diagnosed this morning and need advice(and sympathy)

[leonielane]

Well after just six weeks of symptoms i had the cysto/hydro this morning and was told what i knew already. Ive had six weeks to grieve for my old life of coffee, chocolate and margaritas, so i suppose im not too shocked. But i have questions. My urologist broke it too me like this "well you have IC, I wouldnt wish that on my worst enemy" but then said "ah well sometimes it just fades away". Is this true or did he mean the typical periods of remission?
Also, I have only started to have mild bladder pain in the last week, at just six weeks of symptoms is it pretty much a definite that this will worsen? The last couple of weeks ive been keeping pretty much to the diet and if that was IC I can live with it, I am just terrified of deterioration. I read that over half ICers cant work...this terriifies me, big mortgage.
To crown my worries I hear we dont even have Elmiron here in Ireland so dont know what he'll put me on. I have to see him in six weeks to discuss treatment, seems a long while. Jeez!
And right now Id like nothing more than a big comforting glass of red wine but i guess i can kiss that bye bye! Sorry about the self pity, I only had the procedure a few hours ago so im still peeing glass, UGH.
Suppose id better choose an emoticon now im in the club..

[bubbe1]

new

Well after just six weeks of symptoms i had the cysto/hydro this morning and was told what i knew already. Ive had six weeks to grieve for my old life of coffee, chocolate and margaritas, so i suppose im not too shocked. But i have questions. My urologist broke it too me like this "well you have IC, I wouldnt wish that on my worst enemy" but then said "ah well sometimes it just fades away". Is this true or did he mean the typical periods of remission?
Also, I have only started to have mild bladder pain in the last week, at just six weeks of symptoms is it pretty much a definite that this will worsen? The last couple of weeks ive been keeping pretty much to the diet and if that was IC I can live with it, I am just terrified of deterioration. I read that over half ICers cant work...this terriifies me, big mortgage.
To crown my worries I hear we dont even have Elmiron here in Ireland so dont know what he'll put me on. I have to see him in six weeks to discuss treatment, seems a long while. Jeez!
And right now Id like nothing more than a big comforting glass of red wine but i guess i can kiss that bye bye! Sorry about the self pity, I only had the procedure a few hours ago so im still peeing glass, UGH.
Suppose id better choose an emoticon now im in the club..

Hi,

Well, first, IC can be a challenge, but it isn't always as bad as your doctor made it sound. Everyone experiences it differently.

If you aren't doing too badly right now, then it could be you'll stay that way. It doesn't always get worse, that is not a given at all, and yes there can be remission.

There are lots of treatments for IC. You can explore them here on this forum, so if you can't get Elmiron, there are other things that you and your doctor can try.

Keeping up with the diet really helps. If you're just starting, my suggestion is to be really careful for a while and try to find your trigger foods,(foods that cause flares for you). It's helpful to keep a food journal. Write down what you eat, and how you feel afterwards. Start with the safe column of foods, and then one at a time, add in new foods and see how you do. For me, the diet was one of the best treatments for my IC. I know it's hard and can be frustrating, but you'll get used to it with time, and find many things you can enjoy.

If you can tolerate it, a cup of herbal tea, (no caffeine), can be very soothing. Sometimes I just drink hot water with honey and a bit of milk. Tastes good and I find it comforting.

Try not to be too stressed. Take this one step at a time, and keep writing to us. BTW, venting here is always welcome.

Hugs,
Laurie

[leonielane]

thanks so much Laurie for your helpful (and prompt) reply I think it is shocking how little we seem to be told by a lot of urologosts, going on my own experience and stuff i've read here, so this forum is so important. My own doctor was quite dismissive this morning when i asked questions, there was more than a hint of 'get over it you silly girl'! arrgh!
I will give the herbal tea a try, good God i miss my latte's already! If the forbidden things have no effect when eaten/drank does that mean they are okay or may they still be doing damage does anyone know?
I have begun to think of my bladder as a scared little wounded rabbit, and i dont want to poke a stick at it and scare it.
Off to pee more glass now, yippee.

[Linda May]

Ic

I had the D.M.S.O treatments and so far I am in remission. I hope and pray I never go through that again and I hope you find a quick treatment plan. Did your Uro tell you if you had mild, moderate or severe IC?
If its mild the diet might work alone, every icer is different and in time you and your Uro will find the correct treatment plan. I wish the best for you and you came to the right place for support.

