Blog Mission

I was diagnosed with Interstitial Cystitis (IC) in 1995.  After a year of going to doctor after doctor, I finally received my IC diagnosis.  I was so happy to have the name of this disease that had been tormenting me for months on end.  I just knew that with the disease identified that I could get the needed medications, treatments, etc. and get back to living my life.

1542000498722What I was not prepared for was the feeling of isolation and lack of substantive help from the medical community I would encounter as I struggled to get a handle on this disease.  Fast forward 20+ years and I am still trying to elevate my day-to-day life from one that could be described as a struggle to one where I can be happy.

I am constantly researching the latest, greatest and even wackiest ways to “beat” IC.  I just know there are answers out there.  I say answers with an “s because I think I may respond to something you may or may not or you may need two to four things to get these symptoms under control where I may need some other combination.  I am even willing to say I believe there are CURES out there waiting for us to find them or maybe the more “medically correct” way of saying this would be to say I believe we can find ways to get this disease in remission.

The reason I am writing this blog is I want a place where I can document how something is or is not working for me when it comes to getting IC under control.

I also want to hear from you, the readers, and find out the same.  I think if we collectively pull our stories of successes as well as our failures on this blog, maybe we can start to make a real difference and “BEAT” IC!

27 thoughts on “Blog Mission

    1. Mike – For me, Elmiron did not provide any relief. I was on this drug for over a 6 month period years ago and then a couple of years ago. My symptoms did not improve so I quit taking Elmiron; however, there are many people who have had a lot of success taking this medication. I plan to post more information on Elmiron in the near future. Reach out to me if you have any specific questions about my experience with this medication.

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  1. I really like your upbeat and positive attitude. It takes that and then some to deal with any chronic illness. And keep researching on your own – I have found over the years that I have had to keep up on my conditions and symptoms because the doctors often drop the ball. I look forward to following your blog and thank you for visiting mine!

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    1. Lydia, thank you for your words of encouragement. I totally agree that each person needs to be in charge of his or her health journey. Researching new pharmaceuticals, treatments, procedures, alternative remedies, etc. is key. New research is being done every day. I am so glad you are following this blog. Your input is appreciated!

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      1. You are right in saying remission. I have done things that set it off again but it only takes me a few days now to get it straightened out. I can eat just about anything now. But stress can set it off again.

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  2. clare A

    Hi

    I saw your response to a blog on CUTI Australia. I’m in the UK and am also a patient of Professor Malone Lee. My story is very similar to everyone else. Terrible infections that caused me to be bedridden with a couple of hospital admissions. I’ve been seeing the Professor since May and although i have had a couple of big flares, I am now symptom free and getting my life back. Like all his patients I am on Hiprex and two long term antibiotics. I seriously don’t know if I would still have been here if I hadn’t found him.I thought my life was over!

    I am more than happy to share my story or support anyone going through this awful disease.

    Liked by 1 person

  3. Rosey

    Hi just joined the IC site looking for some support as my bladder has flared up yet again . Would like to know more about Professor Malone Lee and his treatments for IC …

    Liked by 1 person

  4. Mary King

    Hi Mazoli
    Just read your last post on BladderhealthUK. What new meds are you on? I am on Ranitidine but it doesn’t help pain. What’s good for painful burning? No infections. Great blog thanks

    Liked by 1 person

    1. Gabapentin. I am slowly increasing to get to the appropriate dosage. There is a study that is beginning this December related to IC and Gabapentin. This drug is typically used for Epilepsy and Diabetics. I am getting some pain relief.

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  5. I think that it’s great that you’re blogging about your journey with what sounds like a horrible disease. Ever since I was diagnosed with ALS, I have had many, many bladder infections. I can only imagine what you go through on a daily basis dealing with that kind of pain. Keep up your research and I believe that you will find what you need to get into remission. Best of luck xo

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