Nisha Gupta's struggle with Interstitial Cystitis

Nisha Gupta is a bank officer. She is suffering from IC for the last 10 years. Her caring son Jatin is trying everything to give some comfort to his mother. Today Nisha shares her story of struggle with Interstitial Cystitis India.

Nisha's Story

Hi Guys! My name is Nisha. I live in Panchkula near Chandigarh.

My IC problem started in 2009 after the sad demise of my beloved mother. She passed away because of uterus cancer. In 2009, I started to feel some pain in my urinary tract, but I could not understand what it was. After going to the washroom, the pain used to subsidize for some time and it used to come back again. At that time, I was also having painful menstruation. So I went to my Gynecologist and told her about this. At that time I was nervous that I may have Cancer. She did all the tests for cancer but nothing came in the reports. So she gave me antibiotics. Sometimes my pain used to decrease with it, but it used to come back every time along with burning and increased frequency. She treated me for 3 years, but it was of no help. Whenever I asked her to refer me to some urologist, she said that I was having this problem due to the periods.
In these 3 years, I was very upset. One day I went to PGI Chandigarh in the urology department for this problem and they told me I had IC. That time I didn’t know what IC was. They gave me some medicines but they were not helpful. I took treatment from there for 1.5 years, but my problem increased day by day. Then I went to Alchemist Hospital in Panchkula where Dr. S.K. Sharma (Urologist) started my treatment. Firstly he said that IC can’t be diagnosed without doing Cystoscopy, which PGI doctors didn’t do at that time. After having done Cystoscopy and Hydrodistension from Alchemist in Dec 2013, I felt some relief and pain and frequency were decreased. I was hoping that my problem will be solved now.
But after 2-3 months, it started to increase again. Then my son Jatin started searching the internet for the problem and found that hydrodistension works only for some time. I didn’t know about the IC diet at that time. My son researched on the internet and told me about diet modifications for IC diet and left things like Tea, Coffee, tomatoes, etc. which either didn’t help me.
In Dec 2015, Dr. S.K.Sharma did my cystoscopy and hydrodistension again and told me that the condition of my bladder has worsened since 2013. After that, bladder installations were done every 15 days for 6 months. The effect used to last only for about a week. But still, I had all the symptoms.
I am working in PNB Chandigarh. I thought I was alone who had this problem and went to washroom very frequently. Then my son found out about this IC India Group and after that, I realized that I am not alone. Everyone provided very useful information and offered support from this group. Jatin also met with Balaka form this group in Mumbai, she suggested him to take me to Dr. Rajesh Taneja at Apollo Hospital in Delhi. I went to him in May 2019, he also did cystoscopy with hydrodistension and ablation of hunner lessions inside the bladder. After that, I felt relief with my pain and frequency. He gave me BCG for 6 weeks every week, the last one was given in August 2019. I had very little pain till last BCG, but now it has come back again. It feels like nothing has been done and it seems to have aggravated more. I have a lot of pain, frequency and burning now these days. I am planning to go to Dr. Taneja again in October.
This was my whole IC story.  Now I realize that with this problem symptoms decrease only for some time, but they always come back again.

Story of Pain Warrior Arun Dahiya

Arun Dahiya is the co-founder of Interstitial Cystitis India. Even though she is a severe case of IC, and also suffers from numerous other comorbidities yet she is always there to help and support the patient members of ICI. She is also well connected with the global IC social media community and many looks up to her. She is a true pain warrior and today she is sharing her story for the first time with us.

Patient Story

Hi, my name is Arun Dahiya. I am a 26-year-old female. Young, fun-loving, ambitious and chronically sick. Yes, you heard it right I live with multiple illnesses i.e interstitial cystitis, fibromyalgia, myalgic encephalomyelitis, POTS, allodynia and irritable bowel syndrome. And yes there is no cure.

At the end of December 2012, suddenly I felt intense pain and was urinating blood. Scared, I visited several doctors who told me that it can be an infection and put me on a number of antibiotics. However the pain never went away. I changed a number of doctors but the pain remained constant.

