Newly diagnosed and afraid

[PamIvanicki]

Hello everyone. I was diagnosed 2 weeks ago with IC. It seems to have come on after a bladder infection. I had a series of bladder infections that always resolved with antibiotics and also had several bouts of non-specific vaginitis over the past year or so - all caused by the same bacteria, I guess. Just over 1 month ago, the bladder pressure started and has not subsided. No pain, just pressure. Cystoscopy came back normal, urinalysis and urine cytology normal and CT Scan normal. Doctor made a tentative diagnosis of IC, but I'm going to request more testing - hydrodystension with random biopsies just to be sure he's not missing something more severe.

Well - that's my story so far. I'm afraid mostly of things becoming progressively worse as time passes. Does anyone else find that their symptoms have become worse, even if they follow the IC diet and are on medications? That is my worst fear, as if things stay as they are now, this seems like I can manage it.

Thank you for listening.

[Dixiefireball]

Most of the time I.C doesn't get wrose. yes we do have flares that can cause more pain sometimes get u.t.i which causes more pain even a womens mthly sometimes causes flares :(

have you checked out the handbook? its a great place to start since you just was dx. you can find it at www.ic-network.com/handbook this has the i.c diet in it you was talking about plus a lot more helpful information like treatment plans. what a bladder i.c bladder looks like test that are done etc.

b.t.w :welcome: to the ICN family we are glad you found us. Please know we are here for you and most important we understand and care!! Sending you hugs and prayers
Rhonda

[Katrina]

I have had a problem with medications only helping me so long....but there are a lot of treatments out there....and by continueing to try new things I am a lot better than I was when first diagnosed.
During the months before elmiron worked for me I did continuelly get worse. If I were to live those months again I would definatly seek more treatment than just elmiron...so I didn't have those terrible months of severe pain.

Regardless of that...I did get a lot better. For most people IC improves with treatment. Sometimes it takes time...don't give up!

[PamIvanicki]

Thank you Katrina and Dixie for welcoming me. I just hope I'm like "most" and respond to treatment. I just started taking Elmiron and Hydroxyzine with VesiCare and feel pretty good, with just pressure at times. Maybe mine is not a very severe case. I hope! :)

[liznazz]

I felt just like you did exactly a year ago. I started elmiron, atarax, and celebrex last April plus following the IC diet carefully. I am able to say that the combination of the medicine ( I also take .5 klonopin at night to sleep), plus some natural remedies I had researched (such as cornsilk) have helped me tremendously. I still have occasional flare ups, but I started seeing a difference around Novemeber (the 8th month mark with elmiron). I know I was just as anxious as you are now feeling that I would never be able to live with the pressure and uncomfortableness. I have more better days than bad ones, but it took almost a full year to get there. Hang in there and you will find great support and help on this site. liz

[PamIvanicki]

Liz - Have you tried Aloe Vera or CystaQ? I have been taking, but don't know if they are helping or not. What about CystoProtek? I just ordered the free 5-day sample. Ristoril helps me sleep at night, but I worry about getting addicted to it, but I did not take one last night and tossed and turned all night.

[liznazz]

I have not tried aloe vera or cystaq, because I've had decent success with what I am on, but I was thinking of adding the aloe vera to my regimen. Another thing that I use is MSM in capsule form. I take about 4-6 tablets a day. This also takes a month or 2 to kick in. As I said, I am considering taking the Aloe Vera, but am holding off for the moment. liz

[PamIvanicki]

What is MSM?

[Betsie]

Pam,

I am exhausted right now and not in a good posting energy..but mine came on exactly as you are saying...well a UTI? and non responsive to antibiotics....well thats actually an unsure statement....listen I will write you I promise...but please don't be afraid...I know that right now it feels like the end of the world, but you and I are the lucky ones...we were dxd early, which for many here is not the case....hang in, get on elmiron, expect to be very patient...but don't assume it will get worse-I am about as close to being great as possible, still on the Elmiron and pain meds, but leading a full life after a very stressful year with my IC behaving etremely well....so hang in there and I will PM you soon.....just ready to snooze or post easy ones. :) keep your chin up...stay positive and dont read more into the disease than is actualy an issue for you....find your way around the boards and get a copy od Dr Moldwins book-look in the ICN shop.....okay hitting the wall. LOL....good luck. typos dont count when you are tired :biglaugh: :biglaugh: & a big :welcome:

[PamIvanicki]

Thank you. I look forward to chatting with you more.

