I have interstitial cystitis
Living with a chronic, painful, and debilitating condition.
OUTDOORS, sports, travel, and nature make me feel settled, happy, alive, and content, but they no longer exist in my life. An incurable disease has cruelly took control of my life. I am an interstitial cystitis sufferer.
One fateful day in 2014, I had an emergency disc prolapse operation that resulted in one complication after another.
I was living in pain, with symptoms of an overactive bladder.
I had consulted dozens of doctors, who all thought it was a psychological problem, and prescribed me with antidepressant medications.
Life at that time was hopeless and depressing until I finally found an answer to my woes in the form of a consultant urologist, who listened to my story, believed in me, and diagnosed me with this poorly understood “invisible” bladder disease.
Interstitial cystitis is chronic, painful and debilitating.
The diagnosis sent me into a deep depression. Interstitial cystitis can result in a quality of life comparable to that of a person with rheumatoid arthritis, chronic cancer pain, or a person on kidney dialysis.
I struggled knowing there was no cure, or way to repair the damage inside my bladder. I was devastated, and I wanted my life back.
That was 18 months ago. It has not been an easy road. After numerous treatments and medications, which none worked and all gave me side effects, my consultant suggested that I try a rather expensive drug that is not easily available in the country.
After nine months on it, with a combination of a clean diet (I quit smoking, alcohol, caffeine and sodas), I find there is some relief, but occasionally, there are side effects and complications such as insomnia and hair loss, which I can still live with at this time.
It is my hope that more people understand how painful interstitial cystitis really is, and not to underestimate the amount of suffering we endure.
Most healthy people simply do not understand what it’s like to never feel 100% healthy.
My friends and loved ones do not understand that my pain is real, and they do not know the depth of my personal struggle. They see a woman who is perfectly healthy and happy.
Needing to be heard and understood is probably the biggest struggle I have during my interstitial cystitis journey. I am thankful that my consultant never gave up on me.
Although my life will never be the same again, the tremendous support from my doctor, who understands and manages my health condition, has enabled me to get my life back on track.
There are probably hundreds and thousands out there who have not been diagnosed and are trying desperately, as I have, to find a doctor who believes it is not just in our heads. Someone who not only knows how to treat interstitial cystitis, but is compassionate, patient and empathetic.
I feel the need to speak out, and to raise awareness about this disease, as there is no support group in Malaysia that I am aware of.
The need for better treatments, doctors, fund-raising, and more importantly, to let other interstitial cystitis patients who are suffering in silence know that they are not alone.
My hope is that someday, there is a reliable treatment or cure for interstitial cystitis, for all of us who have suffered, been mistreated and ignored, and been depressed or suicidal.
I look forward to the day when I can enjoy outdoors, sports, travel, and nature, once again.
*not her real name