Hopeless, I went to my current urologist who diagnosed me with interstitial cystitis. It’s a disease that is tough to diagnose as all the test results show that everything is normal. I thought since I am diagnosed at least there would be an end to this strange pain. To my horrors, it was the beginning of a never-ending cycle. That day my life got changed for forever. My daily symptoms are sharp stabbing pain in my bladder that travels down to my leg, urethral pain, frequent urination and sometimes urine retention. All my diseases are a result of central sensitization syndrome.

I had to change my diet completely. Like every young adult, so many times I too was dependent on fast foods and now I had to remove coffee, tomatoes, chocolates, everything citrus, spices, carbonated drinks, gluten-containing grains like wheat, etc. Yes, everything that I loved. Though this was the best choice I made in life. I am honestly on a very healthy diet containing smoothies, veggies and low acidic diet.

To deal with IC, I have tried most of the oral meds, without much relief. To ease symptoms I went through cystoscopy and hydrodistention. Where they put a scope in the bladder to look into it. They found hunner's lessions. These are deep scars on the bladder that ooze blood. They were burnt down and for two days I was in the hospital with a Catheter. This procedure helped me for six months with frequency. Now I go for cystoscopy every six months and it helps me with frequency.

To get relief from the pain, I tried superior and inferior hypogastric plexus nerve block. In it , the pain-causing nerves are burnt with the use of alcohol and phenol. Though getting the block was so painful  It gives A 30 percent relief after seven painful years. Along with that monthly IV  Lidocaine, infusions help to cope with pain.

On a side note, living with intense pain my pain traveled to the whole body and caused central nervous system sensitization. So I have painful joints now, and getting up walking, sitting for long is painful now. Recently diagnosed with myalgic encephalomyelitis. I am fatigued to the limit that on same days getting out of bed or holding a pen etc is impossible.

How this disease changed my life?

I was a 19-year young ambitious girl whose life went down due to this disease. Now everyday of my life is uncertain with the amount of pain I will have to go through. My day starts with pain and ends with it. While people of my age are enjoying the prime of their life and my life has become an endless run to various doctors and specialists. Every week I have to visit doctors. Currently, I am seeing a psychiatrist, urologist, pain specialist, gastroenterologist, gynecologist, and therapist. Well, I feel blessed that I have a good team of doctors who genuinely care about me and are very compassionate.

Due to this disease, my social life has become zero. As no longer I can plan things outside with friends. As just one day out could leave me tired and in huge pain. This disease has kind of become a barrier in my relationship with everyone. I am no longer the person they once knew. I have to depend on others for day to daycare and I can’t work anymore.

The biggest toll this disease has taken is on my emotional well being. I am depressed and tired because of all this. Living with a chronic illness isn’t easy. One gets numb and tired with life. You become hopeless and sometimes feel that your life has no meaning. There are days when all I want is to die.

IC hugely impacted my career too. So many dreams got crushed because of it. I no longer have the energy. And can’t do my dream job. I worked for two months, pushed through. But had a crash in the end. Finally had to decide I can’t function like this.

The most saddening part is that it has no cure and you have to live your whole life in pain.
Various days I cry a lot, wither in pain, change positions and live with the guilt. Sometimes walking, laying down and sitting is also a painful process. However, I am one fighter woman. And there is nothing that can break me. My spirit is yet alive. This invisible illness is a part of my life and it’s perfectly ok I still have lots of hope with me. I am a warrior.

IC Survivor Story of Bharathi Shiva

U

p until 1992 I had no problems at all. Looking back I realize I was so blessed! I never had the need to go to the bathroom more than thrice a day. In fact, often I had to remind myself to go. I could be outside the whole day without worrying about going to the loo.

But overnight all that changed. It was Nov 1992. I was 17. I remember clearly, one night feeling a heavy kind of pain and fullness in my bladder. The pain went away when I passed urine. But soon came back. Again it went away when I went to the toilet. This happened a few more times that night. When this continued for a week I became alarmed and went to a doctor.

