How do you live with it?

[nikki0522]

Hi everyone,

So I have been "dealing" with this pain for 7 years now it all started basically when I started my menstural at 15 now I am 21 years old and the Dr's are just now finally letting me see a urologist. I am so excited and so scared at the same time. I have so many questions as to, why did this happen to me? How do you even get this disease? I know they wont know but I need to ask. Last week my husband rushed me to the ER because I was going through 13 hours of staright pain where I couldnt leave my bathroom because I thought I was going to pee my pants then the burning of my urthera and bladder kicked in seconds later. I just feel like it had been one thing after another with my body. 2 years ago I lost my baby and was diagnosed with cervical cancer, on top of it I am allergic to latex and have acid reflux. I just feel like at 21 almost 22 I shouldnt be worrying about these things. I should be out having fun and not worrying about "oh is this drink going to make me hurt tomorrow" or is sex with my husband really worth it for the pain I will feel later. I hate telling my friends I cant go out because I am in too much pain so I just sit in my bathtub all night and cry. This is seriously starting to affect my life and my attitude. I am very outgoing, nice and want to talk to everyone. I have that bubbly personailty but this disease is getting worse and it is taking so much out of me.

Some days I am perfect and most days I am not. I just want it to go away. I dont get why it had to happend to me. I am sorry for being negative but I am really struggling here. I just dont know how to stay positive anymore, my flares are acting up for no reason it seems like now. I stick to the IC diet very closely and they are still happening more frequently then they have been. Last year I went 8 months without a flare! What happend? Sorry for soo long, thanks for reading.

Nikki0522

[ICNDonna]

Hopefully when you see a urologist and finally get a diagnosis and appropriate treatments you will feel better. In the meantime, you might try keeping a very detailed diary of everything that goes in your mouth, activities, along with times --- you just might be able to identify what is causing your flares. Will you be seeing a uro soon?

Hang in there! You will have better days ahead.

Warm hugs,
Donna

[SharonA]

:welcome: to the ICN...

I am so sorry you are dealing with so much pain. It can wear you out and effect every part of your life.

It really is very important for you to see a urologist so you will have a diagnosis and then begin to discover what meds/treatments can help you. It really is possible to live a very fulfilling life despite IC.

Asking the questions you listed in your post is very normal. I would be willing to bet that we have all asked these same questions one time or another. I just wish there were answers to those questions. That would make it a lot easier to deal with IC.

I also want to let you know how sorry I am for the loss of your baby and your battle with cancer. Have you won that battle or are you still fighting it?

Sending you lots of (((hugs))). Please let us know what the uro finds when you see him/her. :):):)

[NancyB]

Dear Nikki -

I am sorry that you are going through such an awful time. Very sorry to hear about your baby and the cancer. You are right, you are too young to have all those problems. However, there have been quite a few others your age that have been diagnosed recently with IC that frequent this site. Hopefully, they will chime in and leave you a post.

Until you see the urologist, you might want to go and read the patient handbook on this site, specifically the section on oral medications. A bladder anesthetic might help you with some of the burning and pain until you see the doctor. You can get some that are OTC. There are more brands than are listed in the handbook that I hope other ICers will post for you. Another thing to make sure you do is to drink nothing but spring water with nothing added to it. Evian water is listed as ok in the diet section at this site, but many ICers cannot drink that. Make sure to keep well hydrated. Concentrated urine hurts your bladder more than diluted urine. Some ICers find some relief by taking an antihistamine. There are many OTC that you can get (e.g. benadryl, Claritin, Zyrtec and Tavist Allergy). Make sure you get only the antihistamine and not one with a decongestant. Benadryl is sedating, but the others are not.

If you have specific questions, by all means ask. There is lots of help here.

Hope this information is helpful to you.

NancyB:)

[Rubes]

Nikki -

I completely understand how you feel. My IC is fairly new, but I know that "sitting in the bathroom crying" feeling - we probably all do. I think most people will agree that once you see the uro, the worst part is behind you. There are so many things you can try to give you relief. (Prosed Ds, for me - saved my sanity, and allowed me to return to a normal life). Just try to keep in mind that you won't always feel like this - it can and will get better. I scared the daylights out of myself reading posts on this forum - but felt so much better after sitting down and reading the "success stories" posts and the "My IC is in remission" entries. They will give you hope. I was scared that I would never feel ok again - but I have WAY more good days than bad, now - and have hope that I will find even more ways of knocking this IC back.

