The death of author Hilary Mantel at the age of 70 is an irreparable loss to the literary world. While going through the life story of this remarkable woman, what intrigued me as a gynaecologist was not her death by stroke, which was devastating enough, but the suffering she endured during her life due to endometriosis. She experienced the humiliation of being diagnosed with a psychiatric illness on account of the excruciating abdominal pain and was put on antipsychotic drugs that paradoxically made her psychotic! In desperation, she stopped seeking medical advice, read medical texts herself and made an accurate self-diagnosis of endometriosis, which was later confirmed by doctors in London.

This is a disease which, as they say, is “not life-threatening but life-destroying.” The pain made it impossible for her to hold a 9-5 office job that “… narrowed my options in life, and it narrowed them to writing.” It was our gain but at what cost. The treatment for this condition a few decades ago was drastic. She underwent a surgical menopause at the age of 27 during which her ovaries and uterus were removed, a catastrophic event that rendered her not only barren but sterile.

Though her treatment was horribly mutilating according to present standards, she was better off than women, who were historically treated with leeches, blood-letting, straitjackets, genital mutilation, left hanging upside down and even put to death on suspicion of madness or being possessed by the devil.

WHAT IS ENDOMETRIOSIS?

Now what is this debilitating condition called endometriosis? It is a painful disorder in which the endometrial tissue that lines the inner walls of the uterus grows outside it in places like the ovaries, fallopian tubes, the pelvis and sometimes in areas beyond it. It occurs chiefly in women in their thirties and forties but can happen in teenagers too. Why? No one knows. It is said that a Nobel Prize is awaiting anyone who discovers its cause and cure.

The endometrial lining of the uterus is a dynamic structure that thickens each month to prepare the uterus, the nursery so to say, for the reception of a baby. When, due to hormonal changes, it learns that the egg has not been fertilised, it is shed along with blood as menstruation which, as we all know, comes out through the vagina. The abnormally situated endometrium in endometriosis also behaves in a similar manner but there is no way this shed endometrium and blood can leave the body. As a result, it accumulates within the organ it has grown in – usually the ovaries which are nearest to the uterus. These fill and become tense during each menstrual cycle, leading to the formation of endometriomas that increase in size with the passage of time.

WHAT IS CHOCOLATE CYST?

Endometriomas are also called chocolate cysts as the water content in the blood collected within is gradually absorbed and what remains is a thick, viscous, chocolaty material. Depending upon the severity of the disease, the surrounding tissue gets inflamed and scarred, leading to adhesion formation between the ovaries, uterus and other organs. Sometimes the organs are so densely glued together that it leads to a condition called frozen pelvis.

This process can lead to:

· No symptoms at all but are discovered during laparoscopy for say, infertility.

· Pain during periods – dysmenorrhoea, which could be moderate to excruciating.

· Pain while having intercourse – dyspareunia, especially when the large cysts are glued to the back of the uterus or the area between the vagina and rectum, is involved in wrecking a couple’s marital life.

· Pain during defecation for the same reason or due to rectal endometriosis. This could be accompanied by diarrhoea or constipation

· Chronic pelvic pain or pain in the lower back.

· Heavy menstrual periods or bleeding between periods (intermenstrual bleeding).

· Infertility – due to the compression of the normal ovarian tissue and difficulty in the pickup of the egg (if it is released at all) by the tubes.

· Dysuria– urinary urgency, frequency, and sometimes painful voiding.

· Chronic fatigue, nausea and vomiting, migraines, low-grade fevers.

· Bodily movement pain – present during exercise, standing, or walking.

The severity of pain does not define the extent of the disease. Mild endometriosis could cause severe pain, while advanced endometriosis may be associated with mild symptoms or none at all.

Endometriosis can be confused with

· Pelvic inflammatory disease (PID)

· Ovarian cysts.

· Irritable bowel syndrome (IBS), a condition that causes bouts of diarrhoea, constipation and abdominal cramping.

DIAGNOSIS AND MANAGEMENT

Large cysts can be felt by a pelvic examination, ultrasound of the pelvis is the mainstay of non-invasive diagnosis. Although MRI helps, a direct visualisation by laparoscopy is the gold standard.

Endometriosis is a challenging condition to diagnose and manage. There is no cure but a number of treatments may improve symptoms. This may include pain medication, hormonal treatment or surgery. Hormones have to be given continuously orally or through an intra-uterine device so that the woman does not menstruate at all, both inside and out.

GnRH agonists produce medical menopause that relieve the symptoms of those not desirous of a pregnancy. They are also used to suppress hormonal production by the body during infertility treatment so that exogenous hormones can be given in the right quantity for the right duration to get the desired results.

Surgical removal/ablation (usually by laparoscopy) of endometriosis (not the entire internal genitalia as was done in Hilary Mantel’s case) treats those whose symptoms are not manageable with other treatments but the disease is notorious for recurring.

THE SOCIO-PSYCHOLOGICAL EFFECTS

Besides the underlying physical disease, there is an immense social and psychological effect that impacts the individual, the family and society at large. After all, the woman is the pivot around which the family revolves and if she is in a state of constant pain, everybody gets affected. If this basic unit is affected, one can imagine the effect it will have on the overall health of a society. Women with endometriosis in the workforce have to take leave of absence ever so often that they are not welcome. Only someone as rare as Hilary Mantel had the aptitude of converting this disadvantage into an advantage. Though there is no permanent cure for the condition, the key to managing this debilitating disease is early diagnosis, control of pain, either medically or surgically, or measures adopted to improve fertility in those desirous of children.

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