I have been diagnosed with interstitial cystitis (IC) since 2005. I felt relief when the urologist gave a name to the condition that had been affecting me daily for the previous fourteen months. That was until finding out that IC is not curable and the treatment options are limited. I struggled with the weight of knowing that a chronic condition would not only affect my life but the life’s of my children. In order to be strong in the face of a chronic pain condition I did lots of research. With that knowledge and the help of my urologist I use the following coping strategies for the chronic bladder pain I suffer.
IC causes inflammation of the bladder which leads to frequent urination, burning with urination and pain of the bladder and pelvic region. Because of the inflammation acidic foods and drinks cause a reaction and lead to worsening of the symptoms. So I watch everything I eat and drink to avoid acidic foods (citrus, caffeine, tomatoes, spices, etc…) this way I have some control over the disease.
Avoid Urinary Infections
Since the symptoms of IC can be very similar to a urinary tract infection, except antibiotics won’t help, I found it hard to tell when I have one. Not knowing I have one has lead to several kidney infections. To protect myself I take showers instead of soaking in a tub. I use soap free of perfumes and dyes and always urinate before and after intercourse. Infections cause flare-ups, which are a sudden increase in symptoms that can last days to months.
Keep an Open Mind about Treatment
While there are medications to treat symptoms of IC there is only one medication that is specifically for the treatment of IC. I try different medications even though the side effects make me tired a lot and don’t keep me completely symptom free. Also bladder instillations are a treatment that is available. While at first I was nervous about having chemicals placed directly into my bladder I knew that I had to try everything. That included aloe vera gel drinks. Let’s just say that drinking aloe vera gel is what you would expect, the consistency of hair gel and a terrible taste that seems to never go away. Yet the hope of being pain free and being able to held urine long enough to reach the bathroom makes me keep going.
Look at the World in a New Light
I have to admit it is hard not to give in to the darkness of living with an incurable condition. IC affects my entire life. There are times when the pain and pressure are so bad that I can barely function. The nights when I am up and down three or four times to use the bathroom, causes a lot of aggravation. Yet every day I remember that interstitial cystitis is not terminal. That I have a loving and supportive family that refuses to let me drown in sorrow. Having to accept that IC has control over so much of my life but I won’t let it defeat me. I want to be strong for myself and those around me. I want to show them that even in the grasp of disease there is hope.
I stay updated on the latest news, research and clinical trials that involve IC. I have also given myself a goal to keep moving forward by sharing the knowledge I have of interstitial cystitis.