GIBS to develop guidelines for diagnosis & treatment of rare disease 'bladder pain syndrome' soon

Laxmi Yadav, MumbaiThursday, September 1, 2016, 08:00 Hrs  [IST]

In a first of its kind initiative in the country, Global Interstitial Cystitis Bladder Pain Society (GIBS) has undertaken an initiative to develop guidelines for diagnosis and treatment of rare disease, interstitial cystitis/bladder pain syndrome (IC/BPS). The guidelines will streamline the diagnosis process in order to shorten assessment time for the disease and subsequently avoid delay in treatment.

Interstitial cystitis, also known as bladder pain syndrome (BPS), is a chronic, yet manageable bladder conditions, characterized by bladder or pelvic pain, pain during or after sexual intercourse, urinary urgency and frequency, and waking several times a night to urinate. While the exact cause of the disease is unknown, it may be caused by a breakdown of the protective lining of the bladder, the mucous layer that lines and protects the bladder wall. Damage to this layer may allow irritating substances in the urine to aggravate and inflame the bladder wall, resulting in pain. Certain factors such as allergies, premenstrual cycle and sexual intercourse may trigger or worsen interstitial cystitis symptoms. The disease is more prevalent in women than men. Men or women of any age can have interstitial cystitis.

The guidelines, being developed by a panel of eight doctors comprising of urologists and gynecologists led by Dr Rajesh Taneja, noted urologist at Indraprastha Apollo Hospital, New Delhi and GIBS 2016 chairperson, are likely to be released by GIBS in a couple of months.

Formed in May 2016, GIBS in association with Swati Spentose Pvt Ltd held its first scientific congress on IC/BPS in Mumbai from August 27-28, 2016 to create awareness among medical fraternity like urologists and gynaecologists about the disease and build consensus among them on the protocol for diagnosis and treatment of the disease. Developing guidelines for the same is a step further in the direction.

Dr Rajesh Taneja, who has been treating IC/BPS patients over the last 25 years, said “IC/BPS has been in a state of flux in the last quarter of century. As many as 80% of people with IC are women. There’s no test for interstitial cystitis. If one approaches a doctor complaining about bladder pain along with frequency and the urgency to pee, the next step is to rule out what else it could be. Both men and women would first need to undergo tests to rule out urinary tract infections, bladder cancer, sexually transmitted diseases, and kidney stones. In women, endometriosis is another possibility. For men, IC can be mistaken for an inflamed prostate or chronic pelvic pain syndrome.”

The delay in diagnosis of IC/BPS leads to delay in treatment, resulting in massive suffering of the patients. Hence we at GIBS have taken initiative to come out with diagnosis and treatment protocols for the disease which will guide gynecologists and urologists on IC/BPS screening thereby speeding up its treatment, said Dr Taneja who has treated 500 IC/BPS patients so far.

Dr Sanjay Pandey, senior urology surgeon at Kokilaben Dhirubhai Ambani Hospital and GIBS secretary, said “Because there was nothing to focus on this subject before, scientific congress of IC/BPS is new initiative we have started in Mumbai. Doctors who did not know the subject were treating patients for the other reasons. The disease does not have diagnosis criteria. Patients approaching urologists for the treatment after visiting 8-10 doctors. The disease needs guidelines in the interest of patients. Women who suffer from the disease approach gynecologists who don’t know the subject. Hence we are partnering with gynecologists to educate them about the disease and ensure that patients get right treatment at the earliest.”

While being treated for IC, patients may be prescribed a combination of medications for optimal sysptom control. Comfora (Pentosan Polysulphate sodium) developed by Swati Spentose is the only US FDA approved oral therapy indicated for the relief of bladder pain or discomfort associated with IC. So far 1000 patients have taken Comfora and results are very good, said Dr Pandey.