another 20 year old with ic...gotta vent

[Emmy1151]

Hey everyone! It's nice to read i am not alone. when i first started having IC symptoms the doctors kept dismissing it at possible UTI's becasue they thought i was to young to have IC....but after 4 painful months of countless doctors visits i finally convinced them to do a cysto/hydro and i was right! confirmed the IC....and of course the two things that casue the worst flares for me are alcohol and sex. Now i am away at college and i am in a serious relationship and the combination of the two makes these things hard to stay away from . Esspecially since before IC i loved to go out to the bars and have a good time. Luckily my boyfreind is wonderful and totaally understands. and ugh i cannot tell you how annoied i get when older people arel ike well you can have fun without drinking...im like yea i know this but try to put yourself is a 20 year old college students position. esspecailly when me nad all my closest freinds are turning 21 andi just want to go out a party like the rest of them. ugh and then i feel like i will never be able to have sex ever again!!! im still not on ANY medication other then urelle and i really think i need to be....i have an appointment with my uro next week. But anyways sorry i just had to vent!...thanks!

[icgennifer]

Hi Emmy, I'm 27 and was recently diagnosed (November). I know EXACTLY what you're talking about!! My friends like to go out all the time but I never really feel up to it. My boyfriend is a wonderful guy and he has been very understanding and supportive.. just like yours sounds like he is! I think I worry about the sex more than he does.. he has told me his biggest concern is that I feel better, then we'll worry about the intimacy later. he's right WE NEED TO FOCUS ON FEELING BETTER! I am still struggling to find medications that work, but I can tell you, when you become sick you will truly discover who your friends are! I lost a very close friend, but really I know I'm better off without her.. feel free to e-mail me on here.. it sounds like we're in a similiar situation!

[Emmy1151]

Wow it sure is nice to know that someone can relate!!!....and thank goodness for understanding guys!!! Its one of my friends birthdays this weekend and of course everyone is going out...and since its her birthday i kinda feel obligated to...so im just crossing my fingers that i feel up to it! But i hope your doing well!...i have a uro appt. today and hopefully can get on some helpful meds!

[icgennifer]

I feel the same way, I always cross my fingers and hope that I feel up to going out! Sometimes I just need to have a good cry, then I feel more ready to go out..Let us know which meds your doctor puts you on and your progress!!

[petrie86]

Hey girls I'm 22 and totally understand what your going through. I was dxd when i was 18. I had an ex who kept me sick, well i say that because all he did was cause constant fights and kept me stressed. Little did I find out 3 1/2 years later he was cheating on me. Goes to show you who your "real" friends are even living with him he still didnt understand what we go through.
It's going to take time and lots of patience to find the right combination of meds and a few doctors till you get the right one. But That;s what we are all here for, support and there are alot of youngins here on this site who you can vent to. Geez I didnt even get to drink on my 21st birthday!!!! So i know what its like to be around all your friends who party and want you to do the same. Just know its ok to say no, and if your not feeling up to going out, DONT!!!! Better to be home and near a bathroom then running around a bar waiting in line and almost peeing your pants. (done that a few times!)
I'm pretty much back to a normal 22 year olds life right now, thanks to the lady;s on the icn and my uro and meds. So it does take time. But were all willing to help and offer our life experiences to see if it comforts you. :)
If you ever need anything please feel free to pm me! i'm pretty much always on this icn.
sending you hugs

Rach

[icnewlywed]

I forget sometimes that there are others my age with ic. I was diagnosed at 17 and only because my mom also has ic and fought with my doctors to diagnosis me. I am now 24. When I was 17 and receiving my diagnosis I had just started dating this guy. I remember trying to hide my symptoms from him and on more than one occasion lying about why I had to cancel. Eventually I told him the truth and amazingly he became one of my biggest supporters. Now almost 8 years later we are married and talking about starting a family. He has been through my entire ic diagnosis with me, and married me despite its down falls. I think the hardest part of being diagnsised so young is missing out on the intimacy with as a 20-something and a newly wed. My husband and I have had 3 months total of our entire relationship that consisted of a regular sex. He is understanding most of the time in this area, but has been known to also become extremely frustrated. This past week my job asked be to step down to part time because of my frequent absences due to my ic. It was all I could do to keep him from marching up there to tell them how horrible ic has been for me. It was nice to know I had someone in my corner. Recently i've decided with my doctor to have an interstim implant and my husband has attended every visit with me and researched everything he can get his hands on regarding the subject. IC sometimes can ruin relationships, but with the right person I think it can also strengthen it. We can't rely on the same things to bring us close together like going out regularly, or other common newly wed activities, so we have to get creative.... like candle light dinners in the bathroom :lmao: That is just life iwth IC.


