19 Going On 90!please Help!

[mgojkovich]

:bow: I WAS FIRST DIAGNOSED WITH IC ABOUT 6 MONTHS AGO, ALTHOUGH MY SYMPTOMS HAD BEEN OCCURING FOR MORE THAN 2 YEARS. BECAUSE I WAS ONLY 17 AT THE TIME, DOCTORS AND UROLOGISTS TOLD ME NOTHING WAS WRONG (ALTHOUGH I WAS GOING THROUGH 4 UTI'S A MONTH). EVERYTIME I WOULD GIVE A URINE CULTURE IT WOULD TURN UP NEGATIVE FOR UTI'S. I FOUND A GYNOCOLOGIST WHO RAN EVERY TEST POSSIBLE FOR DISEASES AND THOUGHT IT MIGHT BE ENDOMITRIOSIS. AFTER ALMOST 6 MONTHS OF THAT (STILL BURNING ALL DAY AND NIGHT) ALL TESTS CAME OUT NEGATIVE. WITH EVERY PERIOD IT GOT WORSE. SO SICK I COULDNT GET OUT OF BED. SHE PUT ME ON BIRTH CONTROLL THINKING IT WOULD STOP THE PAIN! BUT IT DIDNT. SO I FINALLY TOOK THINGS INTO MY OWN HANDS, KNOWING THAT MY GUT FEELING OF IC WAS RIGHT. I FOUND A NEW UROLOGIST WHO IS GREAT. WITH IN 5 MINUTES HE HAD DIAGNOSED ME WITH IC. 2 YEARS OF SUFFERING AND 5 MINUTES TO BE DIAGNOSED AND START TREATMENTS. I HAVE BEEN THROUGH DSMO TREATMENTS WHICH HAVE ONLY MADE ME WORSE. NOW I AM ABOUT TO GO THROUGH SOME TYPE OF SURGERY. I HAVE TRIED EVERY PILL FROM ELMIRON TO ELIVIL, VALUIM, PURYDIUM, AND EVERY OTHER THING I AM ALLERGIC TO. I KNOW THAT OXYCONTIN WORKS FOR ME. IT NUMBS ME OUT. BUT EVERYTIME I ASK MY DOCTOR I FEEL LIKE HE THINKS I AM JUST LOOKING FOR A "FIX" BECAUSE I AM SO YOUNG! NO ONE UNDERSTANDS MY PAIN. ITS CONSTANTLY THERE. ALWAYS SEVERE. IM SEVERLY DEPRESSED AND FEEL HOPELESS. I AM JUST SO SICK OF HURTING! I HAVE LOST MY PASSION FOR SEX AND PASSION AND EVEN JUST NORMAL ACTIVITIES (AND IM ONLY 19)! I FEEL LIKE IT WILL NEVER GO AWAY. I WOULD APPRICIATE SOME INPUT AND SUPPORT FROM ANYONE WHO UNDERSTANDS WHAT I AM GOING THROUGH!:help:

[cass2376]

