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Do you suffer from frequent/chronic 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, it “could be” Interstitial Cystitis.
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 was another round of UTI. Most Indian 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(USG) 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 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 and clueless. 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 with great patience. 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 was 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 with 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 the 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 Dr. Google for information and read extensively. IC is one of the neglected diseases and in most cases it either remains undiagnosed or misdiagnosed.
Bladder pain syndrome or interstitial cystitis (BPS/IC) is a neglected, debilitating, chronic, inflammatory disorder of the urinary bladder characterized by variable degree of bladder pain, frequency and urinary urgency. It is a unique disease with no treatment or cure. It is often considered auto-immune disorder.
Twenty-five years ago it was believed that BPS/IC did not exist in India and it was a disease predominantly present among western white females. However now an estimated 1.25 million patients exist in India. 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 very less. Most 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.
Therefore my suggestion to all those who suffer from chronic UTI, frequent urination, burning sensation in the urethra and vagina and painful sexual intercourse is to get yourself tested by an Urologists. The above symptoms could be for some other disease as well but there is no harm in getting yourself tested.
Disclaimer: 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 post then please visit an Urologist.