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Interstitial Cystitis (IC) Message Board
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Old 04-07-2013, 04:34 PM   #1
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tattoowings HB User
My IC story

I have had bladder issues all my life. I had frequent UTI's as a kid and was a bed wetter.
In my teens I began having frequency and urgency bladder issues. After some tests I was diagnosed with IC. At that time I had an Bladder Distention and Bladder wash and was symptoms free for many years. I remember having one big UTI around 2007 but it cleared up after a few weeks.
May of 2012 we went to the beach for the weekend. I woke up in the middle of the night with the worst bladder pain I had ever felt. Thinking it was a UTI from the water I saw my GP and got antibiotics. Over the next two months I was seen three times and given antibiotics. After the third round I realized it might be the IC coming back. I dealt with the pain the best I could and tried to drink more water and limit soda( I am a soda addict)
Due to personal issues and not having insurance for a while I did not see a urologist until Early this year. The urologist convinced me to try having DMSO treatments( once a week for six weeks. Catheterized,DMSO med pushed into the bladder and then catheter pulled)
Being catheterized was horribly painful despite trying gel lidocaine to numb the urethra before catheterizing.
The DMSO was little relief and only took the edge off the IC symptoms. He then did a cystoscopy, which was very painful and I felt very violated by having so many tubes and instrument put in forcefully. The urologist then wanted me to try Elmiron. I flat told him I did not want to wait six more months for relief and opted for another Bladder Distention and Wash with biopsies.( I go in this week for this).
I have had depression and anxiety for years and the IC being so painful I have had a hard time coping with it. When I talk to the urologist he says he want to send me to a pain specialist. I don't want pain meds. I work and am a part time student so I can't be on strong meds. ( I am sensitive to pain meds and get very lethargic for even a half of a vicodine that I had left over from gallbladder removal.
I am just so frustrated, sad, and tired of it. My biggest fear is that the Bladder distention and wash won't help and the urologist will want me to go on Elmiron. I will refuse the Elmiron due to side effects of causing anxiety( I am already taking Ativan for anxiety and don't need more anxiety) and hair loss.
I have also learned that the IC and other symptoms I have( dry mouth, choking easily while eating, and scratchy strained voice) could be symptoms of Sjogrens Syndrom. My mother also has Sjogrens.
When I asked my GP and urologist abou this they just brushed it off and said they didn't think it was Sjogrens.
Thank you for reading I know this is long but I just feel like no one is listening to me.
Any advise or information would be greatly appreciated. Are there any other treatments besides Elmiron?
I learned about a few natural rememdies ( placenta extract and marshmellow root? Has anyone tried these? I did try drinking baking soda water that a site suggested but didn't notice any relief.

 
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Old 04-09-2013, 12:19 PM   #2
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Phogan26 HB User
Re: My IC story

I understand what you are feeling and feel with and for you. I would like to help you as much as I can. I have been dealing with IC for 3 years and have found nothing to help me and I have been to the top doctors in the country that just work on IC and they have said I am the youngest male and the worst case they have every seen. I am not down playing what you are telling everyone I am just trying to help you get through this. UTI's are not a symptom with IC and this is something that people get wrong all the time. People also think that a doctor can tell if you have it by asking questions and this is wrong to. The only way you can know if you have this is by going to a urologist and having a CYSTOSCOPY WITH HYDRODISTANTION which is the only way someone can find out if they have IC. This shows the doctor the amount of bleeding on the bladder wall/inflammation in the bladder/ and also shows how much CC of water your bladder can hold. I also have tried everything that is out there for my IC and have found nothing to help me. I have spent and my insurance in the last 3 years has spent over $500,000.00 in treatments. I am telling you this because I am willing to hear what people have done/tried to see if I have done it and if it helped or not. I know how you are feeling and it is very hard when people don't know how we feel everyday with this. If there is any questions please let me know and I will answer them or find the answer for you.

 
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Old 04-13-2013, 07:28 PM   #3
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tattoowings HB User
Re: My IC story

I had the Hydrodistention when I was a teen and again yesterday. I feel ok today but having residual pain. I will have a follow up apt in a week or two to discuss what he found. I really hope the pain is going to go away like it did before.

 
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Old 04-18-2013, 06:35 AM   #4
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Phogan26 HB User
Re: My IC story

It sounds like what I am going through, I would be fine with going pee all the time and the feeling of being full in my bladder. My biggest thing sounds like what you are saying is the pain. If I could just get the pain to go away I would just deal with everything else. I hope it gets better for you in the weeks, months to come. I use feel ok after the Hydrodistention just have pain. Good luck and keep posting on how you are doing.

 
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Old 06-18-2013, 08:11 AM   #5
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jewels2312 HB User
Re: My IC story

Why don't you speak to a pharmacist about the potential side effects of Elmiron? If you have insurance that covers it, I would try it, even if it takes months to take effect. I am also very sensitive to medications, and I can tolerate Elmiron. As for the hair loss, my pharmacist told me this side effect happens in 4% of users. So that is minimal.

And yes, there are other options besides Elmiron. My sister is a doctor and before my diagnosis, I was told the urologist prescribes antibiotics for 3 months for IC. My cystoscopy revealed damage to my bladder lining, and I was prescribed Elmiron for 3 months instead.

Hope it helps and we can all find relief!

Last edited by moderator2; 06-18-2013 at 08:14 AM. Reason: posted disallowed website

 
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