Newbi ICer

[WishingWell]

Hi.

I just wanted to share my experience:

I am 24, a mother of two, and seemingly healthy.

My IC problems just hit me like a ton of bricks out of nowhere around the beginning of January of this year. It was late night the first time I noticed it; I realized I kept getting up every hour to pee. I thought it would go away.

The symptoms progressed to the point where I continually felt I had to pee and voiding didn't relieve any urgency whatsoever!

In the beginning, the frequency and urgency were so bad, I wished I didn't have to live anymore because it was so aggravating and consumed every second of my life.

I sought help from several doctors, had negative urinaylisis tests, went through several courses of antibiotics, but nothing completely got rid of of the problem--though the severity of it did decrease some.

There is so much to say about this illness, that I don't think I could say it all in a short blurb.

It keeps changing on me. One day's good. One's not so good. Some days certain foods seem to provoke it, and sometimes not. I even had one whole week with no problems, only to have it come back. (!!!?)

I had a cystoscopy done yesterday with no anesthesia, and it burned and ached so terribly bad! The uro didn't see any structural problems with my bladder, but still diagnosed me with IC due to my reported symptoms and the fact that the cystoscopy hurt so much.

I just wanted to meet others who understand what I am going through. I do feel alone. I am a stay-at-home mom and just feel like nobody understands. My home has gotten so messy because I am always too tired and uncomforable to get up and around to fix anything. I feel like my life is starting to fall apart. My husband tries to be sympathetic but I feel that he isn't trying hard enough to understand how stressful this is to me. It just seems life doesn't slow down for IC--you just get plowed over, regardless of how you are feeling and have to try to keep up!

Anyhow, I thought I would share here because I don't know who else to relate to. Thanks!

[TexasHoney]

:welcome: to the ICN. I'm sorry that you have IC but I'm glad you found us. Now that you've been diagnosed I hope things get better for you.

Hang In There

[jameson77]

:pray::welcome:

You have surely found the right place for support. This place has gotten me through rough times as well...and i always come here if i am feeling down or have questions. I am glad that your doctor is on top of things...it took me like two years to get the dx i received this past Friday! Has your doc started you on IC-related meds yet? Yes, some days are rough, but others are way better. It helps to have a sympathetic hubby and family. There have been weeks that i asked for more help from the hubby because i felt so bad. I do not have children yet, but i am sure you have your hands full!

Always know you have support here! I hope you feel better soon and that your doctor has a good plan for you. Something that has really helped me is the IC Handbook, here...tons of reading and information...you might want to check it out if you haven't already!

http://www.ic-network.com/handbook/

Best wishes and hope that you are feeling better soon! :pray:

Meredith

[c2miracle]

Hello "wishing well", and welcome to our wonderful support group. I was diagnosed last year and my fellow ICers have really helped me thru difficult days. I'm very happy you have found this site! :) I understand how overwhelmed you feel. When it comes to housework, I have to be put in the right frame of mind and remind myself that I can't do it all, and if I try I will pay for it the next day! My husband and two girls help out and are very understanding, but I still feel I am such an "inconvenience" for them. So Hang in there and take care of yourself first.
Have you started the IC diet? I started the day I was diagnosed. The diet had helped and it's really trial and error. There are some things that I can have that other ICers may have a probelm with and vice versa. Drink lots of water! That has saved me! You will get loads of information and the support you need. Welcome and Think Positive! :smile tee

[SharonA]

Just wanted to say :welcome: to the ICN...

Take a look at the IC Diet. It can help with symptoms. You can find the link to it in my signature below. :)

[WishingWell]

Thank you for the welcome! :)

My uro gave me the option of pills or DMSO instills and I chose the DMSO, but now I am really having second thoughts. I really want to go as natural as I can but I am not sure what to do. What do you all think?

[VickiB]

Hi WishingWell,

Glad to have you join us!

Its not unusual to feel that nobody understands. I know I felt so relieved to find this site where folks knew what it felt like to be in my shoes!

If you haven't been there yet, here's a link to a page about various IC treatments: http://www.ic-network.com/treatments/

IC is funny because there's no sure-fire guaranteed treatment that works for everyone. Some find meds to be their silver bullet and the next person does well with DMSO. The one good thing is if the first thing you try doesn't work, there are other options.

Most of us do get to a better place than when we were first diagnosed though!

:welcome: to the ICN!
Vicki

[elamar]

sounds like you might need to be on some antispasmodics to get the urgency and frequency under control. I can't believe your doctor hasn't started you on some already. The main ones are prosed, urelle, utria-c - these turn your urine blue and are safer for long term use. There is also pyridium which turns your urine orange, only meant for short term use. Also wanted to mention ditropan xl (generic version) was very helpful for me. Be careful about overactive bladder meds (like vesicare, detrol, sanctura, enablex, etc). They don't tend to work that well for people with IC. I personally use utira-c and have good luck with it. I used to have to take both ditropan xl and utira-c at the same time to get relief since my spasms were so overwhelming. You need to ask your doctor about these. If you can't get an appt., they can be called into a pharmacy over the phone. Hope this helps. Good luck to you.

[ICNDonna]

I'd just like to add another :welcome: to the IC Network family.

Donna

[vm]

:welcome: Wow, I could have written the entire first part of your post when I came around here 8 years ago!!! You should read my story - it's linked in my signature area below my name. Very, very similar symptoms.

I hope you'll stick around - this place is the BEST for educating yourself, finding support, and just not feeling so alone. :) Hang in there - it gets better. :kissing:

[mary124]

Another big welcome.
You've come to the right place.

[WishingWell]

Thanks again! I do feel comforted that there is such a great support group here!

Today is not the best day for symptoms. I have my usual frequency and also some sort of virus my preschooler brought home with her. Fun! :bonk:

Anyway, I made another appointment with my uro for next week to discuss all my options. In a way, I would like to start with the diet and work from there, but I am not sure. I just always seem to get negative side-effects from medicines and want to avoid that if possible.

Some interesting things I have noted:

*On days when I don't eat much, the frequency seems to improve.
*My Chamomile/Lavender tea also seems to help.
*Stress seems to make things worse.
*I am suspecting MSG as a possible flare culprit.

I really enjoy hearing from all of you and the things you find that help your IC!

Holly