[melanie626]

welcome. It took me forever to get diagnosed, but I felt better when on the right meds...I am in an ugly flare and really working the diet, but I have had some GREAT days sprinkled in there, so I am totally optomistic...hang in there. This is a great place for support.

[PamIvanicki]

Thank you Melanie. I hope your "GREAT" days soon outnumber your not so great ones.

Question: Does anyone find that sedatives such as xanax or valium helps? When I first started having symptoms, my doctor put me on Elavil, I went into TOTAL anxiety state. I stopped the Elavil and took a Valium and was amazed at how much better I felt. Even though my urologist said it does not work on the bladder. I now take an occasional Xanax and a Ristoril to sleep and feel miles better. Have you or anyone else had similar experiences?

I feel that the fear is more crippling than the disease? Anyone else?

[liznazz]

From liz:
MSM is a sulfur compound related to DMSO, but taken orally. To read up more about it, go to google and type in MSM--you will come up with a lot of information.

[Sarojini]

Hi Pam -- don't panic. IC is generally not progressive, so you will generally either feel like you do now, or, more likely, feel better when you find the treatments that help you.
:)

Have you checked out our patient handbook yet at http://www.ic-network.com/handbook? This is loaded with information about diagnosis, various treatments, and self-help strategies including the IC diet, which has reduced the symptoms of many, many patients.

Good luck, and don't be afraid... you will be okay. :) Also, know that the period of fear passes, and you will learn to live a new sort of normal life for you :)

[stacey79]

Hi and :welcome:, Pam. I'm so glad you've found the boards. They have been so very helpful to me in dealing with IC right now.

Here's what I will tell you as far as progression of IC. I've had it my entire life. My problems started when I was three. I've also had lots of trouble with UTIs, so sometimes it was just UTIs. When I was 13, I had a year or so of a flare. I took Ditropan and stuff. Then it got better. And by better I mean, I didn't think about my bladder every day. Just like always I was careful to not drink too much pop with caffeine or eat a lot of citrus fruit. Even that got better. After a very stressful time of being in grad school, my IC flared up again when I was 23. That was almost three years ago. The good news is that now I have found treatments that work for me (Elmiron, Ditropan XL and low-dose antibiotic to prevent infections). And I live a pretty much normal life. I don't think IC progresses for most of us.

I encourage you to experiment a bit with diet and see what bothers you. Remember we are all different. For me, I'm fine if I just avoid vinegar products, pop (aside from A&W root beer) and citrus fruit. But, I'm fine with chocolate, tomatoes and onions, which are major problem foods for some.

Pressure is also my biggest problem. Have you tried Pyridium? It works for me when I have an infection and is great with relieving pressure. It's the stuff that makes your urine orange. I think heat also helps with pressure. I use the heating pad and sometimes those ThermaCare patches if I'm going to be away. Warm baths are also nice, but beware of adding anything to your bath water. Bubble bath is a big problem for a lot of us.

Anyway, welcome! I know you will find these boards helpful and you will see that IC isn't the end of life. Most of us go on to lead pretty normal lives. We still work, raise families and all that stuff. :grouphug:

[Babs RN]

Pam,
You've already gotten tons of great advice, just wanted to say HI!

Hugs and :welcome: ,
Barb :grouphug:

[DanaW]

Ditto!! :) Wecome!!

Dana W.

[neal1044]

:hi: Pam;

:welcome:

[Amyinagony]

Hi Pam, Another :welcome: Glad you found us!!!
Everyone here has given you some really great advise. This is the best support group!!! Everyone is wonderful here!!!
I can also say that it got better for me once I was diagnosed and found a treatment to work for me. It took forever for both (over 5yrs). Now, I am SO much better. I still have some discomfort most of the time, but it's far better than the debilitating pain I did have. Flares can come on too, but they, so far, have been managable.
Learn all you can about IC. Knowledge is power!! Try the diet. Everyone is different with the diet and with treatment/s. Be patient with all of it.
There IS life with IC. Hang in there. Good luck. :grouphug: