so depressed, and not being able to enjoy my last teenage year...

[k8lyn15]

:help: Hi all,
I'm barely 19, and I've been experiencing a lot of the symptoms of IC. I've been to my urologist several times, and I'm currently being tried for a UTI. I'm positive its not a UTI, and that taking the antibiotics is only prolonging my depression of not getting help. I was on Detrol LA for a while, but was experiencing horrible headaches, so I stopped treatment. After I finish the antibiotics for the UTI, my doctor prescribed me Ditropan to try and ease the frequency. She told me that I'm probably going to get hydrodistention (spelling?). I've been so depressed lately about this. I've stopped drinking liquids that much to try and curb the frequency (against everyones warnings). I am in college and I live in a dorm room, and i sit up an night, just waiting for the next time i have to run to the bathroom. I don't sleep anymore. I come home on a weekends because its easier for me to deal with it with it when I have privacy. (Although when I'm alone it usually includes crying, a ton). I have a boyfriend (of 2 years), and I constantly think about how much this situation has hindered our relationship. I stress out over stupid things, like going out to a party, and not being able to enjoy myself because I'm afraid of having to use the bathroom. I get so upset thinking about how much I'm missing out on. I can't enjoy my college experience! I can't enjoy my last teenage year because I'm constantly worrying and depressed. My parents and my boyfriend say they understand, but they tell me to get over it and just deal with it. Sometimes I feel so alone, like no one understands how much this is ruining my life. I was just looking for other people's experiences, and how they dealt with the frequency (sometimes I go 15 times in 4 hours!). And I guess I was also looking for a place to vent, where other people knew how I felt. Thanks so much for listening....

[Jean12]

One of the reasons we're here is to give each other a place to vent. I can understand how much this is ruining your life right now. Having the cysto with hydrodistention is usually the way most doctors diagnose IC. Once you have a diagnosis it will be easier to treat. Many of us have found the anti-depressants and the anti-seizure drug Neurontin help a lot with the pain. The class of drugs that include Ditropan, Detrol and Sanctura can have some side effects but sometimes they go away after a couple weeks of treatment so give it time if you can. Have you looked at the patient handbook yet? http://www.ic-network.com/handbook/ It has some wonderful information. Many ICers find that diet is a huge factor in how bad their symptoms are, take a look at the IC no no foods and see if you can't start an elimination diet. I know how much the constant urge to go can interfere with you life and cause hesitation about going anywhere or doing anything. During my worst flares I was going 70-75 times a day. I cried because I just couldn't stand it anymore. I hope that you are able to find some relief soon. Come and vent whenever the need arises.

Jean

[rhea]

K8lyn15-I too started experiencing IC in my late teens (37 now) I had my youngest child at 19, was married and going to college so I understand how you feel. I am also a newbie to this wonderful site..and since joining earlier this month I have rambled and vented so much I am sure everyone is tired of it..but anyways vent away and read others stories and thoughts, through our "experience" you might find some useful hints and helps. Then one thing you will hear over and over and over is IC-DIET. Very important!! Keep venting too..makes you feel lots better. Big hug and I hope you are feeling better soon.

[kelly McC]

Hello and welcome,
The handbook has alot of information. I am sorry and hope you can get some answers soon. Have you tried the diet it can help there is information about it in the handbook.
I would talk to your doctor about not being able to sleep /depression and pain. You mentioned your doctor might do a hydro are they going to schedule one? If it is IC and get a diagnose there treatments that can help you.I am wondering have they cultured your urine? Is it positve for uti? Hope you get some answers soon
huggs,
Kelly

[ICNDonna]

Are you scheduled for a hydrodistention? That's usually the way IC is diagnosed. It has another plus --- and that is that for many ICers, this procedure eases symptoms for at least several months.

Sending warm healing thoughts,
Donna

[TexasHoney]

I am so sorry to you may IC at such a young age. My heart goes out to you. I hope you get definitive diagnosed as as soon as possible. If you do have IC I hope you find a treatment that works for you. Feel free to viist these boards anytime you need to vent or ask questions. We all know what you are going through.

