New here, but not to IC

[MelissaJ]

Well, I am new here, but not to IC. I have had it ever since I can remember, I am 23 years old, but I think it started when I was four or five years old. To be honest, I can't remember ever not having IC. I first went to a urologist when I was about four, and it took almost 10 years to actually diagnose me. At one point they decided I was making it up in my head and told my parents to ignore me when I kept having to go to the bathroom. I also had to go to a counsellor because the doctors decided I was just going to the bathroom and having "stomach aches" all the time because I wanted attention. Well, it turns out my stomach aches were actually bladder spasms.
I was finally officially diagnosed when I was 14 years old. But my urologist was going to retire, so he tried to find me a new urologist. I went to several doctors, all who diagnosed me as having IC ( the kind with the hunner's ulcers) but none of them wanted me as a patient because i was too young. So, I have been without a doctor since I was about 16. My GP prescribed me Elmiron when I turned 18, because he and my old urologist had worked together and decided that was what was best. It seems to be working. I recently went to a new urologist, but he said there was no way I could have had IC before the age of 18 – so I walked out of his office. There are no specialists where I live and the drive to Edmonton is 2 hours with only one restroom along hte way, which makes it difficult.
I work as a journalist, which is trying at times. But I think because I've had this disease I am just used to it. There are days that are worse than others, but I can deal with it. And my family is a lot more understanding now that they know I have a real disease.
My boyfriend of a year and a half is also very understanding, he is the first guy I've dated who actually asked me how to spell interstitial cytitis so he could research it and understand it a bit better.
So, that is pretty much the story of me. I hope to get to know some of you and what your lives are like and how you cope and also to let people know how I cope.

[Katrina]

:welcome: to the ICN!! I had my first symptoms at age 13 I think....that doctor telling you you couldn't have IC because you were so young...grrr. It saddens me and angers me. What will it take to tell the world? I am so glad you have a very understanding boyfriend! You will find a lot support and understanding here...along with a lot of information to make living with IC (and a lot of other things) easier.
http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

Please let us know if there is anything more we can do for you, and keep us updated on how you are doing. Welcome to the family!
:grouphug:

[Dixiefireball]

:hi: and :welcome: to the ICN family I'm so glad you found us. I'm sorry that dr. you went to was an :loco: The good news there not all like that but hard to find.
I look forward to seeing more post from you.
sending you hugs and prayers
Rhonda

[MelissaJ]

Hey. It was great to hear back from you guys! Normally I can deal with my IC (flares, pain,etc) because I have been doing it my whole life. It's dealing with other people in relation to my IC I can't stand. I know there are other doctors out there who are excellent and actually know what IC is. It's just that with the 2 hour trip it isn't really feesible. And the waiting list for the uro who comes here is almost 6 months long and the problem with that is I just am starting my career so I could move before then (that's what happened at the last place I was in, I applied for a better job and had I signed up for the billion month long wait list, I still ended up moving before I would have seen him). Oh well, it's nice to be able to talk to people who understand.

[ICNDonna]

One thing you might consider is to take along a container you can use where there aren't any restrooms. Another option is the Travel John, which is available in the ICN shop and can be used in the car (it's best to wear a dress :)). You'd have to stop the car if you're driving, but it would make it easier to get to a different doctor.

I hope you feel better soon.

Warm hugs,
Donna

[mayray518]

I feel so sorry for you having go get the runaround from the docs at such a young age. Everyone here knows what you are going through. I suggest you read the Patient Stories on this site. They let you know you are not alone and we are here for you.

[VickiB]

Hi MellisaJ and welcome!

As if dealing with IC isn't bad enough, it's not uncommon to have to deal with unsympathetic (as well as ignorant) medical professionals, employers, friends and even relatives! However, it sounds like your family has come around to being supportive and understanding, and you've picked a winner for a boy friend. -Hold on to that guy!

