Wind Surfing

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IC Smart License PlateI was diagnosed with Interstitial Cystitis (IC) in 1995.  After a year of going from doctor to 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.

Sitting SadWhat 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 where I can be pain-free.

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.

One of the main reasons I have this blog is to document how something is or is not working for me when it comes to getting IC under control.  I will NOT give up.

I also want to hear from you, the readers, and find out how you are doing.  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!

53 comments

    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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  3. 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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  6. 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.

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  12. 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 …

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  14. 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

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    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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  15. 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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  16. You sent me running to Dr Google for background info on IC. It’s sounds as if it can be horribly painful and debilitating in many ways.

    I’ve been living with Crohn’s disease since 2005, so I understand what it’s like to be on a journey seeking the best possible ways to manage a chronic illness. As others have indicated, stress is the main trigger for my flare-ups, and as you’ve stated, there seems to be no single medication or set of therapies that works for everyone. We all have a unique physiology and mindset so it’s up to each of us to research and use the trial and error method in a effort to find what works best for each of us.

    I’ve found that yoga–both the strengthening and breathing exercises helps me immensely. Wishing you all the best in your search for living the best, and most pain-free, life possible!

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  17. Happy new year, Mazoli! Came over to read your profile and what an incredible story! I hope you’ll beat IC completely one day. It is wonderful that you’re willing to share something so personal online. I am sure that your writing will help many people out there.

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  18. Please try ‘Colostrum – LD Liposomol Delivery’ by Sovereign Laboratories or Bovine Colostrum by ‘Immune Tree Colostrum 6’ These food supplements have really helped me heal from IBS, Systemic Candida and IC symptoms. Take it on an empty stomach twice a day for a month and you should start to feel the benefits. Don’t just focus on healing the bladder, strengthen your immune system and everything else should follow.

    I pray that 2019 comes with many blessings for all who are suffering with IC!

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    1. Thank you so much for your suggestion about Colostrum. I will definitely give it a try. I will let you know how it works for me. I like the approach of strengthening the immune system. Please continue to contribute to my blog. I really appreciate your help. Advice like yours can truly make a difference in a person’s life. Thanks, Mazoli

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    1. I am also in a flare. And yes I do not think most understand. Please follow my blog and participate. We IC’ers need to stick together and support one another. This is the most difficult challenge I have faced in my life. I want my blog to be a supportive environment where we can reach out to each other. I had a reader recently contact me and just wanted to talk to someone who understood what she was going through. Take care and please keep in touch.

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  20. I’ve had mild cases of IC and also vulvadynia in the past. I say mild because it’s been years since I’ve had more than an occasional flare up, but I remember there were times in my younger years when they did not feel minor. The vulvadynia appeared and overlapped with IC after my divorce and what I call “the rebound from hell” which was about 16 years ago. It was a very unhealthy relationship. It seemed to start with an infection that I thought wouldn’t go away. I know that stress played a big role. What helped me most was physical therapy specifically for women’s issues where the practitioner had me do a lot of kegels and used biofeedback to reduce the resting tension of my pelivc/vulva area. I believe the relaxation part was crucial for me and that holding so much tension in my pelvic area prevented my body from healing. That’s just my experience. I know others have more complicated conditions. I wish you peace and healing.

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  21. Wow, not an easy path. Doing your own research is very smart, and I think maybe many of the commenters have great wisdom and experience to share! Will pray you find answers that work for you, and will follow this blog as I have a friend with this condition.

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  24. Google Medical Medium.
    Anthony William I found this book very informative.
    He says the Epstein Barr virus can cause numerous problems. You may not even know you have had it and with most people it lays dormant until something triggers it off.

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    1. Pauline, thank you for that information. This disease has really impacted my life. Every day is a challenge. Many people with this disease cannot work. I keep hoping one day I will figure out how to get rid of it or minimize the symptoms.

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  26. While i havnt tried it yet, i’ve been researching DMSO. It has been used by the medical profession (limited) for many years to successfully treat IC. There are medical papers out there that back up the claim… so i’d encourage you to check it out and research it for yourself. Its somewhat unconventional, yes, but the medical data exists and its been used by the medicos, so it cant be all that bad…

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    1. Kristin – Thanks for the information. I have tried DMSO instillations a couple of years ago. After voiding after 30 minutes, my bladder started to spasm uncontrollably. It was awful; however, I do know people who have had DMSO instillations help them tremendously. In 1995, I had some sort of bladder instillations over a 4 week period and my bladder did NOT spasm but I did not get any sort of relief. Thank you so much for visiting my blog. Please continue to participate. The more we share the better off we will be. 🙂

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