New here

[ivyroflcopter]

Hey ladies and gentlemen. I'm 26 years old and married to a wonderful husband who puts up with my constant complaining and moaning and does a pretty great job of taking care of me when I let him. ;)

I was just diagnosed this past week with IC after being in excruciating pain for the past 6 months. I was finally on my 7th doctor when he figured out what was wrong. I've never had any medical problems until then. I started Gardisil shots in August, finished up in February and by then I had all these crazy symptoms that I had never had before. The most painful pelvic cramps, like menstrual but a million times worse and all on the left side. Even more excruciating pain during sex, it was so bad that we just had to stop completely. And if you asked me to hold my urine for more than an hour you HAD to be completely nuts.

I had a cystoscopy last week and I can't for the life of me remember what medication he put in, but it was god awful and felt like my insides were melting.

Currently I'm working on a pill cocktail as to what works best for me. Did anyone else find that Sanctura didn't help at all with the frequency?

Also, after having a cystoscopy, did anyone else find that they had to urinate even more frequently than before? The urgency has gotten a million times worse since I had it and I was wondering if that feeling goes away. I was thinking that maybe it's from swelling or the medication he put in.

Oh and I'm loving the green/blue prosed pee. My friends have started calling me Koolaid. :)

Anyway, wasn't sure where to go but saw this forum and everyone seemed pretty knowledgeable and nice so I couldn't resist coming here. :hi:

xox

[klite]

Welcome ivyroflcopter :hi:

I am really new to this board too, but your experience sounds quite similar to mine. Did you have an in-office cystoscopy or cysto/hyrdo with aenesthetic? I haven't had the cysto/hydro yet, but my in-office cystoscopy hurt like crazy too! And it definitely increased my frequency and urgency for a day and then leveled out over the next one.

Have you ever taken pyridium? That is what I take for cramping pain and burning during a flare and it turns your urine a very bright and dark orange. Just in case you want a change from the blue/green :) (but as other members kindly point out, it stains, so wear a panty liner if you like).

I can't offer any advice on meds since I'm currently not taking any. I'm following the IC diet and, under the care of a naturopathic doctor, cutting out dairy and all processed foods (esp. refined sugar). I've been transitioning to this diet for the past three weeks and I have already noticed an appreciable difference in frequency, urgency, and most importantly for me, pain. So I would strongly recommend the IC diet -- and start by cutting out all tomatoes, cranberry stuff, and caffeine. Those are the biggies.

You've definitely come to the right place for support. Good luck with figuring out an IC treatment plan that works best for you!

[ivyroflcopter]

I had general anesthesia and woke up crying like a big ol' sissy. ;) My doctor told me I had the option for in office procedures and after reading lots of people's experiences I don't really think I want to do that. Seems so painful for something that you don't know is going to work. Then again, being in constant pain is pretty bad too.

I think I may bring up Pyridium with my doctor because the pain hasn't really gone away. It's gotten a *little* better, but I want the pressure/cramping GONE! :)

The thing about the IC diet, my husband and I discussed this, is I don't really eat any of that stuff anyway. I eat fruit on some occasions but it's really not a significant amount. I'm more of a veggies, whole grains, chicken n fish kinda person. And I pretty much just drink water because it's ever so tasty. haha :) I'm just not sure what else to do to modify my diet you know?

I'm so new to this and it's frustrating. :( No one I know personally has this so everyone just thinks, "Oh she pees a lot." They don't understand the pain and the uncomfortable feeling of thinking you're going to urinate on yourself. :headbang:

I really hope the medication works. Thanks for replying, I sincerely appreciate it. It's nice having someone to talk to that knows what it's like. :grouphug:

xox

[VickiB]

:welcome: to the ICN ivyroflcopter!

Having IC is very frustrating -especially in the beginning, but it usually gets better.

If you haven't already found this, here's a link to the IC diet Cheatsheet: http://www.ic-network.com/diet/dietcheatsheet.html It's good to check your diet choices against this. I know I found that many things I ate were not necessarily bladder friendly. And I've found that for me, it doesn't take eating all that much of some items to set off a flare.

Yeah, it's hard to have this because not many people understand. Who'd have thought a bladder could cause such problems? I don't know where I'd be if I hadn't found this site with all it's information and the ability to talk to people who understood what I was going through. I think the more one learns about IC the better one can manage it.

Again, welcome to the ICN!

Vicki

[SharonA]

:welcome: to the IC Network...:)

For many of us, one bite of a problem food can cause a flare. I am not very diet sensitive, but I stay away from citrus fruits because they are a major trigger for me.

I am curious about something. Have your had your urine checked for infection since your cysto? The reason I ask is it is very common to have a bladder infection after being catheterized. Infections can be a cause of an increase in frequency. If you haven't had this checked, I suggest you do so very soon...like yesterday. *wink*

"My friends have started calling me Koolaid." Very funny. :lmao:

[KarenAnne]

:welcome: Hi Ivy!
Yes, listen to Sharon. I got an infection after my cysto/hydro. It took me about two weeks to recover from the procedure, I had a bladder biopsy done with it. I learned from here that it is common to get an infection after being cathed or scoped.

I had too much throat dryness from Sanctura but it did help my freq. I have had to try many meds before being put on amitriptyline & vaginal estrace to find significant relief. Unfortunately, it is all trial & error in the beginning.

You are in the right place for IC education & support. The support ladies here are wonderful: Sharon, Donna, Kadi, Leelee, & Jill are all the best (sorry if I forgot anyone). The most difficult time is the first 6-8 months, hang in there. :o) Karen

[ivyroflcopter]

Vicki - Thanks for the welcome! :) You know, I never even realized I could be so aware of my bladder until all of this started happening. I didn't even know a bladder could hurt so much. lol I've started exactly what I eat this past weekend and I can tell you that it's actually helped. I thought tomatoes were okay since I had pizza and spaghetti with sauce, but turns out raw tomatoes make me want to scream. So, thanks again for making me double check that page. lol :lmao:

SharonA- Thank you for the welcome! :hi: You know, I actually had my urine checked this past Wednesday and the doctor told me it was beautiful. I agreed, I really do love the color. haha :) But he said everything looked a-ok! I think I just need to give it some more time maybe. I still kind of feel like I'm not emptying all the way, but they checked at the appointment and I am. The sensation is getting a little better, I think it's just from the cystoscopy so I can't wait for that feeling to completely go away. :pray:

KarenAnne - Thank you for the welcome! :smile tee I'm sorry to hear you got an infection after the cystocopy. :( I can't imagine going through that too after, what a bummer. As for Sanctura, you know what? I thought I was CRAZY for how dry my throat got with that! It still gets kinda dry with Amitriptyline but Sanctura made my mouth feel like it was full of sand, it was especially bad when I was sleeping. :( Since you take Amitriptyline too, I was wondering something. How often during the night do you go to the bathroom? I'm averaging about 2 or 3 times currently, but was up to about 6 or so before. Was wondering if the longer you take it, the less frequency there is?

Thank you all the ladies for the wonderful welcome. :) It's really great having someone to talk to and ask questions to. I'm sure my husband appreciates it as well since he's kinda clueless about it no matter what I say to him. lol

xox

[KarenAnne]

ivy, Within two weeks, I was sleeping through the night on the amitriptyline. Before I knew about the diet, it was every 10-15 min., after the diet, at night- it was at least 4 times. So with diet & ami, I am getting significant relief.