Hi, my name is Arun dahiya. I am 25 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 and irritable bowel syndrome. And yes there is no cure.
Ic is an illness of bladder also known as interstitial cystitis. In this disease the bladder lining get damaged due to immune response causing intense pain,burning and frequent need to pee. Sometimes upto 60 times a day.
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 no. 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 shows that everything is normal . so if everything is normal but still there is lots of pain, burning, frequent urination, food sensitivities etc. it can be interstitial cystitis. 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 , uretheral pain, frequent urination and sometimes urine retention.
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 and low oxilate greens.
To deal with ic i am on several medicines like amitriptyline, pentosan polysulphate sodium, gabapentin , tramadol, deuloxetine and tapentadol. Due to these medications i am most of the times passed out , fatigued, in a hazy fog, have put on lots of weight. But these medications help me to survive.
To ease symptoms I went through cystoscopy and hydrodistention. Where they put a scope in the bladder to look into it. They found hunner lessions. These are deep scars on the bladder that ooze blood. They were burnt down and for two days i was in 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 a lot .
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. Even after local anesthesia and pain medicines i felt like i was poked with hot searing iron rod . Though this helped me a lot. A 30 prcnt relief after five painful Years. If you don’t know. Ic is considered as painful as stage 4 cancer pain. Not a pretty site, definitely. I was suggested another treatment that is ketamine infusions for a week to help with my pain. Unfortunately, it didn’t work and got allergic reaction ( uncontrolled body jerks and acute sharp needle like pain). Frankly not much treatment options to ease out my symptoms are available now.
On a side note,living with intense pain my pain traveled to whole body and now i have general body pain too. Another autoimmune illnesses i.e fibromyalgia. 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 19 year young ambitious girl whose life turned downward 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, gastroenterologist, gynecologist and a 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 tiered 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 day care 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 get 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 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.
All i want through this post is to create awareness about the disease and see some invisible parts of the disease. I don’t want you to feel bad or sorry for me. I just want to be understood and accepted as before. And thanks for reading it. It really means a lot.