Just Diagnosed, I think

[ivysuzanne]

Hi there! My name's Rachelle...I'm 24 and have been married for 8 months. I was diagnosed or something like that with IC and vulvodynia on Monday. I say that because I have no health insurance and it was a clinician at Planned Parenthood who said these are what I have...she gave me a referral to a gyno or urologist who I assume can do more official tests than she was able to do at the clinic? Either way, I read the info she gave me on them and wow....I didn't know this had a name, I thought it was my life!

When I was a kid I suffered from intense UTIs often. Once the infection spread to my kidneys and I had to go to the hospital. As I grew up I became used to feeling pain "down there" and just figured it was a UTI; I'd drink lots of water and cranberry juice and wait for it to go away.

Looking back, it's hard to figure out when the UTIs stopped and the IC began....or maybe it was a mixture of both. Either way I've been dealing with the pain most of my life and always figured it was just me.

I waited for marriage to have sex, so it was a surprise when I got married and found the pain getting worse, and the way it affected my sex life. That's what drove me to try to figure it out...I read about vulvodynia online but it was a surprise when the clinician said IC. I had never heard of it. Then I read the symptoms and it blew me away, haha! I had no idea it was a thing!

Fortunately my pain comes and goes, but I hurt at some point every single day. The pain is usually about a 5 and I can ignore it, only sometimes I get very intense pain that leaves me crying out. I also use the bathroom a ton, guess I'm going to need to learn bladder retraining? My family always poked fun at me for my small bladder and it always made me feel bad...I've been keeping track and on average it seems like I use the bathroom more than 50 times a day. I wake up 3-5 times a night too.

Anyway! So that's my story. I'm here to try to gather information because I felt absolutely LOST right now...I am glad, though, that there is a name for this and even though there's not a standard treatment, at least I have the internet as a resource and can try to figure out what works for me. :)

[Sprockets]

Your story sounds extremely familiar to me. My symptoms began in childhood as well. The thing I would recommend is that you gather information, as you're already doing. That way you'll be able to make informed decisions about medications, procedures and lifestyle changes. Do what seems best to you. Surround yourself with supportive people.

[imwood]

Hi there! ((My name's Ivy, nice handle! ;) ))

My family always used to joke about my "mysterious bladder" as a child, because it seemed like no sooner would we stop for a bathroom break on long car trips, I would have to go again. Or, not five minutes after asking "are you SURE you don't have to go??" I'd be suddenly begging them to pull the car over, because I absolutely could not hold it. I still remember my "mysterious bladder."

I've never considered bladder retraining, as holding it in too long only makes my after-pains worse. I usually go once I get the second round of gotta-go signals. On a good day or week, that's about once every two hours.

As for cranberry juice... I'd be real careful. My two extremely bad flares in the past year (before I was diagnosed) both started with cranberry juice. Not the sweetened, fun anyone-can-drink-it kind, but the serious, blood-red, makes-your-mouth-cave-in pure cranberry juice. I thought I had a UTI both times and was trying to beat it out the natural way. Unfortunately, highly acidic foods, especially something like pure raw cranberry juice, is hell on an IC bladder. I ended up in the ER both times.

I got much better with nighttime pottying after my hydro-distension, and happily, it's still under control, even though I've had a pretty rough flare since then. I can make it a good 8hrs through the night, even though I wake up having to pee, I force myself not to get out of bed & go back to sleep.

[Sprockets]

Imwood, I'm with you on the cranberry juice. If I hated myself and wanted to bring on a flare, that's what I'd drink. That or some Coke. God, I used to love Coke.

Wow, your bladder training story took me back. I was just a little tyke wetting the bed when the brutal military doctors decided I had to hold it forever before peeing. I remember sitting there crying because I had to pee so bad and my mother would be yelling at me to hold it. Talk about seeds of trauma! Then the doctors decided I needed to have no liquid after 5 p.m., but my father took pity on me and said I could have one small glass of water. He put the small glass of water on the edge of the table and I remember staring at it all night, my mouth parched like someone who'd travelled across the desert. . . and I couldn't have been more than eight years old.

So yeah, I have issues around urination.

I get up from two to five times a night to pee, which means I don't get any more than three or four hours of uninterrupted sleep at night. And that's if my cats don't decide to go on a yowling rampage. Spousal Unit started to come down with sleep apnea, with the horrible snoring, and I sent him down the hall to the other bedroom, then got him a CPAP machine. Then he lost 30 pounds and now he doesn't need the machine and is actually allowed to sleep in the Big Bed if he's good! :smile tee

We all have food triggers, but I think most of us can agree that citrus is verboten. Sad but true.

[dyno]

:welcome:

Hi and welcome to the ICN. IC could very well be what you are dealing with and it would be great if you could get into another Dr. who works more with the IC to help you.

I certainly understand the no insurance. There are other things you can try on your own to help. In my signature line there is a link to the diet. Diet is very important to most of us in dealing with IC.

IC sometimes reacts to the hormone changes in our monthly cycles so that can be a monthly flare for some people.

Even the water you are drinking can bring on a flare. I use only bottled spring water. I buy ph test strips to check mine. Ph of 7 or above is better. Sometimes the chlorine in city tap water is a problem for people.

So the best thing to do until you can get some more help is to read the message boards and forums. There is a wealth of information here.

Hugs!