What on earth is endometriosis?
Possessing a womb can be a wonderful thing. The organ has the potential to house, protect and nurture a fetus and carry it to viability. Successful pregnancy and childbirth can be a beautiful and rewarding experience. Unfortunately, a uterus can also be the source of unrelenting pain and distress, negatively affecting the physical, mental and social aspects of women's lives.
It is estimated that one in 10 women worldwide suffer from endometriosis, a condition where fragments of the internal lining of the uterus (the endometrium) deposit and grow outside the organ, attaching to it and other internal viscera, such as the Fallopian tubes, ovaries, bladder and bowel. Less commonly, the tissue may be found in the abdominal wall, the umbilicus or even the lungs.
The deposits react to the cyclical monthly hormonal changes and fluctuations; they build up, break down and bleed. But unlike the lining inside the uterus that is expelled from the body as a period, these deposits have nowhere to go and they remain in the pelvis and other locations. One quarter of women with the condition have no symptoms, and some are mildly affected, but in the majority the hormonally stimulated tissue wreaks havoc, resulting in excruciating and debilitating pain.
The condition can only be diagnosed definitively following surgery, when the excised specimens are sent for evaluation and are positively identified. The disease cannot be cured, but can be managed and controlled with surgery and drugs, enabling affected women to lead functional lives.
According to Endometriosis UK, the average sufferer waits seven years before diagnosis, as the condition is very often misdiagnosed. Many women, for example, are diagnosed with pelvic inflammatory disease (PID), a condition that is usually a complication of sexually transmitted infections such as gonorrhoea or chlamydia, and these inaccurate assessments have caused disharmony in relationships, adding to the already overbearing physical trauma.
Time lost from school and work, disruption of extra-curricular activities, sleep disturbance, depression and interference with intimacy and sexual function are common sequelae. The disease is also one of the commonest causes of infertility. It has been estimated that as many as 30-50 per cent of infertile women may have endometriosis.
But, severe period pain, sometimes accompanied by gastrointestinal or urinary symptoms, is the hallmark of the disease, as what should be a monthly inconvenience becomes the equivalent of a regularly scheduled Category 5 hurricane ravaging the pelvises of sufferers of the condition. In some cases, the pain is stubbornly and terrifyingly persistent and has no cyclical pattern.
Not surprisingly, the economic cost associated with endometriosis is formidable. Decreased productivity from not only symptoms of the disease, but also from the side effects of the drugs used in its management, in addition to absenteeism, contribute to this. Many girls and women feel uncomfortable explaining the condition to teachers and employers, especially men, and this often contributes to misunderstandings that can jeopardise education and employment.
Also, unfortunately, many of us are socialised to believe that females are designed and expected to experience pain during their periods, and that it is all part of being a woman. This erroneous belief plays a significant role in insufficient empathy being displayed to victims of the disease, further marginalising them. As a result, many women suffer in silence.
Increased public awareness of this potentially devastating malady will not only facilitate timely diagnosis, but will also assist in making the lives of affected women more tolerable. The institution of policies geared to help women with the condition should be seriously considered. For example, once diagnosed, flexibility of hours and school and workplace practices, and the option of working from home when possible, should be explored.
In Jamaica, the BASE Foundation has been doing much to increase public awareness, and as March is Endometriosis Awareness Month, it has stepped up its activities. The organisation can be accessed via Facebook, Twitter and Instagram.
So, ladies, if you find yourselves lying in the foetal position and missing school or work because of agonising menstrual cramps, if sex is so painful that it is unbearable, if dosing yourself up on painkillers provides little or no relief, you might have endometriosis. Please seek medical attention, and if your clinician does not consider this diagnosis, do not be afraid to suggest it and discuss your options. Contrary to popular belief, women were not made to suffer.