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Engaging the Endo Challenge
The economists and social psychologists are yet to do the analysis in T&T, but with between five per cent and ten per cent of women of reproductive age affected by the painful and crippling effects of endometriosis (endo), the psycho-social and financial impacts are already being categorised alongside other better known non-communicable diseases.
Tens of thousands of girls and women in T&T, many of whom suffer in the midst of misunderstanding and ignorance, endure the debilitating symptoms of this treatable but so far incurable disease. It is characterised by the inexplicable presence of tissue similar to the inner lining of the uterus which grows on the outside, forming lesions on organs such as the ovaries, bowel and bladder.
Among the main symptoms are excruciatingly painful menstrual periods, lower back and pelvic pain, painful sexual intercourse, bowel disorders and chronic fatigue.
The disease, says obstetrician/gynaecologist, Dr Brian Brady, “clearly inflicts significant economic burdens but (unlike diabetes, heart disease and hypertension) does not attract the same investment in health care delivery and promotion.”
The experts also agree that diagnosing endo can be a challenging task, especially since, as Dr Brady argues, “typical symptoms may overlap with other common conditions such as irritable bowel syndrome and pelvic inflammatory disease.”
“In some studies,” Dr Brady says, “a delay in diagnosis has been reported on average at ten years.”
Among the strategies being adopted to ensure timely diagnosis is the promotion of greater professional awareness within the medical community while educating the wider national community about the symptoms and impacts of the disease.
The focus has not only been on girls and women, but on the men who share domestic, social and workspace with them.
Dr Brady is a senior lecturer in obstetrics and gynaecology at the University of the West Indies (UWI) who has worked with the T&T Endometriosis Association (TTEA) and Medical Association to bring greater attention to the disease both within the profession and among the general public.
The symptoms associated with endo have not always been easy to talk about openly. But, through the campaigns of the TTEA, some girls and women have begun speaking freely and openly about the impact of the condition on their lives.
For example, popular entertainer, Nikki Crosby, serves as an “ambassadress” to the TTEA. Teacher/advocate, Abeesha Toussaint, has also for years led an aggressive campaign to spread greater knowledge and awareness of the disease. They are both affected by endometriosis and have told their heart-rending stories numerous times.
School teacher Alysia Whittaker is also prepared to speak freely about her own battle with the disease. Her belated diagnosis came close to five years ago. She remembers the precise date, August 8, 2013 – during the course of surgery for fibroids.
“It was during that surgery that my doctor realised that I had not just fibroids but Stage III deep tissue endometriosis and told me the following day when I awoke,” she recalls.
“It was the first time that I heard of this disease, and let me be the first to admit that I didn’t know much about it and didn’t really want to know.”
Stage III endometriosis is described in the literature as “moderate endometriosis” characterised by the infiltration of affected tissue into the organs in the pelvic region, including pelvic side walls.
The consequences of this condition have been, for the 40-year-old, both grave and life-changing. She has lost a kidney, had to have emergency surgery and suffered serious intestinal disease. “It stuck my large intestines to my pelvic bone and the doctors had to cut and reattach my intestines, so I’m missing a few centimetres of my intestines.”
“I also had to plan my entire life around my 14-day period cycle,” she says. “So my friends and family know I can’t go anywhere or do anything with them for 14 days. My boss knew I will take a day or two every month for my period.”
Dr Brady points to current work to get to the bottom of the precise causes of the disease. “Ongoing research such as the endometriosis promotion project and the world endometriosis phenome and bio-banking harmonisation project aim to further elucidate what actually causes endometriosis,” he says.
“This will hopefully drive earlier diagnosis and new therapeutic interventions.”
“With increasing understanding of the underlying disease process we are seeing novel putative medical treatments that target hormonal resistance, immune dysfunction and vessel formation,” he says.
“Surgical intervention has clearly shifted from the old-fashioned open approach (involving surgical incisions) to the keyhole (laparoscopic) approach aimed at excising the disease rather than burning and merely touching the tip of the iceberg.”
Dr Brady is certain the expertise to execute successful treatment of the disease exists in T&T though “the multidisciplinary model in approaching care is not always followed.”
In complex cases, this ideally involves access to specialist endometriosis services and a managed clinical network.
In Dr Brady’s view, such a network would comprise a gynaecologist with advanced laparoscopic skills, input from colorectal and urological surgeons, a specialist nurse, pain management and access to imaging and fertility services.
He was recently involved in establishing the Edinburgh Endometriosis Centre, a multidisciplinary team providing patient centred treatment of all grades of endometriosis, including the laparoscopic management of advanced disease in Scotland.
“Not infrequently,” he advises, “patients will end up having multiple open surgeries which are not dealing with the root of the problem. This makes further surgery more complicated and challenging.”
“Patients should be appropriately counselled of their options, the risks and benefits of any intervention,” he says. “If this involves surgery this should preferably be done by laparoscopy resulting in better outcome for the patient, with the appropriate preparation, correct equipment and experienced surgical team.”
March is recognised in T&T as Endometriosis Awareness Month. For further information, please e-mail firstname.lastname@example.org or visit the TTEA’s Facebook page.
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