I hope you can see the uro soon. Hang in there. I know it sucks now - but please don't fear that it will always be like this.

[statesboro]

I did notice you have gotten some good replies by now. I must realize you did not state that you had been properly diagnosed yet. It does sound like you have got it, but you know you are not alone. I felt lost at first.(1997) Yep! I have wondered why it happened to me more than once. I happen to be a male, by the way. I had never had any UTI's before being diagnosed.(4 since then) Hey! I now wonder if I will ever know. We don't enjoy having it, but it is still good to be properly diagnosed. Oh! I have cried because of IC some, too. You still have found a good place by coming on here. Besides, we will understand. It is ok to vent, too.(within reason) What about the cervical cancer? Has that been gotten rid of by now? By the way, I know a 15 y/o male that has got this dreaded disease as well. (diagnosed at kindergarten age) The reason why I actually brought that up is simply because he wrote back in December and mentioned about some friends not understanding why he does not want to get together sometimes. Yep! You stated something like that. Ok, then. I will let that be all now.

[L. Thomas]

:grouphug:

I can't imagine going through what you have been through at such a young age. I hope you find treatment for all your problems soon. There are 100's that find medical treatment that manages IC. There are many many treatments. Finding support is very important.

You will find plenty of support here. Don't ever appologize for anything here. We all have things we need to get it off the chest and this is a good place to start..we can take it..bring it on!

Louann

:welcome:

[nikki0522]

I apperciate all the replies, I get to see my uro soon, just waiting on the referral to go through so 10 days at the most. I just cant believe so many people have been going through this for so long and I thought I was so alone.

About my cancer yes as far as I know it is gone, but my body is acting up again so I either am pregnant or have the cancer back, but once again I have to go back to the drs for one other thing. But I really do apperciate everything! =] I hope I get diagnosed fast so I can start feeling better asap! =]

Love to all!
Nikki0522

[SharonA]

I am hoping it is a baby and not the cancer. Please let us know as soon as you can. (((Hugs)))

[nikki0522]

I hope so too! I will keep everyone updated! I am going to wait till end of next week to see if my AF shows and if not then I will test. =]

Thank you all for the support, everyone has helped me change my attitude around. I know in the near future I will start feeling better but I was so discouraged after last week of constant pain. But I will try to keep my head up and hope things turn around soon.

Has anyone on here tried the cystoprotek (cant spell) and work for them? I would love to go all natural before I use dr's medicines. Any input would be great! Thanks again =]


Nikki

[keydawn]

I'm new too (dx in January). I started Cystoprotek about 4 weeks ago and I'm also taking Desert Harvest aloe vera. Because I started them both at about the same time, I don't know which one is helping, but so far I am doing much better. They say that it takes 4 months or so to see beneift from the Cystoprotek, but I've read that others see positive results more quickly. There is a lot of information on this site- and there is also good information on the company's website. I found an article detailing why the developer believes that Cystoprotek is helpful for IC.

For me, this combination seems to be working well at the moment and so I plan to continue. I'm not taking any prescription meds now but I'm also following the IC diet. Since starting the combo I've seen a significant reduction in burning pain, bladder soareness, and frequency. I think that the Cystoprotek has also helped reduce my "IC belly" because some of my clothes are fitting better.

Anyway- I had an appointment with a urologist last week, described my supplement regimen, and he advised me to continue with that since I was having success.

I really hope you start feeling better very soon! Like so many others, I believe that we can begin to heal and get back a high quality of life!

Kelley

[Tinkerbell23]

hey, i hope when you see your uro you'll be able to start feeling better, there are so many different treatment options. i know how you feel. i was diagnosed at 22, i am 25 now. and it was hard, but it will get easier and you just have to keep telling yourself that. it might take awhile, i have been on this roller coaster for 3 years now and knock on wood i am finally starting to see improvement. the ic network is a great place to vent and get great advice and info, so welcome. good luck with everything and pm me if you ever need someone to talk to.