Every test I did, Sugar, urine culture, kidneys, a test with a dye injected to check for blockages, came back normal. But my reality was far from normal. Imagine at the blink of an eye going from using the toilet just thrice in a day to now having no count on the number of times. 

Left with no diagnosis and my reports showing normal I could do nothing about it. Feeling the pain and going to the toilet to relieve it became a part of daily life. It also meant times in the day where I had to bear with the pain until I get access to decent toilets. Bus rides, watching movies in theaters (No multiplexes those days), being outdoors like a beach or a park meant being in pain for long hours. 

The strange thing is the pain has no fixed schedule. It can occur and recur at any time. Many days the pain would recur immediately. And if this happens at nights, it would keep me on my toes! Making me get up, go to the loo, come back, lie down, feel pain, get up again for an hour or so before the pain subsides
 

And each day varies. Not just each day, it varies even within a day. Sometimes no pain for several hours followed by an hour or two where the pain would return every 5 or 10 mins. Days fluctuate between good, bad, ok. Good days meant being pain-free for several hours. Then you have Flare days. Days when pain is continuous. When going to the toilet doesn't bring relief or just a few minutes of relief. The flares usually subside after a day or two.  Sometimes it can stretch to 3 or 4 days. I do not have any other issues like burning or urgency. My only symptom is a pain in the bladder. Relieved by passing urine.

M

y pain is not the unbearable or excruciating kind. If you can imagine a balloon being filled with water beyond capacity, the heaviness, the pressure. That's how my pain feels. And if I hold it for too long it starts to burn as well.

I can function with the pain. I can talk, walk, do things while having pain. But it will be with a lot of discomforts. And the intensity of the discomfort increases with every passing minute. Like when are you holding your breath and waiting to exhale. Once I pass urine the relief is instant. I will be pain-free until the time it decides to strike again. 

No one knew about this till recently. I did not tell anyone. I hid it from my friends. For me back then anything to do with the subject of the toilet was embarrassing, dirty and yucky!  I would wait till no one was around and only then use the toilet. Choosing to bear with the pain rather than allow anyone to see me go to the toilet. Much later as the years went by I still did not tell anyone because I felt anyway they cannot help me, so what's the point. Secondly I myself did not know what my condition was. How was I going to explain to others . 

For a brief two year period from 1996 to early 1998, my condition improved by at least 70%. It never went back to being what it was till I was 17 though. But by early 1998 it came back. Meanwhile  I completed my studies, got married, had kids. Pregnancy did not increase or decrease my condition. 

Life moved on. My mystery condition showed no sign of going away. I would often hope it would suddenly disappear. Overnight. Just as it had come. 

All along though I kept trying to find out what my affliction was. In 2011, during one my usual Google searches, I found the term Interstitial Cystitis. I could not believe it. After 19 years of being in the dark I finally got an answer. But it came with deep disappointment when I found it had no cure.

Still it was infinitely better than being in the dark. From thinking I was the only one with this strange condition, to finding out it has a medical name, to discovering IC websites and blogs by IC patients. But none of them were Indians. I was certain I was the only Indian in the whole wide world with IC.

S

oon after my discovery I went to see a Urologist.  Though I had read there wasn't a cure. I was in Singapore then. The doctor looked at me and wasn't convinced. He said he had seen only one IC patient in his practice and that too recently. A Caucasian man in his 70s, whose pain was so severe he couldn't stand or walk and had to use a wheelchair. "Looking at you, I doubt if you have IC" he said. "If you had you wouldn’t be able to sit and talk like this". He suggested eliminating other conditions like OAB or PFD. When those medicines did not work he confirmed that I may have some form of IC. He said the only drug was Elmiron which wasn't available in Singapore and the cost of getting it from the US would be exorbitant. Plus there was no guarantee of it working for all. I agreed. I had also read about its side effects. So I did not pursue further treatments.