[ICNDonna]

I'm sorry that you have IC, but if there is one thing I can share with you, it is that most people with IC do find effective treatments and most of us feel good most of the time. My IC was diagnosed in 1975 --- at that time not much, if any, thought had been given to a diet connection. I found my diet triggers on my own and the food list on this site (the link is in my signature below) confirms that my problem foods are all listed on the caution list with one or two exceptions.

You mentioned that you are keeping "pretty much" to the diet --- my only suggestion is to change that to keeping "100%" to the diet --- for at least six to eight weeks.

I hope you recover quickly from your hydrodistention and that it helps with your symptoms.

Warm hugs,
Donna

[Toto]

Welcome. I'm sorry you are suffering so much. I keep to the diet but not entirely. But I'll be honest, when I get weak and drink a soda or eat tomatoes, I suffer a lot and for days. Nowadays I avoid those things because it just makes matters worsse. At the very least, try to give up soda, caffeine, and tomato products. Also for me, yogurt is terrible, as well as most teas, except for Camomile. (which I'm forcing myself to like) So like Donna said, perhaps you could do the diet strictly for a while or at least until you can find your triggers.

My PCP told me IC is a horrible disease. He didn't mean any harm but was basically saying that it is a very difficult thing to have. But from this site I can see that there is a light at the end of the tunnel in many cases. Even in my case, I feel that I will someday be better. I recommend reading different posts hear about treatments and what's worked for people. That did help me a lot.

And post any time!!!! HUGS!

[Pammylynn8]

Hi there.. I just got diagnosed as well.
I don't know much about it fading away but I am imagine that people go into remission for long or short periods of time.
As Donna said following the diet 100% is really important. That helped my pain go from a 7 to 2-3 and the frequency is less (except at night). I did find that I can have some no-no foods. After you eliminate all of the bad you can try to add some of the bad in and see if it affects you. I know it is soooo hard to elimiate food. Blech, I miss chocolate cake, but I can eat choc. chip cookies instead.
Good luck!

[leonielane]

thanks so much for all your replies, they mean a lot on day 1! My urologist didnt specify mild/moderate/severe, he just said "there's glomerations(sp?) and there was a fair bit of blood. i cant see how it would be anything but mild given that i am only suffering for 6 weeks and none of this time has been agonising, so here's hoping, any thoughts?!
Thank you also for your diet advice. I know im going to sound like a bit of an alco (living up to being Irish) but my biggest fear is having to give up the nice glass of wine of an evening. But maybe that won't be permanent, and if anyone has discovered the drink that does not hurt, feel free to share this information!
i have ordered prelief from amazon since it's not sold here. Im going to have to go to the States with an empty suitcase, the meds available over there sound SO much better!

[heybrej]

I am so sorry to hear about your diagnosis. I just wanted to pipe up and add that I was diagnosed 6 years ago and had symptoms for about a year and a half before I went into a full remission for almost 5 years. I was literally symptom free - a normal life. I was even off of the IC diet. Just recently I believe I have come out of remission, but as bad as it is to have IC at all, it's not as bad as it was last time. I'm still struggling (mostly emotionally) but I did want to chime in and tell you that it is possible to go into remission for long periods of time.

[NancyB]

Progression of IC, Etc.

Just wanted to say hi and to let you know that you are not alone and that there is a wealth of information on this site and lots of people to help you.

I want you to know a couple of important things. First, only 10% of ICers progress/deteriorate from where they were when they were diagnosed. Second, I have not heard the statistic that 50% of ICers cannot work. You are an individual and your case will be unique to you. If you can, try not to focus on discouraging stats. They will just make you feel bad.

You have been given a lot of good advice. The diet is something you should definitely try. You may not be diet sensitive, but it will be good to find out. It is also important to find out what bothers your bladder. You may not have problems with all the things on the list. Or, you may have problems now, but after your bladder settles down, you may be able to eat some of the usual problem foods. It is just trial and error unfortunately. I don't know if they have bottled spring water where you live, but if you do, drink that. Just make sure it has no additives, etc. in it.

As far as your doctor's appointment in 6 weeks goes, I would call the office and see if you can be seen sooner. No use stressing out about that. Stress just makes things worse. Until you have your appointment, read up on all the IC treatments and medications on this site so that you can have a meaningful conversation with your doctor.

Hope this information is helpful to you.

NancyB

[leonielane]

thanks so much for all your kind words and thoughts. heybrej i hope your remission returns very soon and lasts as long, it must be so disappointing to come out of it. Nancy, i saw that stat on wikipedia, so i should be more sceptical about it. We do have bottled spring water though I think i may have drank the country dry of it today!
anyway, i hope i can give encouraging words to some of you someday soon, this really does feel like joining a club. Maybe it'll be fun....oh okay that's stretching it!

[Little Sunshine]

I'm sorry you have to be here....but I do hope you find some of the answers that you seek. I was told that I have a mild case of IC. So far (not to jinx it) I have been able to control my symptoms with diet and a supplement called Cystoprotek. I follow the IC diet to a T. I don't go out to eat and I carefully monitor everything that goes into my food that I make at home. I allow myself 1 chocolate cookie/week. It doesn't seem to bother me. The only other thing I have experimented with is beer. I have missed it! I only allow myself 1 every 2-3 weeks. I haven't noticed that it bothers me at all. If anything, it actually helps relax me. With that being said, not everyone can handle it and I don't suggest you dive right in. You need to give your bladder time to heal, which can happen by following the diet very strictly. As far as people with IC not being able to work....I don't think that speaks for all of us. Some of us are too sick to work, but I think some people may use IC as their scapegoat to get unemployment b/c they don't want to work. I spent four months in bed when I first got sick....now that I'm feeling better, there is no stopping me. I ran a 5k a few months ago, went whitewater rafting a few weekends back and went back to work about 2 months ago. One thing I've learned, don't get hung up on statistics b/c each case is so VERY different. Instead, focus on treatment options and work on new recipes to include in your IC diet. Best of luck to you!

[earthlady]

I had to give up my wine but now I can have a good quality vodka martini once in a while and it doesn't bother me at all. I was so upset in the beginning about giving up coffee and tea and wine but now I don't even miss them. I have never been as bad as when I was first diagnosed and am currently in remission so it doesn't always get worse and sometimes will get a lot better. You may be able to obtain the Elmiron from Canada, or the generic from India if you decide to pursue it. I didn't take Elmiron and went another route with supplements, some meds, and diet and I've been symptom free for a good while now.

[AJ2011]

Hi there, I got my first IC symptoms 2 years ago. You know how long it takes to see a specialist in Ireland/UK, so I took matters into my own hands (at which point I was driven mad by pain, frequency etc.) After a few months I got it under control through diet. I also kept a diary which was very useful to brandish at the Gyno when I eventually got through the door.
After about 4-5 months watching my diet, the symptoms receded enough for me to be able to eat and drink what I wanted, except I gave up caffeine which really helped, so don't say goodbye to your wine forever, just wave it off on a little holiday and perhaps replace it with herbal tea for a while:give the diet a chance to help your body heal. I think the most important thing is to be proactive in what you think will help you as a treatment. Don't give in to fear (which is so incredibly difficult, I know). When you feel like this it feels like it will last forever, and when doctors scratch their heads it's so frustrating.Discuss in depth with the doctor how you would like to proceed. Also I asked my Gyno if I could stay on their list to come straight back into the office if I had a flare-up in future instead of having to be referred via my GP, and had maintenance visits even when in remission. I'm very glad I did that now, as I'm in a flare.
Stress, anxiety and fear are the absolute worst things for your health so try to remember that this is not forever, have faith that you will be well.There are loads of things to try out there, one or some of them are going to help. Sending you healing thoughts.

[leonielane]

Thanks so much for kind replies. AJ2011, your reply is very encouraging. Youre right, I have to take charge. I have started doing so by going for my first acupuncture sessions this week and also going to physio (he says my back is kaput along with everything else!). The acupuncture hasn't worked yet after two sessions but i live in hope. The acupuncturist was the first doctor I have attended (besides the urologist) who actually knew what IC is and understood my symptoms, so even that was a relief. I find my symptoms now are mainly feeling like im about to start my period, ALL the time. I dont get much bladder pain, just the odd shoot. Teaching can be a lousy job when youre like this - there's nowhere to hide! Anyway, I hope you are all feeling well and thanks again.