Interstitial Cystitis- How I was diagnosed

Do you suffer from frequent UTI? Do you suffer from frequent urination and urgency to urinate? Do you suffer from burning urethra and vagina? Do you suffer from lower abdominal pain? If yes, then read this post. I am not a medical practitioner and this post is written from a patient’s point of view. However my suggestion is if you have the symptoms discussed in the following post then please visit an Urologist. Why I emphasise on an Urologist is something you will learn from my experience.

 Just two days after my son’s sixth birthday, I felt this excruciating pain for the first time. It was accompanied by urinary frequency and burning sensation. I was not new to UTI; therefore I thought it to be another round of UTI. Living in India most women have experienced UTI at some or the other point of her life. Poor toilet hygiene, lack of cleanliness and lack of toilet facilities are the main reason for the prevalence of UTI in India. I had my first UTI right after my honeymoon and my gynaecologist said that it was common for newlywed women to get UTI and it is known as honeymoon Cystitis.

After my honeymoon with cystitis was over I started getting UTI very frequently, usually twice a year. It used to go away in a day or two after taking a round of antibiotics.  However 2015 was different. I started getting UTI (supposedly) almost every month. I also noticed that this time around my infection was not going away with antibiotics and the whole thing was accompanied by debilitating pain. So much so that I used to not be able and do for usual chores.

My gynaecologist was convinced that it was nothing but UTI and she gave me antibiotics and all kinds of creams to apply externally. The antibiotic didn’t work and the creams and vaginal wash made my burning miserable. I was being asked by my gynae to do urine test almost every alternate day. My urine reports came normal. There were no signs of infection. I also had no signs of external infection as well. Clinically I was fine.

She asked me to do an ultrasonography and that report was also normal. My gynaecologist was convinced that the pain and burning that I was talking about was simply in my head and I had no infection and I was absolutely fine. I literally had to plead to her to give me pain medication as I was being unable to bear the pain. I don’t blame her because going by my reports and external examination everything was indeed fine. Clinically it was impossible for any doctor to see anomaly.

It was August 2015, my pain and burning was killing me. I called my gynae and she again asked me to do a urine routine test, the reports came out normal as usual and my doc was irritated. Irrespective of being one of the best gynaecologists in India she obviously had no knowledge about IC. She is not the only one in January 2005 a conference was held in India where most IC patients complained that gynaecologists often tell that IC does not exist. The scenario is similar even in western countries where IC patients are often referred to psychiatrists.  That day my husband suggested that lets go to an Urologist. So far I always thought that Urologists were for men and never went to any. But as the saying goes “beggars are no choosers”. I was in such a threshold that I had no choice, therefore I went.

Initially my Urologist also said that it was nothing but UTI, however the only difference was he was listening to every single detail that I was talking about. He didn’t negate my pain as figment of the imagination. Another thing he did was he underlined a small line in my previous USG report and said that I have issues with urine retention, something that was previously overlooked.

My quality of life suffering, most days I was not able to get up from the bed. I couldn’t eat, I couldn’t sleep, throughout the day I was urinating at least 30 times, and each trip to the bathroom was a nightmarish experience was burning and pain. But this time even though I was in extreme pain yet I had hope. My urologist was working with me and he never neglected even a minuscule symptom that I talked about.

It took about three months to get diagnosed. The name of my disease was interstitial cystitis (IC). I had never heard about this disease before and my first reaction was is this some kind of a cancer? I turned to Google for information and read extensively. Till 2011 it was believed that IC doesn’t exist in India and it is only common about white females. But Dr. Nagendra Mishra a leading IC specialist from Ahmedabad believes that IC was prevalent in India however it used to not get diagnosed. Most frequently IC is diagnosed as UTI, normal cystitis, bladder cancer, neurogenic bladder, incontinence, and even tuberculosis. As the IC symptom flares up during menstrual periods. Many women even went for hysterectomy due to wrong diagnosis.

In India the awareness regarding IC is still less. Even general physicians and gynaecologist to whom women usually go are unaware about IC. Even in western countries it takes years to get diagnosed with IC. It is a common joke in our IC network that the fifth doctor would be able to diagnose.

Interstitial Cystitis or BPS is often considered incurable and some people are of the opinion that it is auto immune disorder. The only medicine for IC so far is Pentosan Polysulphate which coats the wall of the bladder. It is sold as Elmiron in western countries however in India we have a generic version.

Interstitial Cystitis is an invisible disease. Its symptoms vary from person to person and thus it is very difficult to diagnose. Most urologists follow a process of elimination to reach to their conclusion. Urodynamics studies and cystoscopy are definitely there for more comprehensive results however as I am not a doctor I would not like to elaborate on it.

The objective of creating this blog is to raise awareness regarding Interstitial Cystitis. Here I would like to be as comprehensive as possible regarding IC. Hope this would help fellow IC sufferers in India.