response to hormonal medications has NOT been proven to be reliable to diagnose endometriosis. For more info, see: https://icarebetter.com/labwork-and-blood-tests/ and https://icarebetter.com/but-your-tests-are-all-negative/
When performing surgery, it is important for the surgeon to be familiar with both all the appearances and indications of endometriosis as well as all the locations it might be found. For more info, see: https://icarebetter.com/the-many-appearances-of-endo/
Endometriosis can be found in many places both in the pelvis and outside of the pelvis. For more info, see: https://icarebetter.com/locations-of-endometriosis/ and https://icarebetter.com/weird-places-endometriosis-has-been-found/
Endometriosis can cause significant pain even if surgery finds “minimal” lesions. The pain can be from inflammation, nerve irritation, and changes in the myofascia. For more info, see: https://icarebetter.com/pain-its-complicated/ ; https://icarebetter.com/what-influences-pain-levels/ ; https://icarebetter.com/pain-associated-with-minimal-endometriosis/
Fatigue can significantly impact those with endometriosis. This fatigue can come from inflammation, which can lead to pain which can lead to sleep problems, stress, and depression….which can lead to more fatigue. See more at: https://icarebetter.com/fast-facts-fatigue-with-endometriosis/
Endometriosis patients are often diagnosed with irritable bowel syndrome (IBS). While there can be an overlap in the two conditions, endometriosis can cause symptoms similar to IBS. For more info, see: https://icarebetter.com/bowel-gi-endometriosis/
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/
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