Take Care and Best Wishes
TexasHoney

[Flarin-up Vicky]

Hello K8lyn. I have a very strong feeling it's no UTI you have!! The same thing happened to me and I think to a lot of us, I was told for like 2 years it was just a bladder infection!! Well Hello, bladder infections go away, right?! The next time you go see your Dr., you need to tell her you want a cystoscopy(a look of the inside of your bladder with a little camera). I know that sound scary but it's something your'e going to have to do if you want to get better!! I totally know how you feel, I was diagnosed at 19, I just turned 20 like a month ago, so I'm bummed too!! I know this is an awful thing to have but there are worse things out there!! I know how it feels for people to make you feel like it's all in your head, like your from another planet, people really don't make the effort to try and put themselves in your situation!! I've been with my boyfriend for 3 years and he's stuck by me with this because he loves me and cares about me. If your'e having doubts about your boyfiend, I think you should think over what's the best thing for the both of you. I can't sleep at all either, I do the same thing as you do, just lay there until the next time I need to use the restroom, but I also have depression,anxiety,and stress! If you need someone to talk to you can send me a private message or e-mail me at mizzpurtee@yahoomail.com Take care sweety, hope to hear from you!! :grouphug:

[MakinIT]

Boy...I sure feel for you...How miserable. Listen...if there is any advice I can give, and I know you DON'T want to hear it and already know it...drink water..lots of water.I'm sure you are intelligent and know why, but I was really amazed when I really consciously started drinking water and only water (not pop, not coffee, not tea..sports drinks...Just plain ol water..) First, it dilutes your urine. Thereby when you pee, it isn't so acidic so it doesn't hurt so much, I mean hell, you are already up anyway, why go into the bathroom just to sit on the toilet with a spasming bladder thinking it needs to pee when there is no pee? Second, you are giving your bladder a chance to have a nuetral substance in it, so less pain. Eventually, when you get your dx, they will want to do bladder retraining with you. It involves PT and really monotonous work, but if you start now by drinking water and teaching yourself to try and hold it a little longer each time, you may have a head start and again, you are using a nice, healthy, painless liquid. The worst thing I have discovered, is having my bladder spasming like crazy and feeling so badly like I have to go, but there is no liquid. I just cry and cry and cry.

Anyway...good luck...like the note at the top of the board says...most people post when they are having problems. Most of us who post alot have a more severe case, I'd assume. You may be lucky and be able to heal, there are many options out there. I've run out at this point and just tapping my foot, waiting for someone smarter than me with a lab and money to solve this problem. (ha, ha....) Take heart and let us know, It takes a long time to get a dx, get a doc who will treat it correctly and one who will treat pain if you have it. (God willing, you won't have severe pelvic pain. I've been on high levels of morphine for 2 years.)

Good luck and keep asking questions. Research, read, ask...I've found asking specific questions is the best way to go, rather than just rambling..which I do reallllly well.

Tracey

[calmkiwi21]

I definitely know how you feel, I've had IC since I was 13 years old and felt depressed because I couldn't do everything else that all my friends were doing. Like you I also stopped taking fluids and still do only when I go out far places. But I can say that things will get better even though they don't seem like they will now. I ended up finding the right combo of meds to get rid of the pain completely. I still have frequency and urgency a bit but not as bad. I found that after my first hydro even though I had pain for over a week badly I was able to hold a lot more and actually get some nights sleep which hasn't happened lately(still getting up a lot at night). If you want someone to vent to or just to talk, feel free to e-mail me at b4_4badgirl@hotmail.com
I'm always available to listen :)
From
Amy

[Ginny]

I would talk to your doctor about antidepressents to help you deal with this.
I would also talk to him or her about Elavil. It is also an antidepressent but is used in smaller doses to help with pain. I have used it for years so I can get some sleep at night. I take it before bed and my trips to the bathroom are so much less.
Good luck and I hope you feel better soon.

