Diagnosed a week ago

[Lullaby]

Hi everyone,
First, I'd like to say how glad I am I came across this site. It does help to know I am not alone.
I started having lower back pain and what I thought was right side ovarian pain in September of 2007. I also noticed at that time that I had to urinate what seemed like constantly. I had a laparoscopic procedure on February 4th-my doctor thought I had scar tissue from a partial hysterectomy that was causing the pain. I asked her to 'take a peek' at my bladder while she was there, and lo and behold, I have IC-the ovary is fine. I don't know that I've ever had a bladder spasm or a lot of the other symptoms I see here, though I do occasionally feel the stabby pains in my bladder ( I think it's my bladder). I haven't discussed any of the treatment options with my doctor yet-my next appointment is in a week-though she did prescribe Elmiron. I am absolutely not taking that pill-I deal with the public and can't imagine losing my hair, let alone the bloody stools and diarrhea. So my question is this-is this going to get progressively worse? And what if I don't want any of the treatments? I am going to ask about the antihistamines, but a lot of the medications I see here I can't tolerate. My pain isn't completely debilitating, but I'm afraid it might someday. I'm a little scared, and a little angry. I have already started changing my diet. I just wonder if that on its own will be enough.
Thanks for letting me vent,
Lullaby

[dancemomof2]

:welcome: to the ICN

[Lullaby]

Thank you Leslie!

[SharonA]

Hello Lullaby...I am so glad you found us. :)

It is so normal to feel the way you do right now. Getting a diagnosis of IC is not pleasant news. I want to tell you that it is not necessarily a progressive disease. I believe that it has been progressive in only a very small percentage of patients. I feel so much better now than I did in the beginning.

One of the things you need to understand is that most people who come here and post are doing so because they are having problems. They come here for support, understanding, suggestions, friendship with people who do understand without question and they come here for hope. That is why we are here.

I, for one, come here because I do feel good most of the time and want others to know that it is possible for them, also. I come here because I want to support people like you who are in the beginning stages of learning what IC is all about.

We are all different. We have different symptoms. We react differently to different meds/treatments. Just because someone had side effects from a med/treatment does not mean that you will, also. Just because I react one way does not necessarily mean that you will. Just because I am helped by taking a med or having a treatment does not mean that it will be the same for you.

You mentioned that you had been given a prescription for Elmiron and that you would not take it because of the side effects that are listed for that med or because you read a post about someone losing hair. That does not mean that you will have the same side effects. There are so many people who have been helped by taking this med. Once again, we are all different.

Of course, whether you take a med or not is totally up to you. But I wanted you to understand that we all don't react to meds the same way. Please don't let any of the posts here scare you.

I hope you start feeling better very soon. And please remember this...There is help and there is hope... :)

[Lullaby]

Thank you very much Sharon. I'm actually in a lot of pain today today and am rethinking my whole no pill theory...I'm just confused. Do you mind if I ask what medications you take?

[mary124]

Wanted to welcome you:welcome:
Just letting you know that I take Elmiron--been taking it for over 10 years; never had any side effects from it; but like SharonA said we are all different in how we react to things.

[Lullaby]

Thank you Mary! I was under the impression that Elmiron repaired the bladder wall-but you've been on it for ten years? Is that for symptom relief? Forgive my ignorance. I'm reading and trying to learn as much as I can right now. If you stop taking it, does the damage return?

[Claredale]

Lullaby, Elmiron didn't help me, but other meds did. Reading all the side effects can be very overwhelming as Sharon shared with you. I have dealt with IC for many years and have had my ups and downs, but I have a doctor that I trust and specializes in IC and all the symptoms that go with it and a wonderful support system, including this site. We will be glad to offer any help we can.

Have you looked at the IC diet? It had made a big difference in my symptoms. I used the elimination diet and found that there are many foods that I can handle eating. IC is very different for each and everyone of use, but there is usually someone that can give you advice while dealing with IC.

Hugs, Tracey

[sandramac]

Lullaby
Welcome to the ICN , sorry you have IC but glad you found us. The people here have been my godsend. We are all here together. My best advise is to start a journal on your cycle days and pain levels. I myself find my own IC very hormone related to my Cycle. Periods and ovulation. Stress and diet also. My best friend is my heating pad. We are all diffrent and try diffrent meds and have diffrent results .You need to find out what will work for you. That you have to discuss with your doctor and do reaserch . I also find it helpfull to ask other's here what they have found helpfull for them. I myself do take Elimiron, Hydroxyzine Topomax, And Tramacet for bereakthrought pain! Also a daily anti inflamtory. I have had 3 hydro's tried installs ,DMSO . Did a Cystaitat trial . but again we are all so diffrent but need to find our own mix that works for us.You are never alone here ! Remember that! IC will not break me .I manage to work full time a Mastercolorist & Stylist & manage a Salon , I love my job !
I do have bad day's but make the best of the good one's.
Hugs Sandra :cat::cat::cat:

[Lullaby]

Thank you all so very much for your support. It really does help to know I'm not alone!
It seems that trial and error is the best way to find the meds that will work the best. Unfortunately I have tried many of the medications I have heard mentioned here for various other conditions, and could not tolerate them-but at least I have that knowledge!
I'm also going to try to copy your attitudes-I need to get off the "Why me, I have to take meds for life now, blah blah blah" kick that I seem to be on right now.
Thank you again, so much.:)

[SharonA]

Lullaby...I don't mind you asking, at all. I have been taking Elavil (Amitriptyline) since December 2001. I take 25mg in the early evening. It is my main IC med. I do use Prelief, also.

I also learned what my trigger foods/drinks are from the IC Diet. Your diet can play a very important role in your symptoms. Check out the Diet. There is a link at the top of the page that will take you to it. Many here have found it to be a tremendous help with their symptoms.