I have bladder disease called Instertital Cystitis (and no it's not contagious and it won't kill me either so don't worry). I was afraid of saying this in my previous journal but it doesn't seem to be that well known and I feel the need to speak out about it.
It all started when I was 14 and I was just starting my freshmen year in high school. I had trouble urinating because it would get stuck and some of my teachers used to think I was ditching class. I went to a pediatric urologist and he said it was only anxiety. It went on like this for 6 years and I had no idea what was wrong with me. I felt angry and depressed when the person in the stall next to mine would be in and out in a matter seconds while I would be still sitting there.
Last year I started having stinging like pains and the doctor thought it was probably a UTI so I went on cipro and nothing changed. The pains reoccurred again and they gave me medication for old men with a leaky bladder which was the exact opposite of the problem I was having. I cried my eyes out refusing to take it and demanded that I see a urologist again. I was sick of my problem and didn't wanna be someone's guenia pig. I went back to my doctor to discuss my problem and at first she thought that I might have urinary retention but she wasn't sure.
Then finally I got to see a new urologist and he seemed very professional and easy going. He wasn't sure what was wrong with me so for 4 weeks he had me keep record of the ounces of water I drank and the ounces of urine I peed. When I gave him the results he noticed that the amount I was going each time wasn't enough despite drinking a lot. Then he decided to do a Cystocopy and a hydrodistention which basically means it's a kind of surgery where he is going to look at my bladder through a scope and then stretch it by filling it with water to see if the blood vessels in the bladder bleed. Of course I was knocked out.
That was the surgery I had last Friday that I mentioned in my previous journal and that I had an uncurable condition. What I didn't say though is that this uncurable condition is the bladder disease I mentioned at the beginning of this journal entry. When looking in my bladder, my urologist noticed that the protective lining in my bladder was depleted. Without it's protection, the walls of my bladder become irritated by the urine. This was the reason why I had trouble going. Now I have begun my road to recovery after 6 years of hell. I am currently on medication that I will most likely be on the rest of my life that is supposed to help restore my bladder. For now I still have trouble but I'm getting by. I might have the same surgery again in 6 months.
i would be lying if I said I wasn't scared but at the same time I feel confident because I'm not alone. I have the support of my friends and family. I especially feel grateful to my bf
for being so loving and supportive. I know he'll take good care of me when I become his wife someday. And to one of my best friend's
for being a great friend and so supportive. and to all my friends here, thank you. I also want to thank my urologist and all the nice nurses at the Kaiser hospital in Ontario.
I am thinking about making a video about this but I kept putting it off due to feeling nervous. But anyway I suppose you are probably wondering why I have decided to post this journal. Well my main reason is because as I said before, I feel that this disease is not well known and there are many people out there like me who go on for years and years without knowing what is going on in their body. I have felt that kind of lonilness for all those 6 years. Researching online on my own never helped either. This disease is common in mostly women but it can happen to men too. If there is a way I can help I at least want to spread awareness about it so that no one else will have to endure the same kind of pain that I have as well as the many other IC (interstital cystitis) patients have had to endure. To be honest, I never even knew it existed until my urologist told me about it.
For more information about IC, click this link here www.ichelp.org/getthefacts#.U_…
My road to recovery is just beginning and I feel ready. I am not sure what will happen in the future but I hope to conquer my IC and maybe get cured too someday. But even if a cure isn't discovered during my lifetime then I hope at least the future generations will find one. Until then I shall live my life and make Walfas videos for you guys.
Thank you so much for reading.
" One thing is certain - IC is not
'all in your head' " -- Interstital Cystitis, Krames Patient Education