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I know I have'nt posted here in a while, but wanted to share with those who may be just learning how to manage their IC that it can get better!
So, here's my story.
I've lived with IC since 1986 but wasn't diagnosed until 2010. In the meantime, 24 years to be exact, I was passed around from urologist to urologist, who all came up with "diagnoses" and proceeded with barbaric treatments. For about 3 years it was "recurrent UTI" and I was treated with antibiotics constantly. Then when the pain still did'nt go away, then I was sent to another uro who diagnosed "narrow urethra" and the treatment for that was urethral dialation, which was performed by inserting stainless steel rods in my uretha, each time each rod was gradually larger. That went on for about 15 years or more. Then off to another uro who diagnosed "urinary dysfunction syndrome" and gave me blood pressure pills for it (incidentally, he never even examined me). When that did'nt help I demanded a new uro and fortunately, (here's the light at the end of the tunnel) they had a uro/gynecologist just join their team. She did urodynamics, then immedialtely scheduled me for hydrodistention w/ cystoscopy. After that procedure was completed, my insurance carrier changed and I could no longer see that doctor (she was at Kaiser). So I had the procedure done but still did'nt know my diagnosis. So, on to a new general practitioner, and it takes several months for Kaiser to forward my records to my new GP. So finally, last October, they receieve my records with the diagnosis of IC. To be honest, eventhough I knew IC was a possible diagnosis when I had the hydro/cysto done, all I could mentally feel upon learning that it actually was IC was relief. I finally had a viable diagnosis to work with. Then I had to be referred to a new uro, and wasn't able to get an appointment till the week after Christmas. Luckily, this new uro is one of the best in this area. He examined me, reviewed my records from Kaiser and told me, that in addition to IC I also had severe bladder prolapse. He was very pragmatic in his approach to treat my symptoms. He prescribed Elmiron, hydroxyzine, cimetidine (an acid reducer) and the IC diet. I had surgery on 4/26 to have my bladder prolapse repaired. I have to say, just not having to deal with the symptoms of the bladder prolapse has significantly improved my quality of life and has helped me to focus more on the IC symptoms, as at times I could not tell if my pelvic pain was caused by the IC or the prolapse. Now, after 7 months of treatment for IC, I can now say that I have my IC under control!
I did stop drinking caffiene (I used to be a heavy coffee drinker, but now I have switched to a low acid decaf and have only 1 cup a day, with cream). Caffeine and aspartame (which by the way is said to convert to formaldehyde at 84 degrees farenheit) I have learned are major triggers for my IC. Also, for years, I drank cranberry juice thinking it was good for my bladder, but have since stopped. The acid reducer, PRELIEF, has also helped tremendously. I feel like I have my life back. I can enjoy an occasional caffiene free soda, as well as a glass of white wine or a beer with no problems.
There are some days though, that I wake up and feel that "IC twinge" and I have found on those days if I drink extra water and be careful about what I eat it usually subsides within hours. For once, I feel I have control of this disease, rather than this disease having control of me as it had for more than 20 years.
To my sisters and brothers out there with IC, DON'T EVER give up hope! It can get better!
And I have found that when I found out what worked for my IC symptoms, that having a mindset of gratitude helped tremendously in my mental outlook on this disease. Don't ever stop seeking out the correct treatment for you, and NEVER GIVE UP!
So, here's my story.
I've lived with IC since 1986 but wasn't diagnosed until 2010. In the meantime, 24 years to be exact, I was passed around from urologist to urologist, who all came up with "diagnoses" and proceeded with barbaric treatments. For about 3 years it was "recurrent UTI" and I was treated with antibiotics constantly. Then when the pain still did'nt go away, then I was sent to another uro who diagnosed "narrow urethra" and the treatment for that was urethral dialation, which was performed by inserting stainless steel rods in my uretha, each time each rod was gradually larger. That went on for about 15 years or more. Then off to another uro who diagnosed "urinary dysfunction syndrome" and gave me blood pressure pills for it (incidentally, he never even examined me). When that did'nt help I demanded a new uro and fortunately, (here's the light at the end of the tunnel) they had a uro/gynecologist just join their team. She did urodynamics, then immedialtely scheduled me for hydrodistention w/ cystoscopy. After that procedure was completed, my insurance carrier changed and I could no longer see that doctor (she was at Kaiser). So I had the procedure done but still did'nt know my diagnosis. So, on to a new general practitioner, and it takes several months for Kaiser to forward my records to my new GP. So finally, last October, they receieve my records with the diagnosis of IC. To be honest, eventhough I knew IC was a possible diagnosis when I had the hydro/cysto done, all I could mentally feel upon learning that it actually was IC was relief. I finally had a viable diagnosis to work with. Then I had to be referred to a new uro, and wasn't able to get an appointment till the week after Christmas. Luckily, this new uro is one of the best in this area. He examined me, reviewed my records from Kaiser and told me, that in addition to IC I also had severe bladder prolapse. He was very pragmatic in his approach to treat my symptoms. He prescribed Elmiron, hydroxyzine, cimetidine (an acid reducer) and the IC diet. I had surgery on 4/26 to have my bladder prolapse repaired. I have to say, just not having to deal with the symptoms of the bladder prolapse has significantly improved my quality of life and has helped me to focus more on the IC symptoms, as at times I could not tell if my pelvic pain was caused by the IC or the prolapse. Now, after 7 months of treatment for IC, I can now say that I have my IC under control!
I did stop drinking caffiene (I used to be a heavy coffee drinker, but now I have switched to a low acid decaf and have only 1 cup a day, with cream). Caffeine and aspartame (which by the way is said to convert to formaldehyde at 84 degrees farenheit) I have learned are major triggers for my IC. Also, for years, I drank cranberry juice thinking it was good for my bladder, but have since stopped. The acid reducer, PRELIEF, has also helped tremendously. I feel like I have my life back. I can enjoy an occasional caffiene free soda, as well as a glass of white wine or a beer with no problems.
There are some days though, that I wake up and feel that "IC twinge" and I have found on those days if I drink extra water and be careful about what I eat it usually subsides within hours. For once, I feel I have control of this disease, rather than this disease having control of me as it had for more than 20 years.
To my sisters and brothers out there with IC, DON'T EVER give up hope! It can get better!
And I have found that when I found out what worked for my IC symptoms, that having a mindset of gratitude helped tremendously in my mental outlook on this disease. Don't ever stop seeking out the correct treatment for you, and NEVER GIVE UP!
Namaste 
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