Endometriosis awareness: Need for a comprehensive health policy in India

By Prof Ram Shankar Upadhayaya
Endometriosis is a chronic, inflammatory condition affecting approximately 247 million women globally. It involves the growth of tissue similar to the lining of the uterus outside the uterine cavity, leading to severe pain and numerous complications.
Despite its high prevalence, progress in developing effective treatments is limited, highlighting a significant unmet medical need.

Endometriosis is an estrogen-dependent disease where tissue resembling the endometrium grows outside the uterus, causing inflammation, adhesions, and severe pain. This condition can profoundly impact a woman’s educational, professional, and social life, affecting about 10% of women during their reproductive years.

Endometriosis is a growing global health issue, affecting millions of women across regions and ethnicities. Approximately 6-10% of women worldwide suffer from this condition, which translates to about 247 million women globally and around 42 million in India.
It causes a range of distressing symptoms, including severe period pain, chronic pelvic pain, painful intercourse, painful bowel movements, fatigue, depression, and infertility.
Breakthroughs in research have identified key molecular pathways involved in the disease, leading to the development of new therapeutic targets. Researchers are currently investigating the role of mPGES-1 enzyme in disease progression and its potential as a target for non-hormonal therapies.

Severe menstrual pain should not be dismissed as normal; it can be a symptom of endometriosis.
It affects women globally, regardless of race, class, or socioeconomic status.
Many women report symptoms from their very first period.
It involves imbalance in immune and hormonal systems, with pelvic lesions being just the tip of the iceberg.
Surgery can remove lesions but addressing the underlying systemic environment is crucial.
Pregnancy may relieve symptoms for some, but it is not a guaranteed or advisable treatment.
Exposure to toxins like dioxins, found in pesticides and contaminated food, can contribute to the development of endometriosis. Eating organic can help reduce exposure.
Women with endometriosis often have higher rates of other conditions, such as IBS, migraines, allergies, and higher risk for certain cancers and autoimmune diseases.
Diet and lifestyle changes can significantly impact symptom management and overall health.
Organizations like the Endometriosis Association are working to improve care and treatment options through advocacy and research.

Normal periods should not cause excruciating pain, but endometriosis often does. Common symptoms include severe pain in the lower abdomen before and during periods, pain during or after sexual activity, painful urination or bowel movements during periods, fatigue, heavy menstrual bleeding, and infertility.
An endometriosis diagnosis is confirmed through laparoscopy, a surgical procedure performed under anesthesia. This procedure reveals the location, size, and extent of endometrial growth, aiding in better treatment decisions.

The exact cause of endometriosis is unknown, but research is on. Factors such as genetic predisposition, immune system irregularities, and environmental toxins are believed to play roles. Efforts are being made to identify new treatments targeting specific disease mechanisms, to manage pain and disease progression.
Endometriosis significantly affects various aspects of a woman’s life. The chronic pain and associated symptoms can lead to:
Young women with endometriosis may miss school frequently, affecting their academic performance and future opportunities.
Persistent pain and fatigue can result in absenteeism and reduced productivity at work, potentially hindering career advancement.
Debilitating symptoms can strain relationships and lead to social isolation. The emotional toll, including anxiety and depression, is significant.

Managing endometriosis involves a combination of medical treatment and lifestyle adjustments:
Anti-inflammatory diets, rich in fruits, vegetables, and omega-3 fatty acids, can help reduce symptoms.
Regular physical activity can help manage pain and improve overall well-being.
Practices like mindfulness, meditation, and therapy can support mental health and help cope with chronic pain.
Building a supportive healthcare team can make a significant difference in managing the condition.
Current treatments for endometriosis focus on managing symptoms rather than curing the disease. These include:
Nonsteroidal anti-inflammatory drugs (NSAIDs) are commonly used to relieve pain.
These include birth control pills, gonadotropin-releasing hormone (GnRH) agonists, and progestin therapy, which help regulate or stop menstrual cycles. Stronger anti-estrogens have been shown to reduce bone mineral density over time, increasing the risk of osteoporosis.
Laparoscopic surgery to remove endometrial lesions can provide relief, but recurrence is common.
Acupuncture, physical therapy, and dietary modifications can complement traditional treatments.
Drugs targeting specific pathways involved in the development of endometriosis, such as mPGES-1 inhibitors, are under investigation. Genetic and molecular profiling of patients may lead to personalized treatment plans that are more effective and have fewer side effects.

Given the impact of endometriosis on women’s health and socio-economic well-being, it is crucial for the govt to develop and implement health policies specifically targeting this condition. Under initiatives like ‘Beti Bachao, Beti Padhao’, the govt can increase awareness, promote early diagnosis, and ensure access to comprehensive care for women suffering from endometriosis. Policies could include funding for research, training healthcare providers, establishing specialized endometriosis treatment centres to provide holistic and multidisciplinary care, and creating a fund for women’s health research.
Additionally, institutionalizing this effort by establishing national institutes of women’s health would further solidify the commitment to addressing this issue.
By prioritizing research, education, and patient-centered care, we can reduce the burden of endometriosis and help women lead healthier, more fulfilling lives.
Fostering dialogue, promoting research, and advocating for better healthcare strategies will help ensure women with endometriosis receive optimal care and live free from the constraints of this debilitating disease.