Then in Nov 2017 I chanced  upon Interstitial Cystitis India Forum in one of my Google searches. My jaw dropped. In all these years, I wasn't able to find a single Indian with IC. Now I saw a dedicated website and a personal blog by the Founder Balaka Basu. I am now an active member of the Forum's Patients Support Group. I learned a lot (still learning).  Some of the members are very well informed on the latest treatments. They are of immense help to newly diagnosed patients and people like me who had given up on treatments thinking there is no cure. What I learned was that if not cure, there are a lot of treatment options to alleviate or manage the symptoms. This encouraged me to consult a Urologist again. I am now taking Comfora/ Elmiron (the one I wasn't sure if I should take or not earlier). I learned from the forum members that not all have side effects and that it has shown to work very well with many. And that I should give it a try.

People now ask me how I lived/live with IC/PBS. I have no proper answer to this. I deal with it as best as I can at that moment. I tolerate it, put up with it, cope with it and forget about it once that day's episode is over.  The only difference is back then I coped in silence. Today I have the IC India Forum group to reach out to for support, for clearing doubts or to just vent. Being connected to a group like this has been very empowering for me.

Bharathi Shiva is 44 years old. She is having IC since she was 17. She lives with her two sons and husband in Mumbai. She has a Master’s degree in Social Work. Currently, she is associated with the Centre for Vocational Training (For Adults with Special Needs). Today she shares her  27-year journey with IC and what led her to this group, and hope.

Dr Jagriti Shares her IC Story

Hi, I am Jagriti a doctor by profession. I am basically from the trouble-torn Kashmir State residing in Delhi at present. I have been suffering from IC for the past 3 to 4 years. Initially, my symptoms started as UTI for which I took medication. My symptoms of pain in the lower abdomen, frequency, and urgency recurred after a couple of months. This time urine report was normal but I still took antibiotics and alkaliser syrup. These medicines did not help me. Thus began my journey to doctor's clinics. First, a gynecologist who associated my illness with postmenopausal hormonal changes. She prescribed again alkaliser and local estrogen cream and prescribed a few tests Meanwhile I started noticing that tea, coffee, and citrus fruits aggravated my symptoms. The same year I traveled to Europe along with my husband. My symptoms worsened. Even my husband who is also a doctor did not support me. He said it is all in my mind. He was more bothered about the euros that he was spending on my frequent use of washrooms rather than my pathetic state. I used to pee every minute. My life came to a standstill. My work, my family suffered. My self-confidence was low depression crept in. I stopped socializing just restricted myself to my room. The only thing that brought a smile to my face was the sight of a washroom. Then finally I consulted a urologist who advised a series of investigations. This time my ultrasound revealed one damaged non-functional kidney and my focus changed from bladder to kidney. Got my CT and Renogram done. My urologist advised nephrectomy i.e.removal of my affected kidney. Then I went for a second opinion to Dr. Taneje who strictly advised against the surgery. Heaved a sigh of relief. God, I had forgotten about my IC symptoms, just as I was taking leave of Dr. Taneja I mentioned my bladder symptoms to him.Therewith a bang he arrived at the diagnosis. He said that I have interstitial cystitis. Its the real culprit and I pay should more attention to it rather than my kidney Ic needs to be controlled as it cannot be cured completely He asked me to avoid acidic food .and prescribed a few medicines Citrosoda, probiotics laxatives, and pentosan polysulfate. I take chaach, coconut water, curd, watermelon, gluten-free food daily. A complete no-no to tea coffee and aerated drinks. I think I am 70 to 80 percent cured. Thanks to my Doctor and my support group ICI. I think all the members of our group should spread awareness about this disease. Patients especially the females suffer a lot before being diagnosed. Some are not diagnosed at all. They suffer silently. General practitioners and gynecologists need to be taught and made aware of this not so rare illness yet so difficult to diagnose. Being a doctor it took me years get diagnosed. What about layman. let us all join hands and support more and more patients and be their guide.

Shyamlata Agarwal was Diagnosed with Interstitial Cystitis in 2009

I am Shyamlata Agarwal from Jamshedpur. 

