Hopeless

[amyw507]

I'm 24 and have been experiencing symptoms for a few months and i'm so miserable. My symptoms are frequency and painful spasms. I never have burning when I urinate. It all started with 3 UTIs in a row that went away, but the symptoms never did. I also changed my birth control, and this seemed to spark all of my symptoms. I have since been off of that birth control, but I have not been feeling better. My urologist thinks I have irritation from the 3 UTIs and he gave me a low dose of Macrobid for a month. He absolutly does not think I have IC. But i'm not so sure, I just feel like something else is wrong. My uro/gyno thinks that I have may have IC and wants to do testing. I'm just confused and not sure what to do.

I don't know how I am going to be able to deal with this for the rest of my life. There are some days when I am able to look on the bright side and keep my head up, but lately I have been so down. I am isolating everyone, including my very supportive boyfriend. How are the rest of you able to cope with this? I could really use some suggestions.

Thanks,
Amy

[robynmb2006]

Hi Amy,

I'm also fairly new to the network but have learned so much in the short time I've been here. I was diagnosed with IC about a month ago.

I rarely have burning either, not for awhile at least. Mine is all pain and very hard to handle. You asked how we're able to cope. I thankfully have a VERY supportive husband. He really listens to me and supports me and he's trying to understand IC. Thankfully I don't work, I'm a stay at home mom. But this sure doesn't help with the pain.

I would suggest doing the testing your uro/gyno recommends. Your uro may not be as familiar with IC. I'm actually trying to find a uro/gyno so I can just have one doctor.

I hope you find out what's going on and I hope your pain subsides!

Robyn

[cmclien]

Amy,
Sorry you're feeling so hopeless right now! Part of it might be because you don't know what you have and not knowing is almost worse leaving you in a state of flux. 3 UTI's can damage your bladder lining too and it can take months to heal. Following the diet, taking some medications (have you been given any?) will usually help. What tests does your UG want to do? Maybe having a definitive diagnosis will help you move forward with treatments and getting better. Most of us do find treatments and have symptom improvement between diet and medicines. I know you're not alone, so many of us started out with UTI's before IC and for some reason our bladder linings didn't heal, wish someone would figure out why! I think best to find out so that you know where you're at either way.

There are medicines for frequency and painful spasms. I know before I was put on oab meds I would be walking through the grocery store or somewhere and feel like my bladder got kicked, it was awful and I know how you feel. You won't stay in this same place forever, thats what you have to remember, how you feel today won't be how you feel in a month or 6 months or a year.

Try and let others comfort and help you. I know when you're in pain sometimes we want to isolate ourselves but try and take advantage of the help you're given and not withdraw from others.

[asuka_pengasu]

we're close to the same age and I know exactley how you feel. Some days I just want to lay in my bed and not even look at anyone. I have a definate diagnosis of IC and our symptoms sound exactley the same. I rarely have pain when i urinate but I almost always have cramping and have to pee ALL THE TIME. Maybe we can connect over this cause it SUCKS and no one gets it and i would love to have someone to talk to about it who isnt like 60. email me sometime [email protected]

[cmclien]

People of all ages get IC, even children, not just 60 year olds.

[Little Sunshine]

Hi Amy, I am so sorry for what you are going through...and sadly, I can relate. I am 32 years old and have had 3 UTI's in less than 8 months. After this past one hanging around for 2 months on antibiotics and me insisting that something else was wrong....someone finally listened to me and didn't just write me off as crazy. My urologist was hoping for kidney stones as those would have been fairly easy to treat. Alas, I was diagnosed with IC last Friday. I urge you to listen to your body and if it isn't responding to antibiotics, to get the tests that you Dr. reccomends. This may be a way to ensure there isn't any further damage done if something else is indeed wrong. When my Dr. reccomended me getting tested, I thought "What are the chances that I really have this IC thing?" The answer would be pretty good I guess. I too am struggling with the same symptoms you are. I have had to drop out of school because I got too far behind and am very thankful I have my dogs to get me out of bed in the morning. I do have a good support network. But it's hard when they don't understand. How could they? Please know that you're not alone. Take advantage of any opportunity you can to get your mind off of stuff...even if you just make small strides. Please let me know if you come up with any creative coping mechanisms, as I am searching for some of my own. I wish you the best of luck in getting the answers that you deserve.

[ICNDonna]

It can take a while to find which treatment options work best in any individual instance, but most of us do get to the point where we feel better.

