Dr Dinesh Suman, Director- Neuro-urology & SCI Andrology Indian Spinal Injuries Centre, New Delhi talks about the urinary and sexual health concerns among persons with spinal cord injuries (SCI)
The lessons learned from the disasters of World War I and World War II taught that the neglect of urinary concerns was the most important cause of sickness and death in spinal cord-injured persons. With the developments in our scientific understanding, urinary causes no longer are the major cause of grave sickness and death in the Western world today. However, the situation remains dismal and gloomy in India, where urological problems of spinal cord injury patients remain grossly neglected. Urinary complications continue to be the leading cause of repeated sickness and poor health in over 75 per cent of patients and the cause of death in 15 per cent of spinal injury patients in India.
The common urinary problems after the spinal injury often result in recurrent symptoms of failure to pass urine, the need to use a catheter or tube to manage the bladder, uncontrolled urine flow or incontinence, repeated urinary infections, and complications such as deformed shrunken bladder, kidney and bladder stones, back pressure changes causing swelling of the kidneys and eventual kidney failure. These complications force frequent emergency visits to the hospital, needing repeated admission and advanced costly treatment. It places a significant financial and social burden on the patients, families, and communities.
Sexual and fertility problems of Spinal Cord Injury (SCI) persons remain vastly ignored in over 95 per cent of patients. Due to a lack of awareness and training and natural awkwardness in communication about such issues, most doctors and nurses don`t take the initiative to break the ice and help their patients. Even SCI patients find it difficult to get past their inhibitions and ask about such sensitive issues. Besides, our religious and cultural aspects hinder free communication about sexual matters. Thus, most young men and women with SCI are forced to live an “asexual” life, with deep psychological consequences about impaired self-image and low self-confidence.
Neuro-urology is a specialised field focusing on the nervous control of the urinary system and the management of urological conditions caused by neurological disorders, such as spinal cord injuries. India needs more Centres of Excellence in the dedicated Neuro-urology Department. Besides education and awareness creation, protocol-based scientific care, and life-long distance support through telemedicine, the dedicated neuro-urology department can offer state-of-the-art medical, minimally invasive, surgical, and neurostimulation and neuromodulation therapeutic treatment options for the necessary indications.
It is found that even after a successful spine surgery done at various major spine centers, most spinal cord injury patients continue to struggle with the challenges of neglected urinary and sexual health concerns. They are not guided well for appropriate neuro-urological evaluation and management due to a lack of awareness. ‘Neglected Neurogenic Bladder’ is the term used for an SCI person who has not had even one urologist’s visit and basic urological evaluation in the one last year or longer. This lack of care exacerbates the challenges when these patients go for treatment, long after their initial injury, in a state of multiple complications.
There is an urgent need to make nearly 1.5 million SCI in India aware of “Neglected Neurogenic Bladder.” This is a huge quantum of urological and sexual health neglect. Healthy life begins with self-awareness and taking responsibility for one’s own health through education and guidance.
Unfortunately, SCI patients are left in a vacuum and rarely guided to a specialised neuro-urology service for proper evaluation and management. During an internal survey of the out-patients, who visited us, after getting their spinal surgery from various other hospitals across the country, it was found that nearly 90 per cent of them had never had detailed neuro-urological evaluation and management, despite the ongoing concerns. Hence, it brings us satisfaction when young SCI men and women express joy after receiving discussion and guidance about sexuality and fertility concerns. The rejuvenation sparks their whole person and energises their pursuit of life. A number of our SCI patients have developed intimate relationships, have got married, and now have their own children and families.
Every SCI person needs to understand the necessity of maintaining a safe and balanced urinary system to maintain good health, avoid unnecessary complications, and have a good quality of life. The principles of “Prevention, Preemption, and Prompt care” work effectively in maintaining good health and avoiding preventable complications with timely intervention and proactive measures.
In a nutshell, India needs to pay serious attention to urinary problems and related sexual health concerns among individuals with spinal cord injuries with dedicated comprehensive care without reinventing the wheel!