New IC'er

[sbelle474]

Hi everyone! I have a question. I have not "officially" been diagnosed with IC, but have had the symptoms for about a year. I am having a hydrodistension on the 12th to determine if I have it, and then get treatment from there. I had a DMSO yesterday for the pain (pyridium, sanctura nor uro blue were not helping to control my flareup).
From reading everyone's stories, I do believe I have a milder case of IC, as I am able to work fulltime, but just have chronic pain. Does IC get worse over time, as in a progressive disease, or does it normally just stay at the same level when you are diagnosed? (Hopefully this makes sense).
I just want to hope that once I am diagnosed by my uro, who is wonderful, that the medicines that we try will help me feel normal again.
Anywhoo, anyone's advice would be welcome! Have a wonderful weekend! :)

[Babs RN]

Mine has gotten worse over time, but I think that is more due to improper intervention than the disease progress itself.

Hugs,
Barb :grouphug:

[SandyRN]

:welcome: to the board. It's a wonderful place and I don't know what I would do without it!

When you say you have chronic pain, where is your pain? I do have to say you are very lucky that you can work full time. :) Hopefully you will not have IC but if you do, you can find the answer to just about any question you have here.

There are varying opinions on whether IC is progressive or not. Most reports say it is not, but what I have found is that my symptoms vary in severity. There are days when the only problem I have is that I have to pee 30-35 times a day, (which is a HUGE problem) and the next day I might have to go that many times, but it hurts every single time I go. I also have bladder spasms every day, but some days they are worse than others. There are days when I am curled up on the couch from the pain/spasms, and other days when I could actually mow the lawn if I wanted.

I tend to pay for days that I over extend myself, or when I am stressed.

Don't know if I answered your question, but that is some of my experience with this disease.

I wish you luck, and again, welcome to the board!

Sandy

[traceann]

Hello and :welcome: to the boards!!! Gald you found us! This place is a great source of support and information!

I am also happy to hear you are getting treatments that seem to be working for you! That's so important, as the time before diagnosis and starting treatment I believe is the worst! :headbang:

I too was nervous about "progression", but from what I have heard and read here, it is my understanding that progression while it does sometimes occur, is pretty rare. I think my "progression" was the almost year (ugh) I went without going to the doctor until my "symptoms" got so bad I couldn't ignore it any longer. That was the worst time in my IC history for me. But once I found my med combo, things have been steadily improving, albeit slowly...nothing quick with IC, lol.

Here's a couple links for you to the Patient Handbook here on the site and to the IC Diet foods list here on the site, if you haven't found them already! ;)
The diet is one of my hugest tools for keeping my bladder happy, it's really really helpful!!!

Patient Handbook:
http://www.ic-network.com/handbook/

IC Diet Foods List:
http://www.ic-network.com/handbook/diet.html

Once again, welcome and hope to see you around the boards!!!!

Hugs!

[ICNDonna]

:welcome: to the IC Network.

To answer your question, everything I have read indicates that only a very small percentage of IC patients progress. In my own case, my worst symptoms were before I was diagnosed and treated, and before I found which foods and drinks are a problem for me. I have had diagnosed IC for thirty years now so I think if I were going to worsen, it would have happened by now.

I worked full time with IC for over twenty years before I took an early retirement when my husband was able to retire.

Donna

[patricia1]

While most people do not get worse once treatment is started, I believe, like Barb, mine got worse because I could not get the proper treatment for my disease. For me it took 5 yrs. That said if you do have IC and it is mild like you believe, once you start treatment you should be able to live a somewhat normal life. Best of luck to you and let us know how your hydro goes... :grouphug:

[Ginny]

I think we are all so different that it is impossible to give you an answer to that. I have had IC for 20 years. I don't know if I could even give you an answer for myself.
I have continued to work full time for all those years but it has not been easy. I have also ended up with many other illnesses so I have gotten worse but can't say the IC has.
I do not follow the diet because of other illnesses that also require dietary restrictions so I am sure that makes a big difference.
Good luck. Sorry it is not an easy answer.
Ginny

[Katrina]

:welcome: Most cases are not progressive and getting diagnosed early (some of us are 5-10 years before diagnosis) helps a lot.

I believe I got worse in time....but I also had surgeries and had no idea what was wrong with me at first. More treatment has really been able to help me none the less.
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last one is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is nexbie kit from the oldies to the newbies

Have a great weekend!