Dr Sanjay Pandey, Urologist, Kokilaben Dhirubhai Ambani Hospital says that awareness and early diagnosis, coupled with a multi-disciplinary treatment approach holds promise for the treatment of Interstitial Cystitis-Bladder Pain Syndrome
Interstitial Cystitis Bladder Pain Syndrome (IC/BPS) is a painful disease, which is progressive, under-reported, under-diagnosed and under-treated, affecting a subset of population, where women outnumber men. In the vast age group in agony from adolescent to geriatric age, the urinary cycles are significantly bothersome and disturbing on account of pain, urgency and urinary frequency, leaving many to a progressed and disabled life style in the prime of their life.
Recent studies and surveys have shown a high prevalence of this entity in women silently affecting their social, physical, psychological, occupational and sexual aspects of life and thus the entire lifestyle.
IC/BPS has been largely neglected because of many reasons primarily being misdiagnosed as recurrent urinary tract infections and continued treatment in that direction for long. It has also been mistaken for another female pelvic painful disease, endometriosis, and like wise due to overlapping symptoms and got treated in the other direction without much relief.
The disease process emanates largely as a result of inability of repair or replenishment of the inner sensitive lining of the urinary bladder thus leading to progressive stage of bladder’s inner and sensitive linings being exposed to urine and onset of a vicious cycle of pan-cystitis that leads to nerves and muscles involvements of the bladder.
As the name suggests, IC/BPS encompasses multiple domains of complaints related to bladder function revolving around ever changing degrees of pain during the cycle of bladder filling and emptying. Being a multifactorial disease leading to disability of varying uantum in any patient, there was always a need for multidisciplinary care towards stabilising, healing and attempting cure on this dreadful but not uncommon disease.
A decade ago the department of Urology, Kokilaben Dhirubhai Ambani Hospital in Andheri, Mumbai commenced a programme of multidisciplinary care of the entire spectrum of IC/BPS. This enabled us to meet the challenge of multimodal therapy required by this progressive and ominous disease.
Teams in pain therapy, gynaecology and rehabilitation were formed under the umbrella of the urology department. These teams stratified the disease into various categories of progression and disability, to enable disease stabilisation and treatment.
Patient complaints in IC/BPS range from pain on bladder filling and partly or completely relieved by voiding, progressive urinary frequency and urgency related directly to the involvement of the sensitive bladder lining, gross night time urination and never ending complaints pain and burning in the region of the introitus and perineum.
The success in treating patients with this complex set of manifestations has been ascribed to categorising the disease into the following stages:
Early presenters and needy for medical management
Minimally invasive management in progressive disease
Surgical management of even urinary bladder substitution in cases where bladder is burnt out in disability of fibrosis.
Today, if patients with chronic bladder pain – pain in the region of pelvis, are diagnosed early, replenishment of the bladder’s inner lining can be medically commenced. This will stabilise the bladder by using sodium pentosan polysulphate which will repair the inner lining. This drug has far reaching and wonderful consequences in early cases and is now being manufactured and available in India after research of Swati Spentose. This drug thus takes care of the earliest aspect of the disease and modulates the natural history of progression.
The drug opens up an inexpensive treatment option for Indian patients, compared to importing the medicine into India. It also helps doctors contain the disease during the early days of diagnosis.
Progressive cases call for the use of minimally invasive approach of intra-vesical therapies to treat disease flares and cystoscopy guided hydro-distensions and fulguration. This helps to monitor and manage patients by combined management.
The most advanced presentations are of patients who have fibrosed small capacity bladders that are source of agony round the clock. Such cases require substitution cystoplasty by intestinal segments, which are done today by robotics, compared to open major reconstructions of the past.
As news of the availability of complete evaluations and progressive and time bound management of IC/BPS at the Department of Urology in Kokilaben Hospital spread, there were focussed meets with clinicians across the city and country. Awareness drives for patients were a parallel project, which helped patients get in touch with focussed urologists – gynaecologists teams in time and thus seek the right approach.
In 2015 this drive helped a group of focussed clinicians form GIBS (Global Interstitial cystitis Bladder pain Syndrome study group), a cohesive group of multi-disciplinary care comprising urologists, gynaecologists, pain therapists, pathologists and like minded clinicians.
The group took the subject around the country and globally. These efforts culminated in an annual meet of all research and advancements over the past three years.
GIBS 2019, scheduled for August 24-25, in Mumbai holds tremendous promise with the theme ‘Beyond the Horizon’. Clinicians and patients are encouraged to attend this event to incorporate composite patient care and spread awareness of early and focussed need on the disease that has plagued women in their most formative years. The meet will focus on quality of health that deteriorates with many urinary diseases and complaints which are missed out and misdiagnosed.