I feel like I'm too young for this

[JValentyne]

I found this site after talking with my urologist and turning to Dr. Google for answers and hope. It seems like lots of answers exist, but not a lot of hope. I was diagnosed last month and have been put in a low dose of Amitryptylin for starters. I meet with my urologist again in a few weeks to discuss and start other meds (among them elmrion).
I'm twenty years old, and I can't help but feel like I'm too young for this to happen to me. The fact that it is is so incredibly depressing. I'm on the IC diet, and being a college student, it's so incredibly hard for me to find things to eat that sometimes I just don't bother and stick to crackers or bread. With the holidays here and gone, it's been especially hard. I do have great friends and family who try to have stuff available for me to eat, which is nice: But I feel bad because they have to go out of their way.
I came here and read some great stories that gave me way more hope than Dr. Google, but I'm still struggling with this. I mean, this is permanent. I feel like I should have been twice my age when something this permanent happened. I wanna know, is it going to get worse? Better? Or is it going to stay the same? I'm already struggling with premature arthritis and degenerating joints, which really doesn't help much either.
In the face of this, how do you stay positive when it seems so hopeless? Do you eventually accept it and move on? I'm sorry for seeming like such a downer, but it just seems really bleak right now, especially now that bills from all the tests are coming in.
It is nice, though, to peruse this community and see hope and encouragement. So, maybe someday I can look on this diagnosis with a lighter outlook.
Sincerely,
Amanda

[dyno]

Hi and welcome!

I am glad you have found us. I know how hard it is when you are young. I was younger than you when I was diagnosed and I am going to be 53 now in a few months. It is just going to take time to wrap yourself around this but getting started with your treatment and watching your diet will definately help.

We are all different in how we respond to treatments so you will see a wide range of treatment combinations that work for people. You have to also remember for all that you see here on the boards, that there are thousands more that don't come to the boards anymore because they are feeling better and out living their lives.

We all usually will have good and bad days and it will take time but you will learn how to manage this. A link to the ICN diet guide is in my signature line and as you look through the site you will find all kinds of information.

We are all here for you.

[jcarramu]

My thoughts are with you

Amanda
I can imagine how confusing this is for you right now. just know that you will have times when you feel great and can't remember the bad days, just try and focus on them. I was diagnosed over 5 years ago but they figured I have had IC since I was 25. I would go through months where I would have extreme pain and spasms. I went from Dr.to Dr. and was told it was stress, IBS, Fibromyalgia and all kinds of other things. It was so fustrating not to know what was wrong. At this time be thankfull you know what you have and they have a place to start. Like is said often on this site, everyone's treatment is different and every one reacts differently to different treatments and foods. Be your own advocate and get as much information as you can. I find keeping a journal is always a great help. I keep a diary with the food I eat and drink, pain level, naseau level, medications I am taking, and so on. It helps when I have a bad day and it helps when I see my Dr's.

Find a good support group and a good Dr that understands IC. My Doctor told me to tell my family and friends I have food allergies to explain my diet rather than trying to explain to them what IC is and why I can't eat certain things.

Good luck to you and try to keep a positive attitude. And when you need a some support send me a note

God Bless

Jacquie

[tara73]

It is all prolly a little overwhelming right now but I can tell you knowledge is power. It sucks being diagnosed so young but it is good to know what is wrong. I am 37 and have only been diagnosed a year. But I can tell you now that I had urinary symptoms for many years. I just always thought it was normal to go to the bathroom many times a day. I would stop at gas stations several times a day to use the restroom. And when I would drink alcohol, my friends would always make fun of me because I would pee every 5 minutes. Again, I didn't attribute this to a disease, just thought I had a small bladder. I spent several years off work due to a back injury and when I went back to work it became obvious that something was wrong with my bladder. First I tried meds for overactive bladder (and I sure wish that was the case) but those meds didnt help at all. I was referred to a urogynecologist and he did the cystoscopy and diagnosed me. By that time, I had quit the job because I was going literally every 5 minutes the entire time I was at work. I couldn't get any work done.
Anyways, my point is that many of us had symptoms in our twenties but weren't diagnosed. So maybe knowing what you are dealing with will help you. Also, people have remissions. Some people go years without their symptoms bothering them. Not every case is severe. Some people manage with just dietary changes. Others respond well to meds.
I know it gets real depressing and frustrating at times but you will have good times too. If you are in college, it might help to tell your teachers that you have a bladder problem and need to use the restroom frequently. You can also get your doctor to write a note stating that. I don't usually try and explain IC because people just don't know what it is. But legally, if you have a disability you are entitled to special accommodations for your disability.

[too_young]

I also was younger than you when i was diagnosed I just turned 17-I completely understand some days are so horrible and family and friends do not understand,One thing that helps me is a heating pad especially at night time. Also taking all of the medications your doctors give you-It may also help you to seek a therapist or counselor. I remember the first time I came on this sight I was so frustrated because its so hard to stay positive feel free to come here and vent

[JValentyne]

Thank you

Dear All,
Thank you for the replies and the advice. I'm trying to stay positive and not get frustrated. The idea about explaining it as a food allergy is actually really helpful. My mother means well, but she just doesn't understand no matter how many times I explain what's going on, which is probably why she can't comprehend why I've had to change my diet so much. Maybe explaining it as a food allergy will help her understand.
Unfortunately, because I live in a small town, there aren't that many support groups around here. But my campus does have free therapy sessions for students, so I'll probably look into that, since it seems so bleak right now and hard to deal with.
I guess I'm having a hard time dealing with it because I thought it was normal to go to the bathroom so many times a day. I didn't even go to the doctor until a few months ago because it was getting worse than normal and then they thought I had kidney stones. A series of tests (CT, blood tests, etc) followed, which only added to the stress levels. So, part of me is happy that I have a diagnosis to explain my bathroom habits, which helps, but I guess I'm still not totally at peace with it.
Coming here helps though, which is nice. It's nice to get some hope and encouragement, and even to vent or be vented at by people who understand- a novel concept even among my close group of friends, where my bathroom frequency is a source of amusement.
So, thank you to everyone here- it's really helpful to have a place like this and to get encouragement.
Sincerely,
Amanda

[Rebel78]

Understand

I totally understand where you are coming from...I was diagnosed at 19 with Polycystic Ovarian Syndrome...problem was I only had two symptoms, my overies and my infertility (I'm 5'3'' and have never weighed more than 105lbs, I have no hirsutism, etc for anyone who is familiar with PCOS)...I struggled with that for 12 years of marriage when it was clear that my marriage wouldn't survive. During my divorce at 31 I started having the truly painful symptoms of IC (looking back I have had symptoms for a number of years prior but never evidently a flare as bad as they have gotten)...that is when I was diagnosed.

Yeah, 31, divorced, infertile, and now 'painful bladder' with a mix of incontinence...fun times for all...

What finally drove me to the doctor was that I stood up at work on one of my more painful days and realized I wet myself!! I was humiliated and practically ran out of the office... I go to my doctor who told me "well, as women get older they tend to loose some control" !!! At 31 !! REALLY!!

I am new to this board too, but one thing I have learned is that knowledge is power. And the more you know the better you can prepare yourself.

I also know that it seems frustrating for me that there is not one single 'type' of IC or a specific food or ingredient that sets off everyone, there is not one single treatment....so it seems like a mere guessing game of sorts as to what works...that kind of sucks..

As for telling anyone...hmmm...I am struggling there as well. I didn't tell anyone, no one, not family or work, no friends, no one. However the worse it has gotten I realized that I am a talker and I needed to break my silence. In the past month I have told most of everyone close to me, however as you say...you really can't get people to really understand the realities of it. But at least by telling others around me then I don't feel the need to hide when I am having a bad day...I can just say that my IC is 'acting up' and they understand (to the best of their ability).

Hopefully you will find something that works for you and you can lead a full and happy life. Don't give up on finding the 'one' thing that works for you. Keep pushing and know that you have the power to find the answers. As young as you are...you may find the answers for all of us

[Capey]

Hi Hun, first of all welcome. I am from the UK so sometimes feel a bit cut off, but found this website and its great.
Listen up OK, there are tons and tons of treatments out there. What you have to do is find what works for you.
Remember this is a sort of flare up thing, I have weeks an weeks when I feel on top of the world, then get a flare up, get fed up, hate everyone and generally feel miserable until it passes.
I find the IC diet is great, of course it means no booze for me, but I am coping with it (although I think the buddist monks are having more fun) there is an advantage that I am losing weight due to no alcholol.
Herbal teas like marshmallow and licorice are great for rebuilding. I am not taking an drugs at the moment at all (thanks to the National Healt budget) but am fighting this off with diet, enough water to float an elephant and keeping positive.
Chin up, you are soooo not alone.
Bridget
oh and PS. Yup you are young, I am not :-( but there are others out there of your age and hey, loads of people are on restircted diets for various things coeliacs and all that stuff, most of the junk food we eat is just rubbish anyhow, that if you look at the IC diet, just think untampered, unprocessed and therefor actaully much better for you - who wants to turn their precious body poisonous with all that junk.

[melmel161]

Hi, I'm in a very similar situation! I'm 19, in college, and I was diagnosed a month ago but have had it for almost a year (diagnosed with UTIs all the time). First I'll share my story/problems with you a little bit then give you some suggestions on what has been working for me!

