I'm 22 and lonely :-(

[Tricia H]

[/IMG]My name is Tricia and I'm 22 and live in Michigan. I was diagnosed with IC in September, even though I have had symptoms for about 10 years. It has been a terrible journey for me because people just don't understand what I'm going through. I dont hang out with friends too much (except for the sweet ones) or date because I got tired of being made fun of and having to deal with the embarrasment of frequently having to use the bathroom and explaining why. I really like going out and having fun, but with people that understand and dont judge me. My wish is to find a guy who understands what I'm going through and accepts me for who I am :pray:

http://i148.photobucket.com/albums/s31/tweek48192/scan0002.jpg
Current Meds:
Elmiron 200mg 2x/day
Ditropan 10mg 2x/day

[humpieumpumkin]

Hey Tricia!

I'm 22 as well, and I DO know what your going through! I started having IC when I was 16. If you have any questions, concerns or just want to chat send me a pm!
Hugs!

Erika:hi:

[SharonA]

:hi: Tricia...

I am so sorry that you are having to deal with IC. It can be so overwhelming. People can be so cruel sometimes. Especially when they don't understand or even want to understand. From your post, it sounds like you do have friends. Cherish them and don't give the others a second thought. They don't deserve you. You are special in your own right. (((Hugs)))

[jena55]

Tricia-

I know exactly what you mean. I am 27 and was just diagnosed this year, however I have been dealing with all of my IC symptoms since I was probably 19. I know what it is like being young and wanting to have fun, but at the same time not wanting people to question why you do the things you do all the time. Dating is no fun because of how self conscious I get... the thing is guys "see" nothing wrong with me, so my behaviors (going to the bathroom so much, not always feeling up to going out etc) just seem weird to them. Plus with friends sometimes it is almost lose-lose. If I go out, sometimes I just dont feel good and suffer thru a long night that should otherwise be fun... or even if I feel good I still have to use the bathroom way more than anyone else. On the other hand, if I stay home often my friends start to wonder why i am isolating myself, or if I just dont want to hangout with them. I find it impossible to explain to everyone that I have IC, and honestly I really dont want the whole world to know. So, I can't say my friends are bad for wondering why i do the things I do, cause most of them truly have no idea. That's just it though- it just feels like no one has any idea!!! Now that I know what it is I have, I am hoping that I can learn what I need to do to get myself in remission so I can start leading a more symptom free life!!!

[ICNJess]

Hi there! I'm 25 and I've been dealing with IC the majority of my life, though it just got diagnosed about 5 years ago. If you need anyone to talk to, drop me a line sometime :)

[Dreamlove15]

Hi. I just wanted to say I know what you mean about people not understanding. I am 23 and was just diagnosed in November. Hang in there, I think it only goes up from here. Feel free to message me. Take care:angel:

[jena55]

Interesting that there really are quite a few of us young ones with this dreaded thing. It is nice to know I am not as alone as I thought. Sometimes I swear I must be the only girl in the world who goes to the dr as much as I do and especially the uro! Seriously, it gets pretty depressing in the uro waiting room surrounded by all older folk. I am sure you guys know what I mean.

Dream- I love the your thought "it only goes up from here". That is a great positive outlook to have!!:)

[Dreamlove15]

Thanks Jena. I can totally relate to going to a URO at 23 and being surrounded my an older crowd. Somethings wrong with the whole picture...I shouldn't be there, but I am. I remember the day I was diagnosed, feeling so hopeless. but each day it seems to get better. The pains still there, but it's slowly sinking in that my life's been changed. I just keep telling myself there's a reason behind it all and I just have to keep putting one foot in front of the other. I can either be in a stand still or do what I need to do...and well im slowly doing it...diet...support from people who truly care(I've let go of the ones that chose to walk away)...meds(going to take some time)...Im what my dr calls.."STEERING MY OWN SHIP"...I just hope that all of you know your not alone...You may enter the DR. alone but you can come home to a world of people who understand what your going through. Thank God for this board! Take care.:angel:

[mimimama]

Ladies~

You are never alone..only a post away from support, friendship and kindness. I know how hard it must be to deal with this in your 20's. I too can relate to going to the URO and thinking..what am I doing here???:loco:
:welcome: to the boards!

[Tricia H]

you guys are great... you have really uplifted my spirits and I see that I am not alone, and that I do have a place to turn when I'm really feeling down... Thank you all for your kind words :)

~*Hugs*~

[born2swim]

I know exactly how you feel! I am 24. I have only had symptoms for just over a year, but it has impacted my social life more than I ever imagined. I'm in med school, so my friends are incredibly understanding, but even they say, "can't you just train your bladder". GRRRR! I can't help it people! They are getting used to the mad dash for the toilet, but it's still hard. It is hard to date and I fear being intimate because of this. I just hope I can get back to feeling normal again. I know that as soon as I can start exercising again, my bladder is getting back to 'normal'... whatever that is.

I noticed that you are only on 2 meds. Have you looked into other meds to help? I don't know what your main symptoms are, but many people need other meds at times (like I take Soma, a muscle relaxant which seems to help).

[BBB]

I am so sorry for all of you that you have this horrible disease. On the bright side you are so fortunate to have a site like the ICN, Doctors that are knowledge or will even say the word IC and new drugs and machines coming on the scene all the time. Just to have a community site would have been great for me.

My IC started in puberty so I have had IC for 30 years. For 20 of those years doctors either thought I was crazy or it had something to do with my IBS, urterus or ovaries. Never did anyone suggest or think it was my bladder or pelvic floor.

