Newly diagnosed

[Dojakitty]

I have just been diagnosed in the past year and I feel I am already getting worse. I am hoping for a cure or for better treatments soon. I have been on elmiron since december along with elival. I was given samples of Urelle and that seems to get temporarily comfort along with vicodin. I have come to accept this as something I will be living with the rest of my life. I have gone through a lot of depressing weeks just thinking about how much pain I am in. My boyfriend who I live with has been so supportive. I have a lot of pain in my urethra and I feel like my bladder is cramping a lot.

I have been told to join a support group and have been reading many people stories. It made me decide to join and talk about this disease with others. It is hard to live with when no one knows even what it is. I have to think about long meetings that I will be in or going places that will be difficult to use the bathroom.

I am looking for ideas of relief from other people. If you can give me suggestions I would really appreciate it. I have heard of Gota Kula and Prerelief. Does that work for anyone?

I

[hollipop]

Hello! Glad to meet you, but wish the circumstances were better.

I would like to try the gota kula, too! Prelief just gives me tummy discomforts, so I don't use it much.

[Motherof2]

I am on Neurontin, Elmiron (1 month), Elavil, and an antihistamine. I also take Calcium Citrate when I eat. The Calcium and the Neurontin have made the biggest difference. The Elmiron takes 3-6 months. I have also recently started the IC diet. I was only diagnosed last month. I hope this helps. By the way, I am also going through the depression part of it. Rhonda

[Sarojini]

I bet you've already done this, but if not, check out our Patient Handbook -- the link is at the top of the page right under the ICN Forum logo. :) Inside that document you'll find lots of advice and help, including a very comprehensive list of current treatments for IC. If you'd like to know what I take, it's down below in the signature...

I really feel your pain about long meetings!!! I work as a postdoctoral research associated in a biology lab, and we have lots of meetings... some of which I have to lead and/or present at! For a long time I tried to suffer through things and then finally decided it wasn't worth it anymore. I started by just getting a seat close to the door, and getting up quietly to dash to the restroom if necessary. Then I'd come back in and sit down. Basically, it's usually okay as long as you do not create a large amount of noise/distraction while getting up and coming back in.

At my current job, my immediate supervisor and some of the doctors I work with know about my condition (I told them, but they would have found out anyway since our local paper did an article on IC and used me as an example patient)... it hasn't happened yet, but even if I happened to be the speaker at the time and I had to go RIGHT THEN, I'd probably take the mike off and tell them to discuss among themselves for a while while I took a short break. Since my boss and colleagues know what's wrong (and in fact, another woman in the lab has IC as well) I think they'd know exactly what happened.

I don't know if you have this kind of freedom at work though -- or perhaps you just don't want to bring up the IC, and that's okay too! :) :grouphug: But don't suffer -- sneak out of a meeting if you have to. It will go on without you and you'll be back before you know it.

As for G.K., I haven't tried it as I'm not much of a herbal user; I have tried Prelief and find it does help with lots of foods and allows me to eat many types of fruit again (although I still cannot do oranges, lemons, limes, etc).

[ICNDonna]

I'm very glad you found us.

You didn't mention whether you are following an IC diet so I will make that suggestion because many people with IC find that single step helps more than any other single thing.

Elmiron can take up to six months or longer to become effective so don't give up on it yet.

Sending healing thoughts,
Donna

[Dojakitty]

Hello! Glad to meet you, but wish the circumstances were better.

I would like to try the gota kula, too! Prelief just gives me tummy discomforts, so I don't use it much.

What is the probiotci immune system? Is that for upset bowels?

[traceann]

Hello and welcome to the gang!! :)

I too was wondering if you are following the IC Diet, it can be a tremendous help while waiting for meds to kick in - cause yep, Elmiron is sloooooooooooow going, but for me it was very worth it!!!

How about a heating pad? I think most of us have one and they are our best friends, lol. I also have the heat patches like ThermaCare for when I need to be wireless. Um, there's also baking soda or Tums when you have eaten something that he bladder is not liking, I take 1 tsp of baking soda in water (a big glass, yuck, lol) or when not at home I carry Tums with me. And when all else is failing, I fall back on my pyridium, or OTC pyridium (AZO Standare, Uristat). That usually will calm things down when all my other methods just aren't working. But if you're not aware, it makes your urine orange and can stain underclothes.

Hope this helps you out a little bit and once again, WELCOME!!

Hugs!

[icnmgrjill]

You might consider buying our ICN Special Report on Managing IC Flares which will go over the most common causes for IC flares and then provide many suggestions on how to manage them.

Now in the ICN Shop! http://www.icnshop.com
under ICN Print Materials

Jill :)

[emilyrose197377]

:welcome: to the ICN.

[mom2kk2006]

I am new too and newly diagnosed, I am also in a state of depression. This site has been so incredibly wonderful and bringing up my spirits. My problem isn't the pain so much but hugely the frequency.

Good luck.

[Dojakitty]

Hey I have bought the OTC pyridian... is this something you should only take once in a while or what?

Hello and welcome to the gang!! :)

I too was wondering if you are following the IC Diet, it can be a tremendous help while waiting for meds to kick in - cause yep, Elmiron is sloooooooooooow going, but for me it was very worth it!!!

How about a heating pad? I think most of us have one and they are our best friends, lol. I also have the heat patches like ThermaCare for when I need to be wireless. Um, there's also baking soda or Tums when you have eaten something that he bladder is not liking, I take 1 tsp of baking soda in water (a big glass, yuck, lol) or when not at home I carry Tums with me. And when all else is failing, I fall back on my pyridium, or OTC pyridium (AZO Standare, Uristat). That usually will calm things down when all my other methods just aren't working. But if you're not aware, it makes your urine orange and can stain underclothes.

Hope this helps you out a little bit and once again, WELCOME!!

Hugs!

[traceann]

It's not for long term use, I think it says on the bottle not to take more than 2 days, I guess it can build up in your kidneys(?), :) lol, don't quote me on that...but I know it can build up somewhere, :hmm: lol. I talked to my doctor about using it, )in the beginning when I was first diagnosed and in the "Big Flare", lol), because I was using it to get through the day, and he advised me on how long I could "safely" take it. So, you might want to call your doc, tell them what you have and see what they recommend to you. I know before, the doctor has given my Rx's for pyridium and I was able to take it for more than the 2 days that's posted on the OTC stuff. But it really can help immensely, it was my last trick to use when all the other things weren't working!! ;)