[Lily Chip]

[QUOTE=k8lyn15]:help: Hi all,
I'm barely 19, and I've been experiencing a lot of the symptoms of IC. I've been to my urologist several times, and I'm currently being tried for a UTI. I'm positive its not a UTI, and that taking the antibiotics is only prolonging my depression of not getting help. I was on Detrol LA for a while, but was experiencing horrible headaches, so I stopped treatment. After I finish the antibiotics for the UTI, my doctor prescribed me Ditropan to try and ease the frequency. She told me that I'm probably going to get hydrodistention (spelling?). I've been so depressed lately about this. I've stopped drinking liquids that much to try and curb the frequency (against everyones warnings). I am in college and I live in a dorm room, and i sit up an night, just waiting for the next time i have to run to the bathroom. I don't sleep anymore. I come home on a weekends because its easier for me to deal with it with it when I have privacy. (Although when I'm alone it usually includes crying, a ton). I have a boyfriend (of 2 years), and I constantly think about how much this situation has hindered our relationship. I stress out over stupid things, like going out to a party, and not being able to enjoy myself because I'm afraid of having to use the bathroom. I get so upset thinking about how much I'm missing out on. I can't enjoy my college experience! I can't enjoy my last teenage year because I'm constantly worrying and depressed. My parents and my boyfriend say they understand, but they tell me to get over it and just deal with it. Sometimes I feel so alone, like no one understands how much this is ruining my life. I was just looking for other people's experiences, and how they dealt with the frequency (sometimes I go 15 times in 4 hours!). And I guess I was also looking for a place to vent, where other people knew how I felt. Thanks so much for listening...
Please know that you are not alone--The best advice i can give you is to educated yourself as thoroughly as you can about possible treatments, diet, etc.--try different treatments one at a time so you can see what works for you--it's different for everyone but there are generalities--for example, the IC diet recommendations (it's hard to stick to! but it helps!) pretty much apply to everyone--also, find a urologist/gynecologist who specializes in IC and have the hydrodistention which will tell you if you have pinpoint bleeding/ulceration on your bladder, for your own information--if you're not sleeping, you NEED to take something that will help you sleep--Ambien has worked for me without side effects, although you need to take it every other night instead of every night so that it will continue working--there is a new sleep aid coming out soon that will be approved for long-term use called Lunesta--find a sympathetic knowledgable doctor and get some help in the sleep department--find out by trial and error what you can and can't eat/drink--there is A LOT of new research being done now on IC (finally!) so don't give up hope--the more you stress about it the worse it will get--look into your family's medical history and see if there is a pattern of auto-immune diseases--I am convinced there is a genetic predisposition involved--find out what your bladder capacity is--educate yourself and be good to yourself--open up to the people in your life and be honest with them about what you are experiencing--don't hang with people who dismiss your suffering--of course no one who doesn't have IC can really understand & I guess you have to take that into account--but try to surround yourself with compassion and support!

[Lily Chip]

:help: Hi all,
I'm barely 19, and I've been experiencing a lot of the symptoms of IC. I've been to my urologist several times, and I'm currently being tried for a UTI. I'm positive its not a UTI, and that taking the antibiotics is only prolonging my depression of not getting help. I was on Detrol LA for a while, but was experiencing horrible headaches, so I stopped treatment. After I finish the antibiotics for the UTI, my doctor prescribed me Ditropan to try and ease the frequency. She told me that I'm probably going to get hydrodistention (spelling?). I've been so depressed lately about this. I've stopped drinking liquids that much to try and curb the frequency (against everyones warnings). I am in college and I live in a dorm room, and i sit up an night, just waiting for the next time i have to run to the bathroom. I don't sleep anymore. I come home on a weekends because its easier for me to deal with it with it when I have privacy. (Although when I'm alone it usually includes crying, a ton). I have a boyfriend (of 2 years), and I constantly think about how much this situation has hindered our relationship. I stress out over stupid things, like going out to a party, and not being able to enjoy myself because I'm afraid of having to use the bathroom. I get so upset thinking about how much I'm missing out on. I can't enjoy my college experience! I can't enjoy my last teenage year because I'm constantly worrying and depressed. My parents and my boyfriend say they understand, but they tell me to get over it and just deal with it. Sometimes I feel so alone, like no one understands how much this is ruining my life. I was just looking for other people's experiences, and how they dealt with the frequency (sometimes I go 15 times in 4 hours!). And I guess I was also looking for a place to vent, where other people knew how I felt. Thanks so much for listening....
Dear K8lyn--Keep a big paint bucket (white plastic 15 gal) by your bed that is sturdy enough to actually sit on and then just slide your butt out onto it--put the t.p. in a paper bag--after awhile, you will be able to do this without really waking up--in the morning, dump it in the toilet & rinse it out. If your roommate, boyfriend, family member or whoever objects, find someone to be with who will understand