I was around 45 years of age when the first symptoms of IC started to occur, soon after my menopause. It first started with a frequent need to pass urine during the day as well as the night. After one year of the first symptom, I also started to feel a burning sensation while passing urine. For the first two years, I did not go to the doctors since I thought it must be a UTI infection as both the symptoms mentioned above were sporadic (at intervals).

After two years I decided to do something about it as the symptoms were not going away. After consulting family and friends, I got the reference of Dr. D. D. Gaur in Bombay Hospital, Mumbai. Dr. Gaur carried out Cystoscopy and Urethral Dilation on 26/11/2009 and diagnosed me with Interstitial cystitis. The tests and the procedures were painful and I was given medicines to take every day. Almost one year after this when I went to Dr. Gaur I was again suggested for Cystoscopy and Hydrodistention which I got done in Nadiad. I visited Dr. Gaur three more time in the next two years and by May 2012, I decided to stop visiting Dr. Gaur as I was not seeing any significant improvement in my symptoms. Dr. Gaur is a good doctor. Post-2012 I stopped allopathy medicines. My mother was a very spiritual woman and I’d always found the act of praying to be very calming. In this period I started praying more frequently and started a feel a lot better. I cannot attribute the improvement to one particular thing but life was much normal in 2013/14 and 15.

In 2016 the symptoms resurfaced after I’d taken a Sauna bath in a Spa. After one-year things started getting worse and I visited my local doctor in Jamshedpur who once again performed a Cystoscopy in May 2017. At this point, someone suggested visiting Dr. Rajesh Taneja and till date, I’m undergoing treatment by him. One thing that I’ve come to realize is that I’m very prone to UTI, especially when I am traveling and have to use a public restroom. Hence I try and take all precautions when I am travelling and as advised by Dr. Taneja I’ve recently started getting Urine Routine Test done every 15 days in order to track the onset of the infection. During the infection period, life becomes very miserable. I cannot walk/pee and that is a lot of pain in my Urethra. Sometimes there is Urine retention causing unbearable pain and at that time I feel that my bladder will burst any minute. Currently, I’m taking medicines like Comfora, Atarax, Clonotril. I spend 2 hours a day in my mandir praying and sit and meditate every day for 20 mins. I’m also taking Homeopathic medicines. I cannot say that today I feel as good as I was feeling in 2013-14 or before the onset of IC. But I am hopeful that by the combination of my current treatment and my will power to get better I would soon be able to live a normal life.

Kripa Karki from Nepal shares her IC story

Hi, My Name is Kripa Karki from Nepal currently living my dream in Dubai. I am a food lover, love traveling and was proud of being the first working lady in my family. I had a good job, awesome friends and most of all lucky a loving and caring fiancé. However, everything changed after Interstitial Cystitis struck me.

August 19, 2018, was the most painful day of my life when all my dreams shattered. It was six months before my wedding and instead of planning my wedding, I and my fiancé were going around Hospitals in Dubai.

I was taken to the emergency room around 3am at Aster Hospital in Dubai. My stomach was severely aching as if I was dying. I was continuously having loose motions like never before. I did some urine test and blood tests and was given prescriptions for food poison and they released me. The next day evening again I was in deep pain and no medicine would help so I was rushed to the hospital. I was again asked to do a urine test and Sonography of the Upper Abdomen. The result said UTI.

Even after taking medicines for a week, the symptoms didn't go away. I went to Al Noor Polyclinic where I was again asked to do Blood tests, Urine culture thrice, urine test twice, PAP Smear examination (my nightmare), Sonography of Pelvis (TVS), test for blood sugar, and Glucose Tolerance Test. After being checked by two GPs and a gynecologist they gave up after a month and said all my tests were clear and there was nothing wrong in the tests. The Gynecologist gave me emotional support and suggested that I see a good Urologist in Unicare Hospital.

The Urologist gave me a prescription of three months for Overactive Bladder and asked me to see a gynecologist. It was my breaking point because every day was a battle and I couldn’t perform well at work because it requires a lot of hard work as it was a busy season. I went to her and she asked me to get the medication for 9 months and I gave up. I tried all sorts of diet, homeopathy and cranberry syrups as well. I also went through a tough time when I cried every night and my vision would turn blur and would feel so weak and cold all the time. With a heavy heart and crying every night my fiancé and I decided it would be best for me to quit the job which I loved the most.

