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SPOTLIGHTS
Living With Endometriosis: Early Diagnosis is Key
An interview with Dr. Mee-ran Kim, Professor in Obstetrics and Gynaecology at Korea Seoul St. Mary’s Hospital, Chair of the APAC Consensus, on the gynaecological condition, endometriosis.

In healthy females, menstruation is a common occurrence. The female body sheds the uterine lining through the vagina if pregnancy has not taken place. The body will bleed for three to five days though this will vary depending on age, body weight, stress, and other health problems.

While it is normal to feel some discomfort or pain during menstrual periods, some individuals report experiencing extreme pain that keeps them from going about their normal activities for several days. This severe pain may be attributed to an underlying condition, like endometriosis.

Here, we speak to Dr. Mee-ran Kim, Professor in Obstetrics and Gynaecology at Seoul St. Mary’s Hospital, Chair of the APAC Consensus, on this disorder to get a better sense of what it is, its misconceptions, and the various treatment options currently available.

  1. As many as 10 per cent of women of childbearing age worldwide are affected by endometriosis. What is endometriosis, its symptoms, and what is its disease burden in Asia?
  2. Endometriosis is a chronic gynaecological disease in which the uterine lining and tissue grow outside the uterus, thereby triggering an inflammatory reaction resulting in pain and adhesions.1 Affecting up to 10 per cent (190 million) of women and girls of reproductive age worldwide,2 it is a serious clinical condition that warrants professional care, management, and treatment. Besides imposing a negative burden on economies worldwide due to the high cost of medical and surgical treatment, endometriosis also affects a women’s physical and mental well-being, social life, and livelihood, significantly reducing their overall quality of life.

    According to the European Society of Human Reproduction and Embryology (ESHRE), it is estimated that between 2 and 10 per cent of women worldwide suffer from endometriosis, and 30 to 50 per cent of infertile women have endometriosis.1 Clearly, the disease remains a global issue and this burden extends to Asia as well, where it was reported that 15 per cent of Asian women suffer from endometriosis.3

    In terms of the symptoms associated with endometriosis, ESHRE listed the following in their 2022 guidelines:4

    • Painful menstrual periods (dysmenorrhea);
    • Non-menstrual pelvic pain or pain occurring when a woman is not menstruating;
    • Pain during or after sexual intercourse (dyspareunia);
    • Pain emptying bladder/painful urination (dysuria);
    • Pain emptying bowel (dyschezia);
    • Painful rectal bleeding or the presence of blood in the urine (haematuria);
    • Shoulder tip pain;
    • Cyclical lung problems (pneumothorax);
    • Cyclical cough, chest pain, or coughing of blood (haemoptysis);
    • Cyclical scar swelling and pain;
    • Fatigue;
    • Infertility; and/or
    • Any other cyclical symptom.

    While symptoms are immensely helpful in providing doctors with the first hint towards the diagnosis of endometriosis in their patients, it is crucial to note that diagnosis should not be determined through physical symptoms alone as they are not exclusive to the condition. Moreover, as endometriosis affects women in different ways, symptoms vary from person to person and hence it is difficult to pinpoint common symptoms. For instance, while some women experience pelvic pain, others may not experience it at all.1

    As such, we highly recommend for women who are suspected of or at risk of endometriosis consult their healthcare provider so they can get a more accurate diagnosis and understand the holistic range of treatment options that are available for them.

  3. How does endometriosis affect a woman’s quality of life and work productivity?
  4. Endometriosis affects a woman’s quality of life on a personal, social, and economic level – with a significant cost of illness burden incurred per year due to the loss of productivity from their inability to work.5 In fact, it was reported that 40 per cent of women faced challenges in their career growth because of their condition, and they lose an average of 10 hours of work per week to rest and go for their medical consultations.

    The discomfort and inconvenience women face daily because of endometriosis – from experiencing chronic pain and digestive issues, to fertility complications and fatigue – must not be underestimated. Not only does it hinder their ability to find normalcy in their everyday lives, but it also takes a serious toll on their physical and mental health, with some suffering from anxiety and depression.

