Living with endometriosis, but don’t live with pain

Prof. Dr. dr. Hendy Hendarto, Sp.OG(K)
Prof. Dr. dr. Hendy Hendarto, Sp.OG(K). Photo: FK UNAIR

Jakarta, IO – The condition known as “Endometriosis” exerts a negative impact on women’s health and quality of life. To mark the commemoration of World Endometriosis Month (WEM) 2022, Bayer, in collaboration with clinical experts in endometriosis across countries, published new Consensus Guidelines “Clinical Diagnosis and Early Medical Management for Endometriosis: Consensus for Asia”. This guideline is expected to serve as a reference for doctors to accelerate the treatment of endometriosis, in order to get optimal results for patients. This is very important, considering the delay in diagnosis and delay in treatment for endometriosis is still a challenge in Asia, including Indonesia. The delay in the diagnosis of endometriosis can reach up to 7-10 years. 

“This new guideline is certainly very important, especially for Asia Pacific, which includes Indonesia. This guide, as a result of the collaboration of experts, brings a new paradigm by shifting the diagnosis based on surgery, to a simpler one based on clinical symptoms, so that it can accelerate the diagnosis of endometriosis. A further innovation in the guideline is the early use of medical therapy with the goal of immediately stopping the progression of endometriosis,” said Prof. Dr. dr. Hendy Hendarto, Sp.OG(K), Chairman of Indonesian Association For In Vitro Fertilization (“Perhimpunan Fertilitas In Vitro Indonesia – PERFITRI”) at the webinar with theme “Don’t Live With Pain” on Tuesday (29/3/2022). 

Recent algorithms in consensus guidelines propose to focus on patient history and clinical examination, to reduce diagnostic delays, especially in low-resource settings. Some things to watch out for: information on pelvic-abdominal pain and/or infertility, gynecological symptoms, non-gynecological cyclical symptoms, and information about adolescents with intractable pain unresponsive to non-steroidal painkillers. If there is a tendency to endometriosis, then a pelvic examination should be carried out immediately. Next, it will be stated whether the patient has endometriosis, so that they can immediately undergo early treatment. 

Prof. Dr. dr. Wiryawan Permadi, Sp.OG(K), Chairman of Indonesian Association of Reproductive and Fertility Endocrinology (“Himpunan Endokrinologi Reproduksi dan Fertilitas Indonesia – HIFERI”) stated that endometriosis is a highly individual disease, with varied symptoms and effects. Some people have mild pain during menstruation, but some have heavy symptoms and recurring menstrual pain. The prevalence of endometriosis as a chronic progressive disease with high pain affects nearly 10% of women of reproductive age globally. In Indonesia, the general prevalence ranges from 3-10%, especially in women of reproductive age. 

“Women and young girls who have close relatives with endometriosis are 7-10 times more likely to have it themselves. Endometriosis is also reported to be very expensive in health care, absenteeism and loss of social and economic participation.” He added that HIFERI also tries to increase awareness regarding endometriosis through programs such as increase access to services that are suitable for endometriosis sufferers, “For example, making consensus on effective evidence-based clinical guidelines, increasing access to rural and regional areas, etc. We strive to provide better information, access to early detection, diagnosis, intervention, management and treatment. HIFERI also supports relevant research on endometriosis.” 

Currently HIFERI is also focusing on the Endometriosis Task Force with priority achievement of awareness and education (both face-to-face and virtual), clinical management, research, and revision/update of the HIFERI National Endometriosis Management Consensus. “What we hope is that within four years there will be a significant improvement in the quality of life of endometriosis sufferers, increased public awareness regarding endometriosis and certainly, progress in the treatment of infertility due to endometriosis,” he added. 

Estrogen Hormone 

On the same occasion, Staff of Fertility Division of Reproductive Endocrinology Department of Obsgyn (“Divisi Fertilitas Endokrinologi Reproduksi Departemen Obsgyn”) Faculty of Medicine University of Indonesia (FKUI)-Cipto Mangunkusumo Hospital (RSCM), dr. Achmad Kemal Harzif, Sp.OG(K), explained that one of the most common problems experienced by endometriosis patients is a delay in diagnosis. “From various studies, it was found that the average delay in diagnosis was 6-7 years. From the research data of patients who visited the RSCM, it showed that on average, the patient took 6 months from the onset of symptoms to coming to the doctor. In addition, the average patient has been undergoing therapy at 4 health facilities for 3.5 years before being actually referred to the correct one.” 

This certainly happens as a result of various factors, one being the lack of knowledge related to this disease. As a result, the treatment so far has not been optimal. “To reduce the delay in diagnosis, several things need to be done. First of all, is not to normalize the menstrual pain experienced. Patients often do not recognize their own pain. If menstrual pain is felt with high intensity, disturbing their activities and sometimes occurring outside of menstruation pain, endometriosis should be suspected. Then, visit the health facility and do some checks. If endometriosis is diagnosed, the patient will soon be given drugs that will specifically treat it,” he explained. 

He also added, “The goal of early treatment is to control the development of endometriosis by reducing the level of the hormone estrogen that triggers the development of the disease and its symptoms. The control must be at the right level to avoid the long-term effects of falling estrogen. Treatment evaluation is carried out periodically every 3-6 months to assess the response of treatment and if the response is good, then therapy is continued in a long-term treatment.” 

Meanwhile, Rika Vira Zwagery, M.Psi, a psychologist and Head of Department of Educational Psychology Faculty of Medicine University of Lambung Mangkurat, Banjarmasin, stated that in her experience so far, it is common for women who suffers endometriosis to experience anxiety, mood disorders, loss of self-control, fear, feeling helpless, pessimistic, even depression. “In the midst of the pressures they may feel, and at the same time they have to undergo longterm treatment, they will tend to experience stress and even depression. If we make an analogy, endometriosis and this psychological condition can be said to be a pendulum, the physical complaints experienced by endometriosis sufferers will have an impact on their psychological health and psychological health will affect the symptoms of endometriosis,” Rika explained. 

Rika also added, women with endometriosis must be supported by a strong support system. The support system consists of partners, families, co-workers, doctors, psychologists and the patient community who work together and provide mutual support to optimize the patient’s condition. “Research shows that having a good relationship between patients and their support system is a protective factor for the mental health of endometriosis patients, so that they can improve their condition. In addition, joining the endometriosis community is also a plus so that patients are still provided with the correct information.” 

It showed that there was a positive relationship between the patient’s psychological condition and the success and adherence of medical therapy. “If patients feel comfortable and strengthened by the people around them, through the support and positive affirmations they receive, it will certainly help to them accept themselves fully and accept all of the conditions they experience, and ultimately adhere to treatment,” she concluded. (est)