Recently diagnosed

[MICHELLE744]

Hello everyone,
I have been diagnosed with IC for about 3 months now. When they did my cystoscopy, they said that I had mast cells all over my bladder and they are not cancerous. They also gave me a bladder installation treatment and said that my bladder cracked and bled. (That was pretty painful for a couple of days). Then they put me on Elmiron. The bladder installation seemed to work for a 1 month and then the pain from my bladder came back. I also am experiencing pain near my left ovary. Went back to the Urologist yesterday and they now have me on Vesicare and gave me Vicodin for the bad days. I have been trying different foods at different times to rule out foods that cause flare ups and no of the foods seem to be effecting my pain. My husband doesn't seem to understand that I don't feel like being intimate with him because It really hurts. I kind of feel like I am all alone with this issue. No one but my mother seems to understand what I am dealing with. Thankfully, I have a job that doesn't require me to be there all day. The bathroom trips 20 times a day don't bother me as much as the pain from my bladder does. What does everyone else do for the pain?

[Briza]

hi welcome to the board!
sorry for your diagnosis. you should find lots of support here as well as tips on how to handle your pain.
the diet is very important for most of us. it is usually suggested to stick with only the foods in the lefthand column for a month or more before systematically trying to add things from the other columns back. for me it took a good year before my pain was under control enough for me to determine which foods were my triggers. but once i finally had it figured out i saw how much the diet was benefitting me. it can take a good while for an angry bladder to settle down. that is why avoiding irritating foods is so important.
keeping well hydrated with water is very important.
cold packs and heating pads are used a lot around here!
the vicodin should help. if you are experiencing burning and/or spasms you might consider pyridium, which is availabe OTC as AZO Standard and Uristat.

[Mothergoose]

I am with Briza on the diet you have to cut out everything that may cause a problem or you can not tell what is causing the problem, many people find in time they can add back in alot of the foods. but you got to do it all or nothing. I was like you at first and cut out a few things for a while and nothing changed so I reasoned those were not the problem foods it was not until i ate no problem food that I could tell.

MG

[NancyB]

Dear Michelle -

I am sorry that you have IC, but I am glad that you found us. This site is enormously helpful and the people wonderful. Just post if you have questions.

I wanted to be sure to tell you that it is important to keep yourself well-hydrated. Concentrated urine will make your bladder hurt a lot more than diluted urine will. You want to make sure to drink ONLY spring water that you can find in the grocery store. There are many kinds. You want the kind that is ONLY water with nothing added to it. Some well known brands are Ice Mountain and Crystal Geyser. You will just have to try a few until you find one you like and that likes you. Make sure you stay away from coffee, regular tea, citrus juices, cranberry juice, sodas, and tomato juice, at least for the foreseeable future.

Hope this information is helpful to you.

NancyB:)

[ICNDonna]

:welcome: to the IC Network. I also agree that giving the diet a try for at least six to eight weeks is a good idea. You'll find the link to food and drink lists below in this post. It may take a little time to determine which foods are a problem, but it's well worth it.

Sending healing thoughts,
Donna

[VickiB]

Hi Michelle,

I just want to add another welcome to the ICN, and say hang in there. Things are usually the roughest before & following the diagnosis. Most of us find that with some combination of treatment, diet, and/or tricks, we do get to a better place symptom-wise. Odds are you will too!

Vicki

[MICHELLE744]

Thank you everyone for your kind words and support. I am still doing the diet. I feel like there is nothing out there to eat now! :dizzy:

[Mothergoose]

The diet gets easier as you go along, it is really tough to begin with but after awhile you can start trying to add back things in one at a time and see how you do with it, and I find I bascily make everything from scratch with products I have bought that I know are okay for me.

It is really different for everyone with no rhym or reason whey some people can eat somethings and others not. Sometimes if you have not irritated your ballder in a while you can get away witha bit of an irritant.

To begin with thought you really need to be strick for at least a few mons before you will be able to identify problem foods.

It is hard but believe me it is worth the effort.

MG

[KarenAnne]

:welcome:Michelle,
It took about two months for my bladder to settle down on the diet. Don't give up. It will help. You'll be able to add things back in. I use organic when I can & have gone back to cooking the old fashioned way. There are great recipes on here.
Look into physical therapy for the pelvic pain. It has helped me. I could barely sit or even ride in the car before PT.
Maybe your husband could look at this website with you. Hang in there. It will get better!