I hope you are able to find a good Urologist you can work with soon. That one who told you it's not IC before 18 years old is way out of touch! And good for you for getting yourself the heck out of there! It does often take a bit of shopping to find the right doctor, so don't give up.

It sounds like you're dealing with your IC, and probably already know about diet in relation to flares. If not, please do check out the diet information in the link Katrina gave above. For some it works wonders.

Wishing you pain-free days,

Vicki

[Sarojini]

Hi Melissa and :welcome:

I too remember episodes of urinary frequency and urgency during childhood -- I can remember back to when I was 8 or 9, and my primary care doc at that time did a dispstick, said there was no infection, and told my parents that it was either stress, or that I had a small bladder, but regardless, I'd grow out of whatever the problem was when I hit puberty. WRONG.

Anyway, now I'm under treatment (I was only diagnosed last March, about a month before my 30th b-day) and can say I'm feeling better now :)

I hope you're able to find a great new doctor soon!!! :grouphug:

[MelissaJ]

Hey it's nice to know there are people who understand. I write to a few other people in Canada where I live, but it's always nice to garner as much support as you can. And that thing you use in the car wouldbe good except I don't wear dresses very often. And actually, at this point I am fine without a doctor. My IC is pretty much under control except the occasional flare (like yesterday). When all I wanted to do was lay in bed and prayed my bladder would explode. But, that didn't happen and probably with good reason

[sleepyangel30]

hey melissa nice to meet you i'm so glad you joined.... by the way i had ic about a yr. i'm doing so much better myself i feel almost like a normal person. my ic act up every now and then but.. I don't let it steal my joy and happiness because I strongly believe in myself i think of the postive not the negative. :)

[MelissaJ]

i agree about thinking positively. Whenever I get down about having IC I make a list of all the things I can still do and remind myself that while having IC sucks, there are a lot worse things out there. It always makes me feel better.

[Babs RN]

Melissa,
Welcome to our group! We are happy to have you and to have you share some of your long term experiences and coping skills. I look forward to getting to know you.

Hugs,
Barb :welcome:

[MelissaJ]

I am looking forward to getting to know all of you as well and learning what your coping strategies are.

[traceann]

Hi Melissa! After reading your info, it reminded me of my way long ago past, and all the "UTI's" I had, makes me wonder now just how many of them were actual UTI's and not flares. So when I put it in terms of that, I have probably had this for 18 yrs before I got a name for it. It was to the point that I would just call the doc's office and all it seems I would have to say is "yes, it's Tracey again I have another one, here's my pharmacy name", lol. I think only one time did the GP make a comment to me that if I am getting them this frequently, and if I get yet another, I should go see a gyno. At the time I thought a gyno for a UTI?? Oh well, live and learn I suppose.

I understand about qualified docs being hard to find, I live in a very rural-type area, and I drive appx 40-45 min to my gyno's office, one way. And there's a lonnnnnnng stretch with no bathrooms at all...ugh. On a recent 3 hr trip with my sweetie to Thanksgiving dinner (as NOTHING is open, there were lots of potty-prayers said on that trip!), I actually entertained the idea of a 5 gallon bucket in the back of the Suburban! And he thought I was kidding-- at first, lol. :)

Well, I just wanted to give an official hello to your post!! So, HELLO!! :)

Warm fuzzies,
Tracey :)

[MelissaJ]

Funny you should mention the bucket idea. When I was younger my family used to drive to Vancouver a lot to visit friends and family. It is a six hour drive and there isn't always a bathroom right when i need one. So, my dad came up with the idea of putting the portapotty in the back of the truck ( with the canopy on of course) and because I am pretty little I would just crawl through the back window whenever I had to go to the bathroom. I read about a lady with ic once who had a "van with a can" that seems like a pretty good idea sometimes.

[traceann]

Oh yeah, I agree! When you have to go NOW you don't really care too much about where it is, a bucket, the woods...Did squat on a picker-bush one time, I guess I should have taken a flashlight with me..

Tracey :)