Does anyone in their 20s have IC????

[daisi24]

hi, I wanted to talk to other people with IC in their 20s. I am 24 yrs old and my dr thinks that I have IC. I am really lonely right now because my friends are not supportive and neither is my soon to be ex husband. I feel like I havent been able to have a life because of this constant pain :( I just thought it would really help me to talk to other people my age. If you want to be an email buddy then please email me mrstarabrown@aol.com. Thanks for listening.

tara

[ICNJess]

Hi Tara,

I'm 22 and was diagnosed 2 years ago after many years of struggling with IC. There are a few of us around here. It is rough to be this young with IC...kinda not fair!! You can drop me a PM if you'd like to chat sometime. :grouphug:

Hugs,
Jess

[Dixiefireball]

tara,
I was dx when i was 26 years old i turned 30 in oct. my uro said i had it for many many years before he found it.

the sad part about I.C is if people don't live with it they don't understand it no matter how much they say they do.
Even those doctor out there who study it really don't know how much pain we are in unless they have it.
My doctor is great he trys to keep me out of pain, but really I don't think he knows how much i suffer time to time.
hope things get better for you soon
remember we care!
sending you hugs and prayers
Rhonda

[Flarin-up Vicky]

Hi Daisi24! I'm only 20,just turned it this past december.I've had ic since I was 17,but I wasn't diagnosed until this past july. I totally understand you, I don't have any friends just a boyfriend. I was going to cosmetology school and the new friends I made (when I told them about my condition)just could not grasp the huge negative impact that this condition has taken on my life. It felt like I was on another planet!! One girl I knew(when I told her I was deppressed)said with a stupid look on her face, "Deppressed? Deppressed from what?" I felt like slapping her!! I get pretty lonely and sad often but I try to stay as cheerful as I can, It's soo hard though!!! I'm here if you ever need someone to talk to. About your marriage, I'm sorry to hear that, but as the saying goes "everything happens for a reason". I truly believe that even if it's a negative thing that happens.Ic has helped me appreciate the little thing I took for granted. My e-mail is mizzpurtee@yahoomail.com.Take care sweety!!

[Sherry5]

I am 28, but I think I have had it for a while. I am just glad that we live in a day and age where IC is recognized and treated. I feel lucky that it didn't take me twenty years and ten doctors to find out what was wrong with me. I just hope it will be even more well known soon.

[desolationangel]

I'm 20 and my symptoms actually started a week before this past Halloween. I do often feel like I've been given the short end of the stick, not just for getting IC but for getting it at say, age 20, the prime of my life, rather than in my 40's. I'd give anything to be able to put it off another 20 years or so.

[Julie B]

There are many people here in their 20's!

Hi all! If you haven't already, check out the Twenty Something Board (http://www.ic-network.com/forum/forumdisplay.php?f=115)! Also, check the College Board (http://www.ic-network.com/forum/forumdisplay.php?f=65) if you are still in school.


Hugs.........stay safe and warm everyone in the midwest and east coast!

[Alexa]

Hi daisi! Those of us in our 20s are around here! :)

I'm 28 and was diagnosed with IC at age 20, although I had the symptoms for years before. Like Julie suggested, drop by the 20-somethings chat some time!

take care :grouphug:

[Katrina]

Lots of people in their 20's have IC!!!!!!!!!!!!!!!!! 28 here!

[rhea]

I was diagnosed at 22..but have had problems my whole life (37 now). Started getting worse after my second child at 20. The positive thing about being diagnosed now is sites like this. People to talk to about what you are going through and how you are feeling. When I was diagnosed there wasnt the internet (god that makes me sound so old) and I remember going to that place called the library and checking out books. Going home, sitting on my bed and reading all I could and then just crying when I learned it doesn't go away..The best thing I learned was find a support group. I really helps to talk to peeps who understand... :grouphug:

[~*~Christine~*~]

I was diagnosed with IC when I was 16 and I'm now almost 21. There is a Live Journal where a lot of the young people with IC discuss topics, here's the link http://www.livejournal.com/community/i_cystitis/
And if it turns out that you do have IC life will get a little better because there are treatments for it : )

[sweetpea2555]

:grouphug: Hi! I am 27 years old and I found out I have IC just a few months ago. I understand what it is like to be in constant pain. We can talk sometime. It kinda feels like my life is on hold and in the back of my mind, I have to get things done while I'm young, like kids and finishing school ect...
It is so very frusterating at times. I'm sure alot of icer's our age feel this way and we just have to remember, we have our whole lives ahead of us and it will get better. Thank God for this group, it helps keep our spirits up when we do get down. Here is one more BIG hug :grouphug: and another for all of you reading this who need one :grouphug:

[stacey79]

Hey, there. There are many of us who are in our 20s. I am 25. I first was diagnosed when I was 13. THere wasn't an Internet then that I could get on and I felt very alone and scared. I actually had a sort of remission for a few years then had a major recurrance just over two and half years ago when I was finishing grad school. Like many of us, I have struggled with being this age and dealing with this. My entire life I had been in school, but once I got out, then I had to deal with this disease instead of going to work like I had planned. However, now I'm actually glad. It's given me a chance to get my free-lance career started, which is something I wanted to do eventually anyway. IC still stinks, but I am starting to see some positives that have come from it. :)

I hope you feel better soon. YOu are welcome to e-mail or PM me any time. REmember, we are all here for you! :grouphug: :grouphug: :grouphug:

[ktrncl]

I'am 28 I believe I had IC in my early 20 but, wasn't dignosed with it until recently also I had a husband who was thinking it was all in my head I mean the pain and all until I really got sick some 4 years ago and he found out how serious my pain was . Not only do I have IC but found out 4 years ago that I ONLY HAVE ONE FUNCTIONING KIDNEY and when I finally found out I had IC that was causing so much pain I also found I had an over active bladder and just went through 1st stage inner stim last week I know how it feels to be depressed or no one to understand you I have been there for so many years and without some supportive friends and god I dont think I would have gotten this far . So wanted to let you know your not alone even though we look normal on the outside doesn't mean we don't have real pain noone knows unless you have this awful disease. But, its not the end of the world.

[hazellin31]

Hey--I'm 23 and have been dealing with IC for the past 5 years. I know how frustrating it can be. I find myself getting down about it once and awhile, and usually when that happens, I come on here and just read and read and read. The more I know, the better I feel. The more I know about the diet, about the over the counter stuff, about the meds, treatment options, etc., the more empowered I feel. While I'm not feeling as good as I want to at this point, I am not giving up. Just 2 days ago, I went to a new uro who knew a thing or two about IC and I had to ask him to write me a prescription for Elmiron. My point is, be proactive! This way you can speed up the process of feeling better and even suggest a thing or two to your doctor.

Don't give up!!! It will get better. It's a process of trial and error I feel. You're the one who knows your body the best so keep trying new things! If you ever want to talk, email me at riccobo2@tcnj.edu. I'd love to chat.

Best wishes hun,

Lin

[IcyAngel22]

Lin-
I'm 23 also. I found out I had IC in May 03. I've done almost every treatment and I found botox which helps alot. I'm allgeric to elmiron so if it doesn't help know there are other options. It took probably about 10 years to find out what was wrong with me.I'm in college and I'm out of state so it is hard. Hang in there.I hope elmiron works for you.
Kristin

[Maribeth-rn]

Tara,
I can totally sympathize with you. I got divorced from a completely nonsupportive man ( and his family) at 23. I was diagnosed at 24 with IC. Although that was an extremely hard time in my life. I have been able to find good out of it. I am almost 27 and recently gor married to the most supportive person I have ever met. He and his family have been wonderful! I have also changed my career because of the difficulties I was having with a nonsupportive boss and assistant. Things are still rough, but I am not as depressed as I once was. If you ever want to chat, you can email me at maribeth_brownctrs@yahoo.com I had some difficulties tyring to use the buddy list.

Beth

[watergal]

Hi Everyone,
I am 21 and have been struggling with IC for the last 4 years. after dieting, multiple medications, and many surgeries, nothing has seemed to help. i really never knew much about IC, but today i got online and found this site, and i have never felt better(mentaly). It is so hard being so young, and not being able to live life to its fullest, but i have found comfort here, and hope of maybe getting over my lonelyness. i too feel better reading about it, and finding new things i didnt know. i hope to teach my doctor a thing or two...

[stacey79]

Hi and :welcome:, watergal! You will find some great information on this site and some great support on these boards. It has been a wonderful site for me in realizing that I am not alone and IC doesn't mean the end of life. I hope you feel better soon! :kissing:

[ldgb4]

hello I am 25 and I was diagnosed just a few weeks ago I completely understand how you feel I don't think anyone that doesn't have IC is that supportive because they don't know what it is like to live with it. If you need to chat ldgb4@yahoo.com

I hope you feel better soon
Lisa

[Sarojini]

I was diagnosed when I was 29... about 1 month before I turned 30. But I had been suffering from symptoms for a few years before that....

[JMichele]

Hi...I'm 25...and also get down and feel alone at times. It is frustrating and overwhelming at times. I have heard that IC doesn't progress but found this to be untrue when I looked at pictures of my bladder last week and compared them to the ones 2 years ago when I first got diagnosed. It makes me nervous about the future (having kids, etc.). I feel like I almost have to fast forward plans. It's helpful to know there are others my age who are experiencing the same things...b/c unless you have it you really don't fully get it. PM me anytime, it would be nice to share experiences and thoughts. I'll have to visit the 20 something board; I haven't met anyone my age on here yet.

[IC&Fibro]

Hi I was around your age when I was finally diagnosed. I am 31 now and will turn 32 on the 27th of this month. I know how hard it is at that age. I am still going through it. It is important to find someone to talk to. It is hard for some friends to understand this disease. I still have that problem. Let me know if you want to chat.

[Mary-Ann]

Hey there,

I haven't been to the board in a while... I guess when you start to feel better you kinda don't want to be reminded of certain things. But I hope you are all doing well. HUGZ. I am 23, just about 24.. bday soon.. :) I have had IC since i was 18. I have had a lovely remission that was almost a year long, then it got really bad after that, and i've been taking elmiron for over 3 years now i would say. I think its the only reason Ive been feeling better. Lately Ive been missing dosages though. I hope it doesnt come back and bite me in the ass... I usually take 4 pills a day and lately ive been only taking 2. I did this before and the spasms and urgency came back. But its just so freakin expensive.... At least I have some pretty great parents:) I wish everyone did. Here is my email if you wanna get in contact with me. Im on msn as well.
big_girl_18@hotmail.com, It's always nice to chat with someone who knows what you are going through and share ideas! Take Care everyone, you are in my thoughts.


Mary-Ann

[massagedoula]

I'm 24 and I will be 25 on Saturday. My IC symptoms just started 2 weeks ago after a yearly trip to the gynecologist and getting a pap smear and pelvic exam. I never even heard of IC until I woke up from a nap between classes and felt like I had the worst bladder infection ever...now I have lived with the pain and frequency for 2 weeks. At first I thought it would go away, but it is not getting better. I have gone back to the gyno (not that much help--though they were the ones who told me about IC) and to the ER and 2 walk in clinics. All urine tests were negative for infection but showed a trace of blood...sounds familiar to anyone? Now I have been going to Physical Therapy for a week and also to an acupuntcurist, and drinking marrchmallow tea. My urologist appointment is on March 10th, but I am scared to get any invasive exams because I dont want this to get worse...my interview for the midwifery school that I have wanted to go to for the last 3 years is a few days after my uro appt. So I dont want to get a cysto or anything, I NEED to be able to go to my interview, I've worked for years to get this far...

Yes, I'm worried about my future, will I be able to make it through school? What about having children? Will I be in pain forever?

[Vicci]

Hi;
I'm 40, been dealing with !C for 19 years, and I feel your pain! Believe me, things have come along way. I was very isolated when I was in my twenty's as no one knew what IC was and my pain was never understood. The odd thing is not a lot has changed for me personally, my family and friends still don't think I'm trying quite hard enough to (Cure it), and I still feel isolated, but I have resources, and people to chat with who understand. That is a great comfort. Good luck!

[msfunlady]

Hi
I am 23 and was diagnosed this past week..I totally can relate to what you are going through...My hubby is not very understanding with this whole thing...I have had so maby medical problems in the 5 years we have been married...It seems like as soon as one problem is cured another one pops up...Or gets worse...Sometimes I think he thinks I am making it up...:-(

[anxious one]

Hi there :) I'm 25, was diagnosed at 24 although the IC hit just prior to my 23rd bday. There are lots of us here and we can all totally relate to your anger and fear.
:grouphug: :grouphug: :grouphug:
Sara

[draia512]

Hi, I'm 25 (turing 26 in May) and I've recently been diagnosed with IC. I definitely agree with a lot of the things you guys said. Like how it's hard when your friends, even family don't understand what you are going through. And I really agree with "Flarin-up Vicky" that having IC helps you to not take things for granted in your life. My symptoms kind of came out of no where and it caught me by surprise. I wasn't one of those who had problems my whole life. I'd had a few UTIs throughout my adulthood but nothing too serious. So I definitely go through periods of "What on earth happened to me???" and I think how it is so unfair that I had to get this at a young age when life is just starting for me. Anyway, it's good to know that you are not alone. My e-mail address is Draia512@aol.com if anyone would like to chat.