Stick together girls and you will be stronger. Here is to you:woohoo:
And...if you need any thing by us older women, feel free to ask! God, I never though I would be the one saying that. I was always the baby!

Take Care girlies,
B

[packardaMSU]

hey! i'm 21 and i live in michigan too! what part of michigan are you in? i was diagnosed in 2005 so i have had some luck with things but have recently had some really bad episodes of flares mixed with infections. i hope you're doing well! you're not alone!

[born2swim]

Scoff... Go Spartans? hehe! Sorry, couldn't resist! I was from Ann Arbor originally, but I live in Florida now. It's nice and warm here! Love it in Florida!

[Tricia H]

"I noticed that you are only on 2 meds. Have you looked into other meds to help? I don't know what your main symptoms are, but many people need other meds at times (like I take Soma, a muscle relaxant which seems to help)."

My doctor didnt tell me about any other types of Meds.. I'm still pretty clueless about all of this, so I was just going by her judgement, and since being on Elmiron 200mg 2x/day and Ditropan 10mg 2x/day for a few months I've only seen a very slight improvement. She seems to like the "wait and see approach" but idk. She has recommended an introstem but I'm scared to even think about it. So I'm just going one day at a time until my next appointment in December :mad:

GO SPARTANS!! (I'm an U of M-Dearborn student, but a spartan fan all the way!!)

[leelee88]

Tricia, what are your symptoms?

[Tricia H]

Well I'm not in any pain, just have pretty bad frequency and urgency. Its quite difficult to figure out which foods are bothering me and which arnt because I'm always the same lol :loco:

[born2swim]

Tricia! Sorry to hear you are a Spartan fan too! haha! I moved to Florida and graduated from University of Florida, so I am a huge gator fan now!

My doctor started with the usual, Elmiron + OAB med + Atarax. When I didn't get much help (and didn't tolerate most OAB meds), they started trying "other meds". They wanted to give Elmiron at least 6 months... I gave it 9 and after enough hair thinning and no improvement, they said stop it. I was tried on Neurontin and Topamax as a "shot in the dark", but it didn't help. Soma was given to me by my internist but my uro doesn't think it will help me. I think it helps a bit, so I am staying on it. He said it would be more applicable for someone that has PFD. I did try Elmiron/lido/bicarb/saline instillations for 3 months (1-2 times/week) and that did nothing. My first uro (before moving to a different city in Florida), said, "We should try medications first, but you will be looking at an Interstim therapy". Well after almost a year on meds and not getting much improvement, we tried Interstim and it didn't work. Then they tried to reposition it, and it didn't work. So, my uro removed it. I had help from a hydrodistention, so I am getting my second one next week. I pray it helps as much if not more than the first time. I know running makes my bladder worse, so I have to give that up. So, we'll see if it helps! My uro said 40% of his IC patients get beneficial results from a hydro, so it showing positive result for the first one, we are hoping this one will help too! Keep your fingers crossed!

Boy... I have tried so many meds. If the hydro doesn't help, my uro said botox or DMSO is something to consider. I want to try Urospaz and see if that helps before I try the other things. I am on Sanctura, but that doesn't seem to do much.

This really sucks! All my friends/classmates know what is going on because I pee so much... but it still sucks!

[Tricia H]

I had a hydro done for the first time in September and it actually made my symptoms worse, but I'm praying that it does wonders for you. :pray:

It's amazing how we all can have the same "condition", but it seems like no two people have the exact same treatment; crazy how that works!

[born2swim]

It is weird... because we have the same disease, same symptoms (urgency/frequency is horrendous), and yet hydro helped me and hurt you. Diet wise... coffee, tea, pop, citrus, and artificial sweeteners (majorly nutrasweet) affect my bladder. Other foods... they don't seem to upset my bladder. Carrots cause a massive increase in urine volume, so that sucks!

Atarax is one med that help a lot of people. It is an antihistamine (like benadryl) and some can only do it at night, while others do it during the day too. I started out on liquid (10mg) at night then added it to the morning. It helped me a bit, but then leveled off and hasn't done much for me since.

Good luck finding what helps you! It's so frustrating to be diagnosed with a "chronic disease" at our age :(

[BAM23]

when i worry about the future (which I do a lot) i just have to keep reminding myself of those who are doing good and older than us...and how the beginning is the worst part. hope you find something that works for you tricia!

[Maddy487]

I just want to say hang in there. I understand how you feel because I'm only 21 and have had IC since i was about 16. I would urge you to be honest with people from the beginning. I know it might be somewhat embarassing but it's out of your control. I'm always very upfront with friends, family, and bf about my bladder issues and they're usually understanding. Don't waste your time with people who aren't. I've been with my bf for almost a year and my bladder symptons have gotten increasingly worse but he is incredibly understanding about it. He's always supportive and doesn't get upset if i need to take a break during sex to pee which is very nice :)...HOnestly you can find good guys out there who will understand it but sometimes you have to explain it...there's nothing to be ashamed of....you are this way for a reason and they should love all of you. My bf always says I love everything about you even your bladder which is very sweet lol.

[angel82]

if you ever want to chat , message me. Dont feel lonely like me, we can give each other hope xx

[SharonA]

angel82...This is an older thread. I checked and Tricia H has not been on the boards since 7/12/08. I hope that means that she found what works for her, is feeling better and no longer needs support. That happens a lot. I hope it happens for you. :)