Thanks to everyone sharing their story of ic as a 20 something... one of the reasons i read this site often is to remind myself I am not alone.

[snow_melt]

Hey Emmy! I'm chiming in to just to say you're not alone (and to remind myself of the same)! It is SO hard to have IC and be denied some of the best parts of being young... food, sex, going out to drink. I turned 21 a month ago and haven't had even a sip of alcohol since. I have been feeling so much better due to changing my diet and sticking with it (for 4 months) that I can't imagine drinking, although I do miss it at times. My boyfriend is also extremely supportive and wonderful at cheering me up, so I am thankful for that. IC has taken a lot away from me, including friends, but at least having one strong bond keeps me from being isolated.
I hope your uro appointment went well! If you need advice or a place to vent, this is it!

[karis_Kookie]

omg don't worry again no one hear is alone ive just come out of remission with IC...one whole yr of feeling normal yay 4 me!!and now again the demon is back lol!!Anyways you know what im going to try and have a normal life with..Botox injections into the bladder i have finally found a specialist that will do it for me and im only 22 as well...That way us 20 somthings can kinda still enjoy the normal things in life...I'm a bit naughty though since i still drink and have sex etc...Luckily for me my IC is a little bugger it doesnt have many triggers as such whether i drink alcohol or have sex it just rears its ugly head no matter what the occassion..I just worry about my life in the future and whether i will ever find a nice bf or husband that will want to put up with this crap..i mean they all say that they will etc bla bla bla but when it comes down to it who knows....:loco:

[Melgirl200]

Another person just wanting to tell you that your not alone and that man do we ALL understand. I'm 26 and will NEVER forget how being in college was one of the HARDEST things someone with IC can go through. I just remember crying to myself so much and not having anyone to talk to. I had a crazy group of friends and it was so hard to go out and drink and pretend I felt good. I really understand that part. And sometimes it's not just the drinking part that's hard; it's the not wanting to dress all cute because your body hurts like no other and clothes just don't feel right. I wish I had someone to talk to at the time, but this is what I learned.

First, like everyone else is saying, you will find a combo that works for you at some point. Just keep on pushing for it and be patient. Also, after awhile I learned that if you push yourself too hard, you may be worse off. Some nights I had to say no and I pushed for my REAL friends to come over and have a chill night. The stress of working, going to school, studying, carrying out an intimate relationship let alone friendships is very tough...but it's doable. We've all been there and I only wish for you and anyone else out there that you take the time to vent, talk to others, and find a doctor that will listen. I still am going through it now, so I can't pretend it may just stop, but it get's to a point that you feel stronger. There are still nights that I go out in a sweatshirt because I can't get myself to dress 'cute,' or I start to drink and realize it was the worst mistake ever...but you get through it. Trust your friends and your boyfriend to be there for you; give them a chance. Hey, I found out that I love yoga which I do before I go out sometimes to help my bladder/body calm, and I also found out that I'm a great liar when it comes to pretending that my water on the rocks is really vodka on the rocks. People never know the difference (just don't give them a taste). ;)

[itzbezzy]

word. i really know how you feel, truly. i'm 26, was first diagnosed when i was 19 and have had bouts of terrible flares, then remission, then flares all over again ever since. sometimes what was once a trigger (smoke, alcohol) does nothing to make the IC worse, and then sometimes the reverse is true. i used to get along perfectly fine with chocolate, frosted flakes, and elmiron but now it feels like the meds have stopped working and i can't even look at a hershey bar without hurting. :bonk: it's frustrating, especially when we're this young and supposed to be in the so-calld prime of our lives.

by far the hardest is the lack of sex, going out with friends, and enjoying a 'normal' life. i hear you, i really do. but what everyone here says is true: focus on getting better, and not on what you can't do. in time you'll find what works for you and you'll be able to lead a bit more of a normal twenty-something life.

*hugs to all*