    Yet, despite the negative impact it has on women, there remains a knowledge gap that must be addressed as not many women are informed about the condition and its symptoms. As such, they suffer the debilitating pain in silence whilst delaying diagnosis and treatment.

    In light of this, it is paramount that we continue to spread awareness and educate women on the condition, encouraging them to seek consultation and treatment early to live better lives.

  5. While there are currently no known causes of endometriosis, what are some theories that have been put forth?
  6. Currently, the most common theory for the cause of endometriosis is retrograde menstruation,6 where shed menstrual endometrial tissue fragments arrive in the pelvic cavity through the fallopian tubes and develop into endometriotic lesions.7 This theory was first hypothesised by John Sampson in 1927, an Albany gynaecologist who took an interest in the disease after encountering it in many of his patients.

    Although several other theories have also been put forth as part of this discourse, it is crucial to note that the pathogenesis of endometriosis remains largely unknown and unproven. However, what we do know is that early intervention is key – women who are at risk of, or are suspected of endometriosis should consult their healthcare providers immediately and understand the range of treatment options available for them.

  7. What are some misconceptions about endometriosis?
  8. Currently, one of the key drivers of the endometriosis burden is a delay in diagnosis and treatment as a result of misconceptions women may have about the condition.

    For instance, some of the common misconceptions include the belief that having severe menstrual or pelvic pain is normal for every woman’s menstruation cycle and that speaking up about it is a sign of weakness. This is untrue – it is not normal for women to experience extreme pain during their menstruation cycle and voicing out their discomfort is not a sign of failure, as endometriosis affects different women in varying ways. This should not undercut the life-altering experiences that every individual woman suffering from endometriosis faces.

    Aside from this, other common misconceptions include the belief that women cannot get pregnant if they suffer from endometriosis, and that it is a condition that is not treatable. In fact, while there is no cure for endometriosis, it is treatable and can be properly managed through early diagnosis and treatment, which is why seeking intervention early is highly encouraged. Women can also improve their chances of fertility by consulting their doctors, who would then provide a range of treatment options available and suitable for them.

  9. Are there any precautions women with endometriosis can take to prevent or reduce its effects?
  10. Currently, there are no known ways of preventing endometriosis. However, women can manage their condition by seeking intervention early. If they experience any of the symptoms mentioned in Q1, they are highly encouraged to see their healthcare provider and get a proper examination.

  11. How is endometriosis diagnosed?
  12. Traditionally, the diagnosis of endometriosis is commonly done via laparoscopy. However, in the recent Asia consensus guideline that we unveiled in collaboration with Bayer and key clinical experts across the region, we recommend that laparoscopy is no longer the diagnostic gold standard – and this aligns with ESHRE’s 2022 guidelines too. Instead, we’d recommend focusing on examining symptoms that are indicative of endometriosis to avoid diagnostic delay, and this could be done alongside the assessment of patient history as well,8 as symptoms associated with endometriosis are not always exclusive to the condition. To ensure that we are able to provide holistic support to all women suffering from endometriosis, encouraging them to speak up about their own pain, it is important for us to work towards exploring other possibilities including non-invasive diagnosis and treatment options.

  13. What are some treatment options available for women with endometriosis?
  14. While endometriosis is a chronic condition and there is no cure for it, there are ways for women to manage it. Treatment options that are available focus on reducing pain and discomfort, as well as improving women’s chances of fertility. Depending on the symptoms and the severity of endometriosis, doctors may propose different kinds of treatment options whilst considering certain key factors, as below.

    Firstly, doctors will consider women’s preferences to decide on the most appropriate intervention and ensure that any treatment option caters towards providing patient-centric care.

