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jenluv93
01-25-2008, 12:48 PM
I have just been diagnosed with IC. I had the Cytoscope with Hydro on the 16th and got pretty picutres of my very angry red bladder. One picture looks like Mars!! Amazing stuff and what a relief!! I don't wish to have a disease I just have been through hell for 10 years and finally have an answer!!

I have been to see a million gyne's and Gastro's who kept telling me that I was fine and that it must be the other issue. So back and forth I went with a frequent visit to the ER while doubling over in pain. The ER doctor's started treating me like a junkie which was horrible!! :cussing: I even broke down crying several times, once snapping and saying I don't care about the drugs just try to find out what is wrong with me!! He looked shocked and was speechless.

I ended up having my gall bladder removed and they were truely hoping that was why I was in pain. It did nothing. Still a year later I am in soooo much pain. :help:

I had yet another laperoscopy to see if it was my endometriosis coming back and that came back perfect. All my bloodwork keeps saying I'm perfect. I was beginning to feel like I was just insane!!:bonk:

One of the partners in my Gyne's office suggested pelvic floor therapy for the pain. I started that and she turned out to be my guardian angel!!:angel:
I love her!! She actually found a new Gyne for me who on the first visit spoke to me for 1 and 1/2 hours!! Isn't that amazing!! She reffered me right away to a urologist as she highly suspected bladder. So off I went and the first visit he stated I was "textbook" for IC!! He asked if I wanted to experiment with drugs in case it was just overactive bladder or if I just wanted to ahead with the scope. I instantly responded with please do the scope!! I need to know!!

So here I am! I had the scope and sure enough he was right!! Finally!! :woohoo: Oh my GP before said I had Fibromalgia (which I may have as well) and I have always had IBS with constipation. He did not want to start me on meds as I just had so many bad reactions from Cymbalta and Lyrica (for fibro). It constipated me so bad that I didn't even have any bowel sounds!! I ended up in the hospital yet again a few weeks ago from rectal bleeding from it.

Anyway, he was hoping the Hydrodistention would help, but so far it gave me a really bad flair (which I already had from the hospital experience prior and all the tests and drugs they gave me) and I am still in soooo much pain.

Today I called him and he gave me a prescription combo of Elmiron 100mg, Elavil 10mg and Vicodin 500 mg (as needed). I'm nervous about the side effects, but work is becoming difficult as I am a secretary and it hurts to sit all day!! I'm just hoping this will give me some relief. :pray: My heating pad is my best friend and I do have an understanding boss.

How have people liked Elmiron and Elavil? Anybody taking both?
Are natural remedies safe to use in combination?
I also have been trying to watch what I eat and avoid caffene (which is really hard for me).
What are the best books?

Thanks for listening!!
Jen :hi:

SharonA
01-25-2008, 01:18 PM
Hi Jen and :welcome: to the ICN...:)

You have really been through a lot, haven't you? It really can be a relief to have a name for what is causing all those symptoms. But more important than a name is having a doctor who is willing and able to help you. I am very glad that you finally found one.

If you look at the top of this page, you will find a link to the ICShop. You will find a link to books to your left when you enter the store. All those books are excellent. Especially the one by Dr. Moldwin and A Taste of the Good Life.

I take Elavil but not Elmiron or Vicodin. Elavil really helps me. I don't know what I would have done without it.

Since you said that you have been trying to watch what you eat, I suppose you have looked at the information about the IC Diet. There are many here who have found a lot of help by following it.

:) :) :)

maryla
01-25-2008, 01:40 PM
:welcome: Jen,

I'm happy for you that you finally have some answers and it sounds like you found a great uro. Hope you find a treatment that works, Keep us posted.

God Bless,

jenluv93
01-25-2008, 01:43 PM
Yep I've looked at the diet list on the website as to what would be bad. So many things it's overwhealming!! Hopefully I will find a good new diet. Almost everything I usually eat is on the forbidden list!! This is going to be tough, but we've all made it this far so it's just one more trial!!
I'm so glad I found this place too :) I'm an information junkie so this is great!!

TexasHoney
01-25-2008, 01:55 PM
:welcome:I am sorry you have IC but at least you know what you have and you can get started treating it.

Good Luck and Take Care

Pac168r
01-25-2008, 02:28 PM
Hi Jen...
Welcome. Each person is different as far as meds...

Atarex 25 mg at night
Hydroxyznine 50 mg at night
phenazopyridine as needed
cystoprotek....2 in am, 2 in pm
Birth Control

Most important to me................Diet

You will find what works for you...

Elmiron did not work for me