New to Board

[mom_0f_4]

Hi everyone. I'm sorta new to the board. I've actually been coming here to read all of your messages for the last few months, but I haven't posted. I'm in the middle of a flare, so I figured now was as good as time as any to say hello.

I was diagnosed with IC on July 29th of this year, but I've been dealing with it for over a year now. My symptoms got worse in March and I went on bed rest for about a month. Of course, as most of you know, the doctors didn't have a clue as to what was going on. They sent me for x-rays, labs, mri's and an ultrasound. They found a cyst on one of my ovaries and thought that was the problem ... of course, they were wrong :cussing:

I finally went to a urogynocologist in May. At first he thought it was some type of infection, worse than a UTI so he put me on doxocycline for about a month. As soon as the meds were stopped, the pain was back, full force. I dealt with the pain as long as I could, :headbang::headbang:then finally went back to the doctor.

On my next visit, he performed a hydrodistension in his office with no general anesthesia. Yeah, it was very painful! The saline bag was not even a fourth of the way empty when my bladder felt like it was going to burst. They stopped the procedure, but the doc had already seen some of the hemorrhages. He put me on Elmiron and made another appt.

I think I was in denial for a while because I didn't change my eating habits, but after the next flare, I started following the diet more carefully and still do. My flares last a long time when I get them.

We recently moved, so now I have to find a new dr and get my insurance switched, but as soon as I do, I am going back to the dr to see if he/she can give me some more meds to deal with the pain. I don't like taking meds, but unfortunately, thats what we all have to rely on, at least until there is a cure which I am hoping and praying for everyday. I am currently taking Elmiron and I take azo tablets when I have a severe flare.

Sorry this was so long. There so much more I have to say about it, but I've probably bored everyone enough :smile tee Thanks for taking the time to read my story. I look forward to talking with everyone. Any advice would be appreciated.

[bluetou]

HI there, welcome!!:smile tee
I too am somewhat new to the boards too.....

I hope you are settling into your new home ....lots of unpacking I am sure.

As far as pointers go..I can not stress enough to try and stick to the IC diet, drink lots of fresh water.

I myself am on no medication, I am TRYING to go the natural route.

Good luck trying to find a new doctor.

Peace
:pray:

[elamar]

These two meds are very helpful for IC. I take the generic of urelle which stops the spasms to reduce urgency and frequency. It also had an antiseptic in it which santizes the urine - hence your urine turns blue while you take it! The med is called utira-c. Your doctor's office should have free samples of both of these for you to try. Mine gave me a two week supply of each to see if I could tell any difference. I couldn't tell any difference so we went with the utira-c. You might want to add some natural stuff in the meantime - I do buy the cystoprotek. I think it helps, and I am not able to take Elmiron. Also, my doctor has me take fish oil capsules (2000mg per day). She swears she has had patients go into remission with these alone (I've been taking them for several months with no suck luck! But they are healthy to take). Also flaxseed oil capsules help reduce inflammtion. I also take generic atarax at night. Right now my doctor has me on 2 mg of valium 3 times a day but I really don't feel any difference from it. I have decided to wean myself off - I have cut back to twice a day and in another month will take it just at bedtime. With the atarax and valium at bedtime - I fall asleep fast! I also sleep longer and better. Many on here might recommend Elavil. It didn't work for me for pain - none of the "nerve" type drugs ie, nuerotin, lyrica etc didn't work for me. None of my doctors have allowed me to have opiate pain meds. The only thing I've been given directly for pain is ultracet (generic). It doesn't eliminate the pain, but is helpful in reducing it. Any doctor can give you a prescription for that since it is non-narcotic. That's all I can think of for now. You can look at the alternative section for ideas also. I'm sure you are aware of the diet. Try to avoid the biggies like coffee, vinegars and anything really acidic. There is also pre-relief available at many drug stores (I can only find it at Walgreens). You take it with foods that might cause trouble. Sometimes if my bladder is burning, pre-relief helps get rid of that burn. I also sip on club soda in the afternoon and find it soothing. It took a little while to get used to the taste, but it has baking soda in it which again helps with the burning feeling. Some people might recommend Marshmallow root tea - I used it for months with no change. It didn't make me worse, but really didn't help me either! I hope you get your new insurance soon. Good luck to you.

[traceann]

I just wanted to say :welcome: to the boards! Glad you jumped on in and decided to post ;) It's a great place for support and information. :)

Hugs,
Tracey

[leelee88]

Hello and :welcome:Also welcome to bluetou! Glad you both found us!!