    Secondly, the doctor will consider the severity and symptoms, any fertility issues they have, age, patient’s intentions to get pregnant, and risk and side effects of treatment options. For instance, while there is no cure for endometriosis, doctors would recommend women to manage pain by taking hormone medication such as contraceptives and Progestin therapy as the first line of therapy, especially for those with no immediate pregnancy desires.1,2,9 Supplemental hormones are useful in reducing pain as it helps to prevent and slow down the growth of endometrial tissues.9

    On the other hand, for women with no immediate pregnancy desires, therapies such as GnRHa are recommended for managing pain. As these drugs create an artificial menopause, taking a small dosage may help to decrease menopausal side effects. However, women can stop this medication anytime should they have the desire to get pregnant.9 To help facilitate this, fertility treatment such as in vitro fertilisation (IVF) or conservative surgery may also be recommended by doctors for women suffering from endometriosis and who are facing difficulties conceiving.9

    Last but not least, doctors will consider the treatment options available depending on the availability of current resources. For instance, surgical procedures may be better performed in expert centres.10

    We believe that treatments should be individually tailored by considering women’s presentation and therapeutic needs.

References

  1. ESHRE 2022, Information on Endometriosis: Patient leaflet based on the ESHRE Guideline on Endometriosis,3, https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ ESHRE-GUIDELINE-ENDOMETRIOSIS_ patient-Guideline.pdf? la=en&hash= BB5BAD6B21FEFEA90D1440203C05793C71D0B05C.
  2. World Health Organization (WHO), Endometriosis, 2021,https://www.who.int/news-room/fact-sheets/detail/endometriosis#:~:text=Endometriosis% 20affects% 20roughly%2010%25%20(190,and%20girls%20globally%20).
  3. Yen, C. F., Kim, M. R., & Lee, C. L. (2019). Epidemiologic factors associated with endometriosis in East Asia. Gynecology and minimally invasive therapy, 8(1), 4.
  4. ESHRE 2022, Information on Endometriosis: Patient leaflet based on the ESHRE Guideline on Endometriosis,5, https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-GUIDELINE-ENDOMETRIOSIS_patient-Guideline.pdf?la=en&hash=BB5BAD6B21FEFEA90D1440203C05793C71D0B05C.
  5. Armour, M., Lawson, K., Wood, A., Smith, C. A., & Abbott, J. (2019). The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: a national online survey. PloS one, 14(10), e0223316.
  6. ESHRE 2022, Information on Endometriosis: Patient leaflet based on the ESHRE Guideline on Endometriosis,4, https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-GUIDELINE-ENDOMETRIOSIS_patient-Guideline.pdf?la=en&hash=BB5BAD6B21FEFEA90D1440203C05793C71D0B05C.
  7. Hill, C. J., Fakhreldin, M., Maclean, A., Dobson, L., Nancarrow, L., Bradfield, A., ... & Hapangama, D. K. (2020). Endometriosis and the fallopian tubes: theories of origin and clinical implications. Journal of Clinical Medicine, 9(6), 1905.
  8. Kim Mee-Ran et al., International SEUD congress 2021: Poster Presentation Summary Clinical Diagnosis and Early Medical Management for Endometriosis: Consensus for Asia, 2021.
  9. Mayo Clinic (2022), Endometriosis, https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661.
  10. ESHRE 2022, Information on Endometriosis: Patient leaflet based on the ESHRE Guideline on Endometriosis,8, https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-GUIDELINE-ENDOMETRIOSIS_patient-Guideline.pdf?la=en&hash=BB5BAD6B21FEFEA90D1440203C05793C71D0B05C.

About the Interviewee

Professor Mee Ran Kim
Professor Mee Ran Kim

Professor at the Department of Obstetrics and Gynecology, Seoul St. Mary’s Hospital, the Catholic University of Korea. She is VP of the Korean Society of Endometriosis, Honorary president of SKRGS, Society of Korean Robot Gynecologic Surgery, President-elect Korean Society of Menopause, The board member of Korean Society of Gynecologic Endocrinology. She is the Chair of the APAC Endometriosis Consensus guideline.

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