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Endometriosis: A majorly underdiagnosed condition leaving women experiencing pain “worse than childbirth”

Endometriosis is a chronic gynecological condition that affects 1 in 10 women of reproductive age worldwide [1]. It can manifest with the first menstruation and last until menopause. As March has been established by many countries as Endometriosis Awareness Month, let’s have a look at a condition that has been characterized by affected women as ‘more painful than childbirth’.

The name of the condition comes from the word endometrium, the mucous membrane that covers the inner cavity of the uterus [2]. Each month, the endometrium grows in preparation for pregnancy and when no pregnancy occurs, it sheds during menstruation. Endometriosis happens when endometrial tissue develops outside the uterus. This tissue, no matter where it spreads in the body, breaks down and bleeds every month when pregnancy is not achieved due to the hormones released in the body [3]. Consequently, when endometrial tissue has been formed in organs outside the uterus, blood is trapped causing the areas around the tissue to become inflamed or swollen. The most common places where endometriosis occurs are anywhere on the pelvic organs such as on the ovaries, fallopian tubes, and behind the uterus. Less common sites are on the bowel and the bladder, while in rare cases, it occurs inside organs, for example inside the bladder or in the lungs [4].

Symptoms of endometriosis

The symptoms of endometriosis vary in intensity. Although some women might have no symptoms, others have constant, intense, and debilitating pain, significantly affecting their daily life, and physical and mental health [4]. The degree of pain experienced by women with endometriosis often correlates with their menstrual cycle, intensifying during menstruation. The most common symptom of endometriosis is pelvic pain [5, 6]. Other symptoms include severe cramping during menstruation, and pain during or after intercourse. Endometriosis may also present with symptoms specific to the affected organ. For example, if endometriosis is in the urinary tract, the patient may experience blood or pain when urinating.

Endometriosis significantly affects fertility, since it is estimated that 30-50% of women with endometriosis experience difficulty in achieving pregnancy [7]. Additionally, women with endometriosis have an increased chance of experiencing complications, including miscarriage, during pregnancy [8].

Endometriosis can affect female fertility in several ways, including:

  • adhesions that can block the fallopian tubes
  • inflammation of the pelvic organs
  • hormonal changes
  • alteration in the oocyte quality
  • implantation difficulty

Early intervention for mild or moderate endometriosis can often reverse infertility before the condition significantly influences the affected tissues. However, in cases where infertility is irreversible, Assisted Reproductive Technology (ART) could help facilitate conception [9].

Causes of endometriosis

There are many theories about what causes endometriosis, however, none of them fully explain the mechanisms that lead to it. It has been observed that endometriosis often occurs among women of the same family. Genetic studies have shown an increased frequency of the condition in close relatives, suggesting a possible multifactorial and polygenic mode of inheritance [10]. Another theory on the cause of endometriosis that was first promoted in the 1920s and has since been neither proven nor disproven is retrograde menstruation, where menstrual blood containing endometrial cells flows from the fallopian tubes back into the pelvic cavity. The endometrial cells then implant themselves somewhere in the body and grow [3]. Other possible causes include environmental factors, immune system dysfunction, or a combination of causes.

Diagnosis

Despite the high incidence of endometriosis, it takes an average of 7.5 years to reach a diagnosis [11]. Many times, women suffering from endometriosis are misdiagnosed with ovarian cysts, pelvic inflammatory disease, or irritable bowel syndrome, resulting in the delay of effective clinical management. To diagnose endometriosis, it is essential to perform histological verification by laparoscopy in addition to considering medical history [12].

Management

Women have been suffering for centuries from endometriosis yet there is no cure, mainly due to the poor understanding of the condition. Treatment focuses on easing symptoms, but options have been the same for decades as there have not been any breakthroughs in treatment or management. While in the past hysterectomy was a common treatment for endometriosis, nowadays it is no longer preferred, since it eliminates a woman’s ability to conceive. Further, the invasive treatment may not treat the condition with symptoms and pain persisting in some cases [13].

Anti-inflammatory drugs and painkillers are usually prescribed to help minimize the pain [1]. The woman’s age, the symptoms she is experiencing, any previous treatments, and possible plans for pregnancy in the near future are considered in order to plan appropriate clinical management. For women not trying to get pregnant or nearing menopause, or for women with mild symptoms, management includes hormone therapy such as birth control pills or hormonal intrauterine devices. Surgical intervention to remove endometrial tissue, adhesions, or scar tissue is an option when symptoms worsen or persist. Surgical intervention is also a treatment option for women experiencing infertility due to endometriosis and wishing to conceive along with ART techniques such as intrauterine insemination and in vitro fertilization (IVF).

Clinical trials are vital to investigate the management of infertility in women with endometriosis. Recent successful studies include the use of dichloroacetate that reduced the size of endometriosis lesions [14] and the use of dichloroacetate in combination with bevacizumab which successfully relieved the patient’s symptoms, slowed the endometriosis course, and enhanced fertility outcomes [15]. Other studies investigated alternative ways to manage the long-term pain women with endometriosis experience. A study in New Zealand showed that the use of medical cannabis can significantly reduce pain and improve sleep [16]. In the same study, over 80% of the participants reduced their daily medication intake and 59% of them completely stopped taking some of their medications, which included opioids.

Countries differ in their approach in managing endometriosis. For example, in Australia, a drug that contains active substances of relugolix, estradiol and norethisterone acetate, which has been used for years as a treatment for uterine fibroids, has been approved for treating endometriosis [17]. Despite the limitations and slow progress in the management of endometriosis throughout the years, the latest developments have provided significant progress in the study of endometriosis.

Mental toll of endometriosis

Other than the physiological symptoms, endometriosis takes a serious toll on the mental health of women and affects their quality of life. This has been suggested by various studies that showed a correlation between endometriosis and mood disorders. The most common psychological symptoms include depression, anxiety, and increased perceived stress [18, 19]. Importantly, it has been observed that women with endometriosis experience sexual dysfunction and low sexual satisfaction which adds an additional burden to their mental health [20]. Additionally, younger women with endometriosis-associated infertility experience worry and feelings of inadequacy [21]. Endometriosis does not only affect the women who suffer from the condition, but it also increases their partners’ psychological distress. Mental support and psychological assessment should not be overlooked, but rather be considered an essential part of the clinical management of endometriosis. 

Conclusion

In many countries, endometriosis has a similar prevalence as other well-managed conditions such as diabetes, yet healthcare institutes significantly underfund the research of endometriosis, making the path to understanding the condition difficult and time-consuming. This is one of the reasons why no major breakthroughs have been made for faster diagnosis, better treatment, or understanding the cause of endometriosis [22]. Delayed diagnosis makes adequate clinical management difficult and can lead to long-term consequences such as loss of fertility and permanent damage to multiple organs. The need for early and accurate diagnosis is evident, as is finding an effective treatment that will address each woman’s clinical needs.

References

[1] World Health Organization. “Endometriosis.” World Health Organization, World Health Organization, 24 Mar. 2023, www.who.int/news-room/fact-sheets/detail/endometriosis.

[2] John Hopkins Medicine. “Endometriosis.” John Hopkins Medicine, 2019, www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis.

[3] ‌Endometriosis UK. “What Is Endometriosis? | Endometriosis UK.” www.endometriosis-Uk.org, 2022, www.endometriosis-uk.org/what-endometriosis.

[4] Endometriosis.org. “About endometriosis” Endometriosis.org. https://endometriosis.org/endometriosis/.

[5] “Endometriosis.” www.acog.org, Feb. 2021, https://www.acog.org/womens-health/faqs/endometriosis.

[6] NHS. “Endometriosis.” NHS, 5 Sept. 2022, https://www.nhs.uk/conditions/endometriosis/.

[7] ‌“Endometriosis: Does It Cause Infertility?” www.reproductivefacts.org, http://www.reproductivefacts.org/news-and-publications/fact-sheets-and-infographics/endometriosis-does-it-cause-infertility/.

[8] Burgess, L. “What to know about endometriosis during pregnancy.”  www.medicalnewstoday.com, 3 May 2022, https://www.medicalnewstoday.com/articles/322516.

[9] Somigliana, Edgardo, et al.  “Endometriosis and IVF treatment outcomes: unpacking the process.” Reproductive Biology and Endocrinology, vol. 21, no. 1, 7 Nov. 2023, https://rbej.biomedcentral.com/articles/10.1186/s12958-023-01157-8.

[10] Hansen, Keith, A., & Eyster, Kathleen, M.  Genetics and Genomics of Endometriosis. Clinical Obstetrics and Gynecology, vol. 53, no. 2, June 2010, 403–412. https://doi.org/10.1097/grf.0b013e3181db7ca1.

[11] “10 Things You Should Know about Endometriosis.” RCOG, www.rcog.org.uk/news/10-things-you-should-know-about-endometriosis/.

[12] Koninckx, Phillipe, R, et al. (2021). “The epidemiology of endometriosis is poorly known as the pathophysiology and diagnosis are unclear.” Best Practice & Research in Clinical Obstetrics & Gynaecology, 71, 14–26, March 2021. https://doi.org/10.1016/j.bpobgyn.2020.08.005.

[13] Rizk, B, et al. Recurrence of endometriosis after hysterectomy.” Facts, views & vision in ObGyn vol. 6,4 (2014): 219-27. https://pubmed.ncbi.nlm.nih.gov/25593697/.

[14] Horne, Andrew W et al. “Repurposing dichloroacetate for the treatment of women with endometriosis.” Proceedings of the National Academy of Sciences of the United States of America vol. 116,51 (2019): 25389-25391. doi:10.1073/pnas.1916144116. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6925989/.

[15] Mehakar, Saurabh, et al. (2023). “Case Report: Implication of antiangiogenic therapy (bevacizumab) along with dichloroacetate therapy on endometriosis patient seeking infertility treatment.” F1000research.com, 12:1169 (19 Sept. 2023), https://doi.org/10.12688/f1000research.141510.1.

[16] Armour, Mike et al. “Illicit Cannabis Usage as a Management Strategy in New Zealand Women with Endometriosis: An Online Survey.” Journal of women’s health (2002) vol. 30, 10 (2021): 1485-1492. doi:10.1089/jwh.2020.8668, https://pubmed.ncbi.nlm.nih.gov/33275491/.

[17] “Ryeqo Approved for Endometriosis – Healthed.” Healthed, 28 Feb. 2024, https://www.healthed.com.au/clinical_articles/what-is-ryeqo-the-recently-approved-medicine-for-endometriosis/.

[18] Van Stein, Katharina, et al. „Understanding Psychological Symptoms of Endometriosis from a Research Domain Criteria Perspective.” Journal of Clinical Medicine, vol. 12, no. 12, 1 Jan. 2023, p. 4056, https://doi.org/10.3390/jcm12124056.

[19] Chen, Li-Chi, et al. (2016). “Risk of Developing Major Depression and Anxiety Disorders among Women with Endometriosis: A Longitudinal Follow-up Study.” Journal of Affective Disorders, vol. 190, 15 Jan. 2016, pp. 282–285. https://doi.org/10.1016/j.jad.2015.10.030

[20] Carbone, Manuel Glauco, et al. (2021). “The Importance of a Multi-Disciplinary Approach to the Endometriotic Patients: The Relationship between Endometriosis and Psychic Vulnerability.” Journal of Clinical Medicine, vol. 10, no. 8, 10 Apr. 2021, p. 1616, https://doi.org/10.3390/jcm10081616.

[21] Jones, Georgina et al. “The impact of endometriosis upon quality of life: a qualitative analysis.” Journal of psychosomatic obstetrics and gynaecology vol. 25,2 (2004): 123-33. doi:10.1080/01674820400002279, https://www.tandfonline.com/doi/abs/10.1080/01674820400002279.

[22] Ellis, Katherine, et al. “Endometriosis is undervalued: A call to action.” Frontiers in Global Women’s Health, 3, 10 May 2022. https://doi.org/10.3389/fgwh.2022.902371.

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