[DawnsRuby19]

Hey, I was diagnosed right after I turned 19 and I am almost 21 now. It was really hard for me. I had to take a medical leave from college and quit my job. I got really depressed about it. But after talking with people, and getting more and better help I am slowly but surely getting my life back together. It helps that I have a very understanding and loving boyfriend. He has been by myside for every treatment and hydrodistentions. He actually scouts out restrooms for me in a area before he brings me there. So that helps too with the anxiety of going to new places. Hang in there!
-Crystal

[gwynnie]

hi i am 24 too and i have it for 3 yrs... 24/7 pain, less than 1.5 hrs of sleep at a go.. frustrating and terible depression..

[XoChelsey03Xo]

Hi Tara

I have IC and I just turned 20 April 17th. I was diagnosed with IC at the age of 19, but I believe I've lived with it since I was 13. I understand how scary it is. E-mail me or IM me and we can talk more. On March 28th I had an interstim put in that has really helped me out a lot.

Take care,
Chelsey

P.S. I tried to e-mail you and it won't let me send it.

[MelanieJean]

Tara,

I'm 23 now and was daignosed with IC when I was 19. It is definately harder to live a "normal" life with IC. I know it has effected every aspect of my life. If you EVER need anything at all, just let me know. I'm more than happy to share my experiences with you. We're all a family here and we want you to be able to share with us. I know it's so difficult to go through a life changing experience without anyone that knows what you're going through. Please let us help you through. With love,

Mel

[southerngirl]

Hey! I just turned 25 in January. I've had frequency my entire life and been suffering with pain since I was 18. I've known since about 2003-2004 that I have IC and have only recently found a doctor that is trying to help (a pain clinic). I know what it is like to be young and have IC. I had to leave college at the the end of my junior year -I took a medical withdrawl. And I haven't been able to go back yet. I also used to love hanging out with friends, going to clubs, dancing, etc.... that I can't do anymore. I also feel like I have had to put my life on hold. I feel like I may never get to realize all my dreams. I also want to have kids, but with so much pain right now and so much medicine I just don't know when to do it. I know what it's like to have trouble finding support. As much as my family loves me no one can really understand what you're going through unless they have IC (which I wouldn't wish on my worst enemy!) My family wants me to just get up and go and ignore it sometimes and I'm like I can't do that! My husband and I have been married almost 4 years in May, but I'm not sure if we will be staying together or not anymore. He has always been supportive and always takes care of me, but he is starting to become bothered by lots of things. Like my lack of sponteneity, the lack of sex, and other things. So, I'm not sure right now about that. He is still really great about being there for me and we are trying to work through our problems. He has trouble with my lack of sex drive and I've tried to explain to him that if he hurt everytime he had sex, you eventually don't really want it anymore. Sex=pain for me.
Anyway, sorry I got off on a tanget. Anyway, it is nice to know that there are others in their 20's. I hear so often that it is an older ladies disease- which made me feel odd and lonely for awhile. This network is a great place though. I remember when I first joined and was overwhelmed with the support. It is a wonderful place regardless of age.
Thanks everyone. Anyone feel free to message me anytime. And to the person who started this thread (Daisi24) I would love to have an email buddy, just message me on here if you would like to keep in contact.

[Julieee]

Hello... I am 28 with IC, diagnosed when I was 23. It was a shock because I hadn't heard of it before. I think this is a condition that affects women (and men) at any age. You are not alone!!

[Imustpee]

I did! 20 + years ago... :)

[JENNYJ77]

Hi Tara,

I am 27 and just recently told I have IC but I truely have had problems since high school (around 16 or so). Hang in there - if you need to talk please feel free to contact me.

Jen

[sdel803]

i was diagnosed with ic at 31 although i am not 20 i know how you feel. I want to have a baby and it is hard when you are stressed out all of the time because of IC. It really puts such a depression cloud over your life i wish i could have had my kids first i wish it would have waited another ten years. I am here if you want to talk i need to talk to people who have this because honestly nobody understands except the people who have it. My email is Sdel803@aol.com. Hope to hear from you soon. Shari

[Andrew_J]

I also developed IC early, when I was 18 or 19. Definitely had symptoms by 19. By 21 I had a raging case.

Back in the early 90s, few doctors, even uros, had heard of IC. Given that they could find no "cause" with the usual tests, the intense pain I suffered from was dismissed and I know I was put on the "Junkie List" after a while. I'd be given a script for a few Vicodin or Tylenol 3s--utterly useless!--and sent away.

