Very Scared

[serendipity]

After 8-9 months of pain, doctors, tests, different meds....I've been empathetically diagnosed with IC and started just this week on Elimron 2 capsules twice a day and given TRAMADOL to take as needed. Part of me is relieved to get a diganosis. Part of me is devasted at the realization of knowing I really do have IC. I am SOOOOOO afraid of getting worse. I am soooo afraid of sinking into a depression because I feel "altered and broken". I am sooooo afraid of the meds not working and their side effects. I am sooo afraid of living in pain forever and never knowing what I may eat or drink or what activity I may do that may cause me pain. I have been on and off these boards since my symptoms started trying to get information and advice and hope. I am very upset and angry that this happened to me. My boyfriend says it doeesn't matter to him but he doesn't get that it MATTERS TO ME. I hate that I get go out for drinks or coffee with our friends. I hate that I have to be very picky whenever we go out to eat or he tries to cook me something. I hate that I can't be spontaneous with him in an intimate way. It all just upsets me. If I thought, if I knew for a fact that this was all only temporary and I would indeed one day be "NORMAL" again maybe I could be more optimistic. But I hear and read "chronic" and "forever" and I cry at the thought that THIS IS HOW I WILL BE FOR THE REST OF MY LIFE AND I AM NOT EVEN 40 YET!

[littlemyrn]

Sorry to hear about your diagnosis. Many go into what we call remission for years at a time. I myself was symptom free for about 3 months, but I have other issues that sometimes will flare me. Stress is a big no no, so try to reduce the stress, I know its hard. I have gone through a divorce in the middle of this and it killed me because of the stress.

I always say have a pitty party and then try to go on as much as you can. Who knows the Elimiron may work for you. I also hope you have a good URO.

[serendipity]

I always say have a pitty party and then try to go on as much as you can. Who knows the Elimiron may work for you. I also hope you have a good URO.


I am seeing Dr. Kaufman in New York who is an IC specialist and who has done lectures on this site and others. He PROMISES me he will make me better. But when he says "better" I fear that all that means is maybe a LITTLE LESS DISCOMFORT AND PAIN but never, ever will I be discomfort or pain free.

[jen74]

I am only 33, so your not alone. My symptoms started when I was about 30. I understand your frustration. Remember, not everyone gets worse, and some do get better, and some stay the same, and some flucuate. I have severe pain with my IC. I have a very high tolerance for pain, but this pain I cannot tolerate very well at all, so I do understand.
Also, when you read "chronic, or "forever", you cannot go by that. First of all, Nobody knows what IC even is. There is no doctor out there who knows what IC is or what causes it, so they cannot say you will have it forever, unless they are GOD, which they are not!
I am very pestimistic when it comes to this disease because I also feel like I will never lick this, and I cry ALOT. I cry from the pain, I cry because I feel helpless, and you're right, it sucks when you can no longer be that spontaneous person you use to be. But try to hold your head up. My dad keeps telling me that they are constantly doing research and they will hopefully come up with something one day. Sending hugs your way.
Jen

[SharonA]

It is so normal to be angry, depressed, full of grief, afraid, wanting to run away from yourself, wanting to ignore what is happening, wanting to hide, wanting anything other than where you find yourself right now. So allow yourself to feel all these things but never, never, never give up on yourself.

There is every hope that you will be one who is able to find what helps and then be able to live the life you want to live. It sounds like you have a doctor who will do everything he can to get you to that place. That is such a huge accomplishment. Work with him and work with yourself. Do the things necessary right now to get you to where you want to be. Yes, it can take time but you can get there. It is possible. (((Hugs)))

[gsmith]

I have to go back to work on Monday after 6 treatments of Rimso and I don't know if I'm going to to be able to do it. I also think I need to be a second opinion on my case. My doctor is not very sensitive and caring about this disease and after 6 months he still calls me Gloria.

God Bless
Glenda

[lisabar36]

Hi, I am so sorry you feel that way. I do remember those feelings and it is scary. I can tell you, it does get better. There are so many treatments for IC. It can be frustrating in the beginning until you find the right combo of meds that work best for you. Sometimes its trial and error until you do and it can get overwhelming. It sounds like you have a good doc and thats great. I notice you have some pain with intimicy, I see a physical therapist for that, she specializes in IC and sexual pain and pelvic pain, and there is hope. I have came a long way with that, so with the right treatment, you will start to feel better. My doctor added meds slowly so that way if I had a side effect, I would know what med was causing it. I always started at the lowest dose to. You can see the meds I take below and I have not had any weight issues at all. I know we are all different though. I have not gained one pound from my meds. Its just something you can keep an eye on and always let your doctor know your concerns. Hang in there.

[psj]

I know exactly how you feel!! It is very scary and frustrating. I am 22 years old and was diagnosed with IC 3 weeks ago.

Just two days ago, I probably had my lowest "IC-day". I had to attend lectures at the university and a meeting for work, but had really bad frequency and urgency. I felt horrible. But that was two days ago... yesterday was a little better, and today is not too bad :-)

I honestly don't know much about IC as I am very new to it all. But maybe some of the thoughts I have gone through the last two days will help you:

I think accepting that I have IC is going to be a big help. I think it will help me feel less anxious and stressed about it all (which in turn hopefully decreases my frequency and urgency).

Next, I am planning on watching my diet strictly the next few weeks to figure out what my trigger foods are. Once I know, I can probably relax my diet a little and start eating the things that don't seem to be trigger frequency.

Also, I am slowly beginning to tell people that I have IC (professors, my boss, friends). I try to just give them the facts without being too emotional. So far, I have found everybody very supportive and understanding. Of course it is not a lot of fun to tell the whole world that I have badder problems, but I find that it helps me feel less anxious.

What else? Well, I have decided to try counseling too. I hope that together with the counselor, I can find some coping strategies that will work for me.

I am feeling a lot more confident that I can manage my IC now. This discussion forum has been a HUGE help for me the last two days. It is okay to feel low, but don't give up!

I hope you feel better soon.