Well, like I said, I'm 19. I cry almost every day and wonder why this is happening to me when I'm so young. I feel like I need to wake up from a bad dream or something! On top of the never ending flares, there are a few things that especially get to me being someone so young (and pretty much get to everyone with IC). The biggest thing is food. I can't even explain to you how much I've been craving chicken wings slathered in hot sauce over the past few days. Knowing that I can never have them again is not a good feeling Also, I can't drink anymore.. which really sucks when you're in college. Of course there are other ways to have fun, but it is NOT easy when you're surrounded by it. The other thing is sex.. I've been misdiagnosed with a ton of UTIs for over a year, so I haven't had consistent pleasurable sex with my long-time boyfriend for a WHILE. But I kept thinking eventually someone would find out what's wrong with me and just fix it! Knowing now that I have IC, and that it won't go away, is terrible. Knowing that it can't be 100% cured is the worst part. But my boyfriend seems to understand, although he's new to the whole situation as well.

Enough of me complaining, because of course you understand that. Here are some suggestions that may help you:

1. Get an IC cookbook! There are mixed reviews on a lot of them, but my mom looked into it and ordered me one that seems to be great so far. It's called Confident Choices: A cookbook for Interstitial Cystitis and Overactive Bladder. It's by Julie Beyer.
I love food, and believe me I know how much this whole thing sucks. I was diagnosed a little before winter break, so resisting temptations during that time and having to eat the most bland food ever was hard. But this cookbook gives me hope! It has a lott of really good stuff in it. I live in an apartment at school and have started cooking dinner with the recipes.. they're really yummy I've tried making one of the deserts and it was awesome!!! I was devastated when I learned how much stuff I couldn't eat. I was so drowsy after the cystoscopy and when they gave me the list of stuff I couldn't eat I was like wait.. whaaat??? So look into a cook book!!

2. There are ways to stay positive! I realllly feel you on how this can make you depressed, I've even cried twice in the past couple days. BUT, just think about how much healthier you'll be! Not drinking, and not eating spicy and fattening mexican and chinese food, will make you feel better down the line. And I'm not sure where you stand, but I've lost some weight and I'm feeling pretty good about that Also, just think about your future! Hopefully, with the right combination of medicine and diet, your symptoms will decrease and you will feel much better. Just view this as a journey that will end well

3. Make yoga or some light exercise a routine. I haven't started yoga yet, but I'm about to sing up for once or twice a week classes. I'm used to doing weights at the gym or trying to run, but this kind of exercise isn't great for people with IC. Yoga is supposed to be helpful by relaxing your bladder and stretching some core muscles. Yoga also calms you and helps to eliminate stress. This is good because stress can cause flare ups (but IC causes flare ups, so it sucks!). Try yoga or walking and permanently fit it into your schedule!

4. If you have urgency, try and wait to pee, even if you really have to go. I don't know if you go through this, but a lot of times I will pee, then get a flare up and have to pee again 20 seconds later. Try and wait when this happens. The first time wait as long as you can - a few minutes maybe. Try to increase this each time. Train your bladder to be stronger and hopefully you will see results and won't have such extreme urgency!

5. Think about how you can help others that struggle with IC. I'm always down on myself and thinking about how IC is ruining my life. But other people have to go through this too, and think about how you can help them by sharing your experiences. Maybe with your help they won't have to go through some of the pain that you did!

I just joined this forum, but feel free to email me or something if you need anything!

[bob04951]

Sorry Amanda, and don't say there is no hope! Many here go into remission, sometimes for months or even years. You just have to get the right combo going and do continue to watch the diet. So very important. You will hear that some say diet does not affect them yet they are in constant discomfort. Our uro actually told us diet has nothing to do with symptoms (don't see him anymore). We miss our stuff, tomatoes, mexican, chinese, etc. as well. We loved all those things. But you get used to it. Just think of it as another chapter in your life, and maybe someday you will turn the page and be in another chapter, with a happy ending, and maybe all will be there with you. Don't be discouraged. Try to get as much rest as you can, power naps and all, sleep is healing. Study and do well and take that stress off if you can. Glad you have family who understands. That in itself is huge. As said to others, if you have just one person who gets it, you're halfway there. Good luck to you in the new semester. Don't let it get to you. Jill, wife of Bob

[Maia]

Amanda,

I have not been diagnosed with IC. I will be seeing a urologist this Friday and hopefully get some answes. So far other tests came back perfect, although symptoms stuck around.

I understand that feeling of being helpless and depressed. I am 28 y/o and feel like I am too young to be having these issues. The whole "I am young, it's not fair!" phrase has been running through my head, too.

Just want you to know you are not alone with these feelings. The words you wrote could have come out of my own head. And I am really bummed to not drink wine... I love a glass of red! And dark chocolate...and Indian food. It's sad, but I think keeping our bodies healthy is best.

Sounds like the IC diet is really helpfull. I've just started it. I figure that even if I don't have IC, it will help the bladder issues I am having.

Be well and remember to pamper yourself lots.

~Maia