Endometriosis: A silent Tormentor Women are Unaware of

A disease lurking around for years before being detected affecting women generally at reproductive age and if left untreated for long can impact fertility as well leads to cancer in certain cases, is, sadly, not taken seriously by its victims. 

Possibilities of the patients of this disease developing cancer over a period of time is in proportion to 3 to 2 of breast cancer, doctors cautions. It is a common affliction, but deceptive. Severe pain is the only diagnosable symptom. Women take it as any other pain till it starts interfering with their sex life and reproduction aspirations.

It is Endometriosis. Medical science is yet to understand its causes and find out a treatment for it. Doctors call this an enigma, and say medical management is the only effective solution to it. When nothing helps, women go for a surgical solution as the last resort.

Millions of women get affected by it every year in India alone. It is a painful condition following the outgrowth of tissue similar to the lining of the uterus outside it, commonly on the ovary, inside fallopian tube and pelvic organs such as rectum, ureter and bladder, and at times also extends to extra-pelvic sites such as diaphragm /lungs. This tissue reacts to hormonal changes, causing inflammation, scar tissue and adhesion.

Endometriosis generally affects females on the onset of period and continues through to the menopause. The common symptom of this disease is severe pain in the lower part of the belly (pelvis).

Women experience severe pain during periods, in between or after the sexual intercourse, or while defecating. Pain in some women gets chronic. They also suffer heavy bleeding during periods or between periods, trouble getting pregnant, bloating or nausea, fatigue, depression or anxiety.

“The diagnosis and treatment of endometriosis is quite complicated. It is very difficult to diagnose this as the problem develops gradually over the years. Severe pain during the period or intercourse which most women ignore are symptoms of endometriosis. When pain is severe and constant, women should not ignore it,” says gynaecologist Dr Jaideep Malhotra.

Salivary and proteomics (blood test for analysing protein profile to identify specific protein markers for endometriosis) tests to diagnose the disease are at the developmental stages. Currently, the diagnosis is done through ultrasound and laparoscopy.

“Treatment of endometriosis depends on various factors such as at what age this illness has been detected, fertility issues, marital status, pregnancy etc. Surgery is the last option in those cases where medicines are not able to manage it.," Dr. Malhotra adds.

 According to the World Health Organisation (WHO), endometriosis interferes with quality of life, causes fatigue, depression, anxiety and infertility. Pain during sex due to endometriosis can lead to interruption or avoidance of intercourse, and thus impact sex life of affected individuals.

“Endometriosis often goes undiagnosed or is misdiagnosed for years, and one of the major reasons is the normalisation of period pain. Many women are told that pain during menstruation is just part of being a woman, lulling them to ignore the symptom and delay seeking medical help. On an average, it takes about 7-10 years for a woman to get a correct diagnosis,” says Dr. Abhishek Mangeshikar, founder of the Indian Centre for Endometriosis (ICE). 

“Even when women do seek medical advice, many doctors, especially those not trained in endometriosis, might mistake the symptom for other conditions like irritable bowel syndrome (IBS) or urinary tract issues, or simply dismiss the pain as normal," he further says.

ICE has initiated a campaign to raise awareness about this disease among women. It also aims to educate doctors about the complexities of endometriosis so that more women can get diagnosed earlier and treated correctly and is also laying stress on policy changes to make treatment more affordable and accessible as only a few insurance companies provide coverage for it.

Genes, immune responses, and possibly environmental factors have a role in the disease. Several doctors advise women to not ignore severe pain during intercourse, bowel movement, or urination, especially around periods. They urge women to take this pain seriously and seek medical advice if it is interfering with their work life and relationships. 

“Women affected by the disease can take proactive steps to manage their reproductive health such as seeking medical advice on irregular periods, maintaining a healthy lifestyle, exercising regularly and having a balanced diet to manage inflammation and monitor menstrual symptoms. They should also share the symptoms with healthcare providers for early detection,” says Dr Vimee Bindra, founder of Endometriosis Foundation of India.

As the disease over a period of time affects the quality of eggs, women should save their eggs so that they bear children when the subsides, advise doctors. The only way to prevent endometriosis is early detection.  it can damage organs, if it is delayed. But more important is to start a massive awareness campaign through all forums to fight the disease in an effective manner and save women from this creeping disease.

Though voluntary organisations are doing their work, they are unequal to the task. Governments should take up this cause with required budgets. With symptoms giving no clue to the disease neither to the patients the doctors, and its causes are still being researched, the only hope as of now for the victims is to know about it at the initial stage take care of it before the medical science is able to get to the bottom and come up with a treatment.