November 20, 2018, I flew back to Nepal and rushed to Medicare National Hospital and Research Centre Ltd. The gynecologist there again asked me to do urine culture, urine test , and PAP smear test. Then she gave me medicines for urine infection and some ointments for pain relief. However, the feeling of heaviness, burning, frequent urination and whole-body pain wouldn’t go away. Finally, I was again sent to an urologist who kept me under medication for a month and then got admitted at the hospital for 7days. He also performed a cystoscopy without any painkillers. He also suggested me some medicine which I had to import from India. But nothing worked. Thankfully, throughout this process my fiancé supported me and we performed our wedding ceremony.

Finally, a close family member suggested me to see a doctor at Apollo hospital, Delhi.

March.25.2019 I went with my family to see Dr. Rajesh Taneja Who is genuinely a kind and courteous person listened to my woes and trauma. He asked me to do so many tests like X-ray, urine routine and microscopy, Aerobic culture and sensitivity (urine), CBC with ESR, etc. After the result came I was finally admitted for Cystoscopy and Bladder Biopsy. Then, he explained to me in detail what might have had happened with me. He said it was Interstitial Cystitis. He said the symptoms can last longer and medication is also for a long time, I was devastated. But the doctor said it was a normal disease for many people and asked me to join a group to see so many other people like me. Finally, I could see so many people out there who could feel what I was feeling throughout the whole year. Finally, I got the hope from Doctor and Interstitial Cystitis India WhatsApp group who gave me and my husband hope that everything will be normal soon and one day we will be together and I could eat what  I want and go where I like.

I don’t know why after cystoscopy in Nepal they couldn’t find my problem. Maybe the lack of updated knowledge in them or because of the un-updated technology we have. I came to know about some ladies who are having the same symptoms as me go to Shaman (Jhakri). It is a myth But  I also went to temples and shaman to check if I was cursed because of the pain and suffering and rushing to washroom every hour I had no hope. I saw in a long queue of people in Homeopathy with others who were seeking help with the similar condition of mine. Even when I was in Dubai no doctors gave me any proper result or any proper food diet to minimize my pain. I don’t know if it is due to lack of information or awareness about this condition of Interstitial cystitis but why it took me so long time and so many hospitals to find about it. The big question for me is what is the precautions and how did it happen to a person like me who is always hygienic and why me??????

Rare Global Advocacy Leadership Symposium 2019

"A rare disease is rare but the global rare disease population is the third biggest population after China and India," said Nicole Boise, the Founder, and CEO of Global Genes during her speech at the Rare Global Advocacy Leadership Symposium. She also added that rare diseases impact more people than Cancer and AIDS patients combined, therefore #rareisnotrare. 

Nicole Boise, Founder and CEO Global Genes

This was for the first time that the Patient Advocates in India came together for a meeting. The event was an eye-opener and a lot of knowledge sharing happened. The resolution was taken to request the Government to make changes in their existing programmes. Each disease group spoke about their unique challenges and finally, a common agenda was set to accommodate all diseases under a common umbrella.

Patient Advocates

Founder of Interstitial Cystitis India Balaka Basu was also present in the meeting and she raised the issue that a common portal should be created for patients where they can seek help for their conditions. She also added that MBBS syllabus should include a special paper on rare diseases so that a better awareness among the medical fraternity can be created. 

Arindam Moitra from Indian Alliance of Patients Group (IAPG)

Balaka Basu, Founder of Interstitial Cystitis India

All the patient groups agreed that research is required to find cure and treatments for the diseases. Clinical trials should be waived for a few groups of patients on compassionate ground. An action plan was also chalked out under the leadership of ORDI Founder Prasanna Shirol and Co-founder Harsha. Patient's groups have taken the responsibility to take specific action in the next quarter. 

Mr. Prasanna Shirol, Founder ORDI

Group Photo