Newly Diagnosed, Still in pain and a little lost

[AmyRace]

Hello, I am 21 years old and for the past two years I have been having what I thought were UTI's, but everytime I would go the doctors would tell me that there was just the smallest trace of blood and cells in my urine and that it could have been from not getting a clean catch, but then they would give me antibiotics and I would feel better within a couple of days and I never thought anything of it. This past week though, the pain and what I thought was a UTI came back with a vengance. I have never been in so much pain as I was in this morning, I felt as if someone was trying to pull out my insides or that they had been rubbed on sand paper all night long. If i tried to move, I just wanted to cry. Thanks to my lovely HMO i had problems getting an appointment with my GYN but since he had seen me before for UTI's he referred me to the Urologist next door and I was seen immediantly. My urinalyis came back crystal clear, and after an exam my doctor diagnosed me with IC. I am to go back next week after the pain subsides to have the potassium test to confirm and then I am supposed to start on elmiron. It's nice to know that I wasn't crazy because I never enjoyed sex because of the pain or that I wasn't doing something wrong by constantly having what I thought were these infections, but all the foods I like to eat and eat regularly seem to be on the bad side of the diet, so it is going to me a definite lifestyle change :( But it's so nice to know that I am not alone. I just wish it would all go away... lol

[Betsie]

Hi Amy!

I just responded to Jaime, a year older than you...since it takes me forever I would refer you to her thread just above. I would offer the same welcome and the same advice. No you are not alone, and while it won't go away, it will probably get much easier to manage in time. :) :)

[Dixiefireball]

:hi: and :welcome: to the icn family no hon your not alone and there is lots to learn about i.c but with this family you will have the support.
please check out some treatments and the diet at www.ic-network.com/handbook its very handy.
when flareing sometimes drinking eight oz of water and a tsp of baking soda may settle down your bladder or taking a tums try useing prelief before you eat or drink and keep to your diet .
please remember everyone diet is diff. so that is a plus.
sending you hugs and prayers
Rhonda

[theclownster]

I want to add my warm welcome to the ICN. I've found a ton of support and strength by participating in the boards here. Let us know if you have questions and we will do our best to support you. The one good thing about being here is that you never feel alone.

Wishing you better days~
Jennifer

[NonnyJ]

I know how you feel about the pain. But things will get better. I have some things that might help you, such as yoga, meditation and swimming. Just don't think to much about the pain and the disorder.

All my love.

[Katrina]

:hi:Amy :welcome: to the ICN!!!
http://www.ic-network.com/forum/showthread.php?p=90935#post90935 Newbie kit from the oldies to the newbies

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post.
The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

I hope you find this board to be as helpful and supportive as I have. You are never alone! :grouphug:

[ICNDonna]

I'd also like to say :welcome: --- you have come to the right place to learn about IC. It's not the easiest thing in the world to deal with, but with some diet changes and treatment, you hopefully will feel better very soon. I do suggest you put yourself on an IC diet right now, even before you have a definite diagnosis.

Elmiron can take up to six months or longer to be effective so you may want to discuss other treatment options with your urologist when you next have an appointment. The Patient Handbook has information about available treatments.

Sending warm healing thoughts,
Donna

[vm]

:welcome: I don't have much to add --- only that you are on the road to feeling better now. :)

[SharonA]

Hello and :welcome: ... As you can already see by the replies you have received...you are not alone. :)

[Sarojini]

Hello and a big :welcome: to the ICN :)

I agree with Donna... please discuss other treatments you can use in the meantime, as Elmiron takes a minimum of 6 months to become effective in most patients. There are many out there and you can read about them in the Patient Handbook (http://www.ic-network.com/handbook).

I'm sorry you have IC, but like others have said, there are many things you can try to make you feel better -- most of us live very normal lives and feel good most of the time :)

[traceann]

Hello and glad you found this wonderful place of help, support and just all around caring! I know it's been a great help to me! I understand about the diet end of it, my favorite foods all involve tomatoes in one form or another, and that has been a big adjustment!! (mmmm and seriously spicy foods). But really, I do get frustrated sometimes, but most times it's an easy choice for me, I'd rather feel good and be able to do things, and that means watching what I eat. I just love the Diet and IC board, there is a ton of ideas there that I have tried and liked, that alone has been so helpful in navigating the foods aspect of it all, and helps keep it interesting!

Sounds like you are heading in the direction of feeling better and taking steps to achieve that! I was just put on the Elmiron in mid November and I think between that, the ditropan, the vistaril and the diet, I am feeling 100% better than when I was first diagnosed -- not top notch yet, but compared to where I was just a couple of months ago, it's great. I too know the elmiron can take months to see a difference, so I can only hope it's doing it's thing in combo with the other stuff! Keep plugging away and you will find a way a to feel better, I have confidnece in that!!!

Hugs,
Tracey :)

[AmyRace]

I had the potassium test done today, and it confirmed the diagnosis. The test wasn't all that bad, until after the potassium solution was put in the nurse had trouble getting the catheter back in my bladder to drain the solution so I was in pain a little bit longer than i should have been. But they gave me some elmiron and sent me on my way to being better :)

[traceann]

Glad to hear that they have you on the road to feeling better!!! (but sorry about the catheter mishap! OUCH!)

Hugs,
Tracey :)

[Dolci6]

I am also 21 years old with the same symptoms that you have. If you want to talk just send me an email. It's nice to know that I am not the only 20-something with these feelings.