First things first, WELCOME to the best place to chat for us ICers! I am so sorry to hear about how you have been feeling though. My way of getting dx w/ ic sounds simular to yours. What I mean is that no Doc could figure out what I had going on for years too then, wham, I saw a new GYN in the hospital I was in for pain control and about 10 min. later He said, "I am almost positive you have IC!" I saw him a week later and he did the potasium(sp?) sensitivity test and sure enough....IC! It's been 2 years now of meds, treatments, and oh...did I mention....PAIN! :) Here are some experiances I went through and some ideas that might help you:.......
I too did tried the DMSO..... hated it! I suffered through 8 treatments cause I was told that if I toughed it out things would improve by the 6th or 7th one...NOT! I did try Elmiron too and that seemed to make things bearable. I also did bladder instillations for about a year that helped a lot. It was 3x a week. The meds put into this bladder "cocktail" was one Elmiron pill (the powder med inside them), heprin, sterile water, and of coarse... Lidocaine (sp?) It helped numb my bladder for the day so that was always nice. Have you ever tried this? Did the Elmiron help at all? Also, have you tried the IC diet. It can be found on this website, just look around the main page and you can find the info on it. Staying away from the "trigger" foods might help you! Some have great improvement from it. I also read that you have tried other meds w/ no luck. Have you tried Nortriptyline or Amitriptilyn? These meds can help w/ pain as well. Also Aterax too. You may have tried them already though. You are probebly going to have a hydro/cysto done to take a look in your bladder and hopefully help w/ pain at the same time. You might feel pain for a while after but many get relief eventually. There is an area to get info and input from others who have gone through this on another post down the line. Look it up if this is what surgery your going to have, it might help. I'm not much help there being that I never had it done.
Anyway, sorry to hear about your pain being so bad. Don't give up about getting your pain treated! Everyone who is suffering from pain deserves to get relief no matter what there age is!! Make sure you are open w/ your doc when asking for pain meds. Keep a dailey pain diary showing him/her how much you suffer and what a day in your "shoes" feels like. If possiable, bring support w/ you, your mother, father, close friend ect., to vouch for your pain. If the Doc. does not want to treat your pain, ask to be reffered to a pain specialist or pain clinic. If needed. Remember, I am not a Doc, and you don't have to listen to everything I say:) Just some advice and some ideas that I have tried or others have that just might help.
Sorry so long, I just feel bad for you and hope in some way I could help. I will keep you in my prayers! Good luck and let me know if you need any thing else. This is a great place to come to for help! You won't feel alone here, we all understand! Hang in there, things will get better soon.
Take care and God Bless, Cassandra:angel:

[ICNDonna]

I'm glad you found the IC Network. Have you read the information in the Patient Handbook (link is at the top of this page)? You'll find the IC diet there, which can be a huge help in getting symptoms under control. Are you still taking Elmiron? It can take six months or longer to be effective, but some find it to be their answer.

I hope you feel better very soon.

Sending warm healing thoughts,
Donna

[July]

I'm sorry to hear you are feeling so badly. It is so frustrating to go and see drs. and not get any solid answers. I will keep you in my prayers that you get treatment that works and eases the pain.

In the meantime, you may want to consider speaking with a counselor. Many counselors see clients who are experiencing chronic illnesses that lead to anxiety and depression. I recently started counseling mysellf, and think it is very healing, at least emotionally, to speak to someone trained to help people out in difficult circumstances.

Welcome to the ICN!

[KLathin]

Hi,

I'm new, too! I can definitely understand where you are coming from. Thankfully my IC isn't too bad, but I have suffered from endometriosis since I was 11 and fibro since I was 17. I am very familiar with spending days and days in bed. In fact, I'm going on a month right now (I had surgery a month ago for endo... again).

I can't give too much support on the IC front, since I know next to nothing about it. But hopefully a little moral support will do instead! I don't mean to sound trite, but things do get a bit easier as time goes on. You learn how to get stuff done even though you're stuck in bed a lot and you learn how to deal with your pain and still get some enjoyment out of life. It just sucks in the mean time :P And when you do loose it (b/c everyone suffering from chronic illnesses will from time to time), be sure to reach out for support, whether online or in real life.

Best of luck finding treatment!

Karin

[mgojkovich]

:angel: thank you to all who have responded to my thread! i have tried ametryptiline and it makes me sick. detrol didnt really do anything because my bladder is not overactive. i was on elmiron for more than 6 months with no relieve. valium, morphine, NOTHING will work. i appriciate all of you for responded so quickly. you all are in my prayers as well. i will be going in for hydrodistention soon but i am scared. my great grandmother has had it for more than 30 years and has tried every surgery, pill, and counsil out there. im just really scared that it might be me some day! all i can rely on now is my faith and the faith and prayers of others. hearing other responses and stories help out alot as well! thank you again and God bless:pray: