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Submitted by PatientsEngage on 27 October 2020

Balaka Basu, founder of Interstitial Cystitis India, shares the story of her journey of being diagnosed with this chronic and debilitating condition to being the founder of a support group that has helped many in a similar situation. 

“Changing poison into medicine”- Daisaku Ikeda

When I started suffering from the debilitating disease called Interstitial Cystitis, I thought it was the end of everything in my life. I had little knowledge that it was actually the beginning of a great journey. I consider getting diagnosed with interstitial cystitis (IC) was a blessing in disguise. It gave me a new perspective to look at life. It gave me a new reason to love and treasure life. It taught me compassion towards others who are suffering and it impelled me to do something for my fellow sufferers. It made me create one of the biggest platforms for IC patients called Interstitial Cystitis India (ICI) Patient Forum. We have so far helped not only Indian patients but also patients from Nepal, Bangladesh, Oman, UAE, Germany, Pakistan and Uganda. We work with diaspora Indian patients from Canada, USA, New Zealand, Germany, and Great Britain. We are also helping in creating support groups in countries like Uganda, Nepal and Bangladesh.

What is Interstitial Cystitis?

Interstitial Cystitis or Bladder Pain Syndrome is an incurable chronic condition. It is primarily an inflammation of the bladder. The symptoms are overlapping with Lower Urinary Tract Infection and few other diseases often making it difficult to diagnose. Experts vary on their definition and nomenclature of this disease.

What are the signs and symptoms of IC?

  • UTI like symptoms without any infection
  • A persistent, urgent need to urinate
  • Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis may urinate as often as 60-80 times a day
  • Pain in pelvis or between the vagina and anus in women or between the scrotum and anus in men (perineum)
  • Burning urethra, clitoris and vulva(vagina)
  • Chronic pelvic pain
  • Pain or discomfort while the bladder fills and relief after urinating
  • Pain during or after sexual intercourse
  • Anal and vaginal discomfort

What to do if you get any of the above symptoms?

If you feel any of the above symptoms for more than 6 weeks immediately consult a doctor, preferably an Urologist or an UroGynaecologist. General Physicians and Gynaecologists may not have proper awareness about this disease.

The severity of symptoms caused by interstitial cystitis often varies, and some people may experience periods during which symptoms disappear. Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, urine cultures are usually free of bacteria. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection.

How is IC diagnosed? Is there any specific test for IC?

There are no specific tests for IC. Most doctors do a Cystoscopy or Urodynamics Study of the bladder. Usually doctors use a series of tests to eliminate other conditions. They will ask you to do urine culture to rule out UTI. They may even do a biopsy to rule out bladder cancer. It takes time even for the doctors to confirm as the symptoms are overlapping with numerous other diseases.

Click here: It Took 19 Years For Interstitial Cystitis to be Diagnosed

Is IC a rare disease or is it lack of awareness?

Twenty-five years ago it was believed that BPS/IC did not exist in India and it was a disease predominantly present in Western world. Symptoms of BPS/IC and tuberculosis are more or less same and as tuberculosis is common in India most of the patients of BPS/IC were diagnosed and treated as tuberculosis. Now, it is well established that PBS/ IC is not uncommon in India and it is estimated that there are more than 1.25 million patients with BPS/IC worldwide. Almost 80% of IC patients are female. Women in the menopausal bracket are more prone but IC can affect anybody.

There is acute lack of awareness about IC not only among common people but even among doctors. Other than Urologists very few doctors have even heard the name of this disease. No wonder Interstitial Cystitis is known as an Orphan Disease.

How is IC treated?

There is no specific treatment for IC. Cystoscopy with hydro distension, oral therapy (Pentosan, Amytriptiline, Gabapentin) intravesical therapy and surgical therapy form the back bone of management. It is difficult to know which treatment is best for a given patient. A staged protocol is followed and all the treatment modalities are applied to the patients in a sequential fashion—starting from the non-invasive to more invasive. However, diet, physical therapy and pain management help IC patients a lot. Many patients go into remission following a strict elimination diet.

Related Reading: Indian Diet For Interstitial Cystitis

The Challenges for an IC patient 

The biggest challenge for any interstitial cystitis patient is to get diagnosed. Firstly 80% of the patients are women and whenever they face any problem they visit a gynaecologist. Unfortunately, most gynaecologists have no knowledge about this disease. Secondly, Interstitial Cystitis cannot be clinically diagnosed and in most cases, the urine or ultrasonography reports do not show any irregularity and therefore the doctors often feel that the patient is imagining the problems. Almost 90% of IC patients across the world have at some point been told that they are imagining their symptoms. Many have been put on anti-depressants or sent to psychiatrists. Our objective is to guide the patients to the correct doctor who has knowledge about the disease and also gives tips on ways to stay symptom-free. Often due to continuous suffering patients go into depression. Our objective is to help the patient in living a positive life. We often also counsel the family members of the patients as well.

Is IC curable?

Interstitial Cystitis is incurable but with proper diet, medicine and therapy patients often go into remission. Interstitial Cystitis patients need to be treated in a multidisciplinary way by Urologist, Pain Therapist, Pelvic Floor Therapist, dietician and also at times a Psychiatrist/Psychological Counsellor to deal with their pain induced depression. However, often getting onboard all these doctors becomes difficult. For example, in Italy and Spain, they have dedicated centres of interstitial cystitis where a patient can get access to all the doctors under the same roof. However, in India having such a dedicated centre is nearly impossible at this moment.

How Interstitial Cystitis India (ICI) was formed?

Unlike the western countries, Patient Support Group is not a common thing in India. Due to the absence of proper infrastructure managing a patient support group is a difficult task in India. Additionally, Government apathy, lack of funds and social stigma affect the smooth functioning of the support group.

The main objective of Interstitial Cystitis Patient Forum is to raise awareness about the disease not only among the general public but also among medical practitioner. The other objective is to help the patients cope with the disease.

Birth of an Organisation 

In 2015, when my Urologist said that I have Interstitial Cystitis; I had no idea about the disease. I was not the only person who was ignorant of this disease; even doctors all over the world are not familiar with this disease. Urologists are the only specialists who have an idea about this disease however even they lack clarity as there has been no extensive research on this disease. Interstitial Cystitis is one of the Orphan Diseases that is neglected all over the world.

I started researching online about the disease. During this time I came across few international support groups. I started seeking help from them. I realized that support groups are an excellent medium to get help for any patient. Inspired by them, I established this support group. Initially, we were just three patients but now we have more than 1000 ppatients.

Importance of a support group

The importance of a support group is immense in helping a patient cope with his/her symptoms. When a patient sees that another person is also going through the same ordeal they often feel confident that I am not alone. Patients often feel comfortable talking about their problems to a fellow sufferer. In many cases, the patient doesn’t open up to the doctors or families because they feel that no one will understand them but the same patient often pour out their heart to a fellow sufferer. I wish to see dedicated support groups for all chronic diseases in near future.

If you are a patient or you suspect that you have IC then do get in touch with us.

Email: icindiaorg@gmail.com
Website: http://www.interstitialcystitisinindia.org/