Saturday, September 28, 2019

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.

7 comments:

  1. You are an incredible person Arun. It is so tough to deal with so much pain, mentally,emotionally and physically on a daily basis. And yet you are showing us that life must go on.You are one brave and beautiful girl. And an inspiration to all. Thank you for sharing your story. It is indeed very unfair that your life got hijacked by Pain. But the fact is you did not allow it to defeat you. You are fighting through it and have lifted yourself out of your shattered dreams, redefined your life and become an advocate and a voice for all those with invisible illness. Hats off to your spirit

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ESSIC 2019- Amsterdam

Excerpts from the minutes of the meeting (MOM) of the annual ESSIC meeting of 2019. Thanks to International Painful Bladder Foundation for...