Starting in the mid-90s, the medical profession started taking pain treatment much more seriously and lost much of their fear of the DEA when prescribing strong pain killers. Uros have also become much more familair with it. Strange as it sounds, you're lucky to have it now rather than when I was in my early twenties (90-94). If you can get a diagnosis, and you have insurance, you're almost certain to get treatment (even if its just painkillers). It's so much different than it used to be.

I understand the deep depression that IC can bring on, esp, at first, when you don't understand what's suddenly going wrong with your body. Why you're suddenly in that bathroom, twenty times a day. I had boss, kindly meant, but painful none-the-less, joke that "you pee more than a pregnant woman." I took the wrong path and dove even further into abuse of various things that I had before. Though the docs have all dismissed it, years of deep self-indulgence in sex, drugs and booze certainly couldn't have helped my condition. Don't be tempted to think that path offers any solace. It doesn't. I know face the prospect of lecturing my child about NOT doing the very things I did with such relish as a teen and twenty-something.

Though I'm 34 now, I understand all to well living with IC in your 20s.

While your friends are partying, dating, chasing each other, we spend our time making sure there's a bathroom available. After a while, you don't even realize you're doing it. You just automatically scan a room to find the location of the bathroom, so you can slip away to it without having to call attention to yourself.

I've been very fortunate in my friends and in both of my wives. Though my first marriage ended in disaster, my present wife is far more understanding than I could imagine, let alone deserve.

I really feel for those peope who are alone with this ********* disease. The love of a good woman or man can make this terrible curse so much easier.

My real advice would be to perservere. If you find you can't, I understand that. I'm on SS disability. While my ex is now a lawyer and many of my friends and acquaintances my age are making lives for themselves. I know what it's like to be stuck in neutral.

If you can fight through the pain, urinary symptoms, depression and other diseases that seem to accompany it like Pestilence and War accompany Death, DO IT.

Get the degree of the vocation skills that you need. Work as long as you can, saving as much as you can. Try to get the best private disability policy you can BEFORE you have an official diagnosis.

If IC does end up sidelining you in your early 30s, like me, at least you'll be far better prepared than I was. And far less dependent on others.

I made so many wrong choices :headbang: during a four year mild remission (time when I could have gotten the education my ex did), that when the remission ended and IC came back like Glenn Close in Fatal Attraction I had nothing to fall back on except my present wife (I can only thank God for bringing her into my life and her love and committment for staying with me through so much heartache and difficulty) and eventually social security.

Were it not for wife, I'd be living with my parents--or worse. But even though my life is jammed in neutral right now, I've been given two wonderous gifts: my wife and the daughter she presented to me nearly six years ago.

Do what you can while you can. Otherwise you may find yourself like me: loved, taken care of, with a support network that I see so many lack.

But those things, as wonderful as they are, can't take the sting out of the fact :cussing: that I'm going to be 35 in a few months and I have almost no accomplishments to my name. And there are days when that hurts far worse than the most awful IC day I've ever had.

To quote Dylan Thomas:

Rage, rage against the dying of the light...
Do not go gentle into that good night...

[babykahuna1]

Hi I'm 24 And I Have Had Ic Only 9 Months. It's Hard Being Young And Having This. My Family Had A Hard Time Understanding Ic At First But I Think They Understand It Better Now. Good Luck To All Of You!

[mick]

Sorry to hear that IC has gotten you down and depressed. I was diagnosed with IC this last year (I am now 37) but I had been incorrectly diagnosed with chronic prostate problems since I was in my early 20s. It took alost 15 years for me to find the right doctor that could tell me about IC and how to deal with the conditions. Unfortunately, I had to endure the ending of several emotional relationships because my girlfreinds just didn't understand my condition (how could they understand what I couldn't myself understand until this year.) The positive I see is that you are getting treatment at a young age and this has the best chance for you to be able improve your life for the future. Having IC and its chronic problems has actually helped me to become gratefull of things I used to take for granted.

Hope things improve soon.

mick

[babygirl694]

I am 18.. almost 19.. not quite in my 20's yet.. but i guess close enough. I'm sorry that you are hurting and confused and feel alone. I feel that way alot. I've had the symptoms since i was a little girl.. 7 or 8. Its all i've ever really known.. urgency, frequency, hurting, burning.. all that. I went from doctor to doctor and didnt get diagnosed with it until i was 17. My 2 year anniversary is coming up in september. =( It will get better though. Always remember that we here for you no matter what. We know what you are going through.. =)
Lots of love and hugs!