Sending warm healing thoughts,
Donna

[asuka_pengasu]

I know, but in my experience so far, it has been hard to find anyone who isn't older than I am to connect with over this. Most people my age just have a reaction of "oh just take some medicine it can't be that bad." It's incredibly frustrating

[amyw507]

Thanks for all of the kind words. I just want my old life back, but I don't think that's going to happen. I know I will get out of this phase of feeling sorry for myself when I know exactly what is going on. I'm supposed to get a potassium sensitivity test next Monday and a cystoscopy on April 12, but i'm so nervous they will just make me more irritated.

[flowerangela]

amy im 24 also and was just diagnosed in feb after a year of recurrent utis and then one final uti that i had to be hospitalized for with iv antibiotics.it went away but the pain stayed afterwards.i know exactly the feelings you are going through being unsure of whats wrong with you..and hopeless and i feel that way sometimes also.if you do get the diagnosis i would suggest getting some counseling from a counselor in your area who deals with people w/ chronic pain and maybe even ic.it has helped me tremendously.you go thru a grieving process for your old life when you first hear the words incureable and you have to follow a special diet,etc...its only a month and a half into my diagnosis and i am starting to feel like i am getting some parts of the old me back.you are still you even with ic if thats even what you have.none of us asked for this and dont blame yourself..thats what i do alot.pm me anytime.

[sailawaygrl]

Asuka,

I am SURE you meant no harm at all but many of us are far from 60 and those that are there or beyond were your age at one time too. While it is good to talk to someone your own age about what you are going through, don't discount the advice and help you can get from those that are older than you. Many have had IC for a long time and have had to deal with it all through the various stages of life. That can be a great benefit to you, me and other's as well.

I hope you find what some help that let's you get back to doing what you love in life.

Sandra

[cmclien]

Pst

Thanks for all of the kind words. I just want my old life back, but I don't think that's going to happen. I know I will get out of this phase of feeling sorry for myself when I know exactly what is going on. I'm supposed to get a potassium sensitivity test next Monday and a cystoscopy on April 12, but i'm so nervous they will just make me more irritated.

Just to let you know I don't think they recommend the PST test at all anymore. That being said lots of people here have had them and if your doctor wants to do it just make sure they tell you before hand that they will drain it out via the catheter (not you peeing it out or it will burn your urethra) do a rescue instillation immediately to soothe your bladder.

It is positive if you feel any level of pain and discomfort. I think there are people here who have had the PST and can give you good advice on it. I'd recommend starting another thread about it so you are prepared for it.

[ginaaa22]

Thanks for all of the kind words. I just want my old life back, but I don't think that's going to happen. I know I will get out of this phase of feeling sorry for myself when I know exactly what is going on. I'm supposed to get a potassium sensitivity test next Monday and a cystoscopy on April 12, but i'm so nervous they will just make me more irritated.

I know exactly how you feel. Dont feel alone. I'm only 20 and have been suffering for 5 years. I have had to make a lot of adjustments in my life to make myself feel better. Dont give up. Hopefully one day there will be a cure

I had the PST done and it wasn't too bad for me. I did have a lot of discomfort when it was instilled. I did have a flare for a couple of days but started on instills the next week. They helped temporarily (the day I got them) By the next day I was back to my old self, peeing all the time, pain. I also had a cysto w/ hydro and that wasn't as bad. I did have a HORRIBLE flare for the first 2 weeks afterwards but now I'm frequency is getting better along with my pain. The first 2 weeks after surgery I could barely get out of bed, move, or do anything without pain meds. It subsided and now I'm feeling the best I've felt in years. if you need to talk you can add me on facebook or pm on here

[bshphar]

I have never had burning when I go to the bathroom except after my cystoscopy of course. I have been asking by primary dr and my gyno to check my urine for a year because I felt like something was going on and every time they would say "it's clear" . It took me a long time to get to this point and I feel your pain. Hang in there and lean on people for support. I'm new too and feel so alone with this. I love to eat and drink certain things and that is really hard for me to follow the diet. Good luck.

[meResque]

I also had the PST done, and it wasn't bad at all. It definitely hurt when the potassium was instilled, and I begged my doctor to remove the catheter... he obviously didn't, as he needed to instill the rescue instillation. He instilled it, and the pain subsided to a dull ache that was gone about 5 minutes later. I did not have any lasting pain from it, and I loved having a diagnosis so quickly. I would choose it again if faced with that decision.