New to site, Biopsy for IC in three weeks..

[kristiemp]

I have to take a moment to say how how happy I am I found this web site. I have spent a couple of days reading messages on this board looking for information and have to say was overwhelmed by the amount of support there seems to be here.

My symptoms started in December about a week before Christmas. I went to the bathroom and had LOTS of Blood in my urine. I was scared but in no pain so I waited it out until Monday and went to see my primary. I was still bleeding quite heavily (i am only 33 but had a hysterectomy about 8 years ago so any blood scared me) but only having pain upon emptying my bladder. As soon as I emptied there was this intense pain in my groin. By the next day I was in so much pain I could not get out of bed. I called my primary and was told to go to the ER. I was still having lots of blood and pain so they did a couple of x-rays and a ct scan looking for kidney stones. All the tests came back normal and even the catheter they did showed no residual urine. They gave me an IV of leviquin and told me to follow up with a Urologist. By then there was no visible blood in my urine but the doc said there was microscopic blood. He did a scope in his office, dilated my uretha and scheduled me for an IVP. As the week went on the pain started getting worse and worse and the blood was visible only occasionaly. As you might imagine the IVP showed nothing. When i went back for the followup I was told that I could possibly have overactive bladder or IC but my urine was clean. He gave me detrol LA and told me to take it for one month. If i was not better by then we could talk about doing a biopsy of my bladder to test for IC. When I questioned him about the intense pain I was in he told me he thought it was a muscle and I should talk to my primary. As you might imagine my dr told me IC was a very painful condition and called me in some Lortab 10 and made me an appointment with a different Urologist. So now I am scheduled for a biopsy on the 23rd of this month and am in so much pain i just cannot believe it. I am taking Lortab 10 for the pain and Urelief plus for the spasms, I cannot say the Lortab is helping 100%. He thinks i totally have IC and i am scared. I do not want to live on PainPills for the rest of my life but Advil does not begin to touch the pain. All of this came on so suddenly. Has anyone else experienced symptoms similiar to mine? I am so tired all the time that I am getting nothing done, I just cannot believe the fatigue. Any advice/help anyone can give me would be great. I stupidly laid off the coffee and started guzzling cranberry juice by the gallons in hope that would help me only to read on here that is one of the number 1 donts. I also just started experiencing the frequency problem. Yesterday i went 27 times in one day. I am sorry this is so long. I am just looking for answers. This is such a horribly painful disorder. How do you deal with so much fatigue, pain and frequency on a daily basis?? What should I ask my dr for in terms of help and what should i expect when i get home from the biopsy? Thanks in advance for the support. Kristie

[SheriG]

Hi Kristie, and welcome to the IC boards. Sorry to hear of your ordeal...many of us here have dealt with similar situations prior to being diagnosed. You are right, IC is a nasty disease, but you do get used to it. Mine has been at a barely tolerable level since being diagnosed (about 2and a half years ago) I am on substantial pain meds, but I have finally gotten over the guilt associted with taking them. They help me to lead a somewhat normal life.I was also diagnosed with biopsy, during a hydrodistention. I wish you the very best as you begin your life with IC. This board is very helpful, as are the people who post here. They are all very warm and caring, and always willing to lend support. Please post often and let us know how you are doing. All the best! grouphug hi

[Iris]

hi Kristie, and welcome, Sheri is right, we have all had similar situations prior to being diagnosed with IC. You will find great support, information, and make lots of new friends, who deal with IC and know how you are feeling. Please keep us informed of how you are doing, and any help, support needed, we are all here for you. Take care and keep us posted, hugs Iris. hi grouphug

[Katrina]

WELCOME TO THE BOARDS!!!!!!!!

I hope you find relief from your pain. I want you to know that there are some people that do get a lot better with treatment of IC so have hope.

[ICNDonna]

I'm glad you found the IC Network. You'll find a lot of information and support here. The Patient Handbook at http://www.ic-network.com./handbook/ has a lot of information on treatment options, as well as diet information.

I think it's good that you will be having the testing needed to confirm, or rule out, IC. Once you know exactly what it is you are dealing with, it does get easier.

My IC was diagnosed in 1975 --- and if there's any one thing I like to share with those who are new to IC, it's that there is life with IC. It may take time to find which treatment options work best and which foods and drinks are triggers, but most of us do get there.

I am able to live a normal life in spite of having IC.

Warm healing thoughts,
Donna

[khouse]

Welcome to the icnetwork, I can totally relate to your situation, I went thru basically the same thing, only I did have kidney stones which just basically complicated the diagnosis. Hang in there, post often and ask lots of questions, I would not have survived without this support group!

[mayray518]

The seventh doc I went to did a hydro and took a biopsy. It was a little painful after the surgery but nothing compared to the pain I had with the IC. The biopsy showed that my bladder was inflamed in all the layers. He also took a picture of my bladder which showed hemorrhaging in all quadrants. I thought this was important as it "proved" that I was walking around with a major organ in my body totally inflamed. The biopsy can also show mast cell activity which may be crucial in determining IC.

[lotsofgirls]

Hi Kristie,

Sorry to hear you are in so much pain right now. Things that might help are going on the IC diet right away to stop aggravating your bladder, using a heating pad and hot baths to relax the spasms, and getting off your feet and resting as much as you can. If you can take prelief with your food as well that should make a difference. Once you have the biopsy (? Most of us have hydros for dx) then the docs will start to treat the condition and you can start to heal. I take ditropan xl 20 mg at bedtime and it shuts the frequency down. I have pain all the time but I am doing bladder instillations right now and hoping that will settle the pain down.

I hope you start to feel better soon. And don't be hard on yourself right now, its ok to be tired and rest all the time. Your energy will come back when you start to get treatment, and in the meantime the best thing you can do is let yourself rest rest rest.

Sending hugs,
Cath

[kristiemp]

I just wanted to say thanks for everyones kind words of support. It really helps to know there are people out there who totally understand what I am going through. What did we do before the world wide web??? I will keep you updated hopefully my biopsy will let me know what is going on...

[Iris]

I agree Kristie, what did we do before the world wide web, it is such a helpful tool in a lot of situations. Do let us know how you are doing, and take care, hugs Iris. hi grouphug

[Alexa]

Hi kristiemp,

Welcome to the ICN! I just wanted to clarify that a biopsy doesn't diagnose IC (the cystoscopy and hydrodialation are used as diagnostic tools) -- the biopsy rules out other possible reasons for your symptoms.

I'm sorry you're having such a hard time right now. I would definitely take a look through the ICN Patient Handbook -- it has a ton of great information, and really helped me when I was first diagnosed. Please know that you will feel better, it's a matter of finding the treatment that works for you. I am not the same person I was 7 years ago when I was first diagnosed, I'm doing so much better!! You will too. Hang in there, we're here for you.

Warm hugs,
Alexa