Tweet
The Pain, The Urgency. Why Didn't My Doctor Catch This Sooner
-
JUDIE
-
IC is not easy to diagnose. A lot of the diagnosis involves the patient telling the doctor about symptoms. Hopefully, once you are on an IC diet, you will begin to feel better --- most of us do.
My IC was diagnosed 32 years ago and I actually live very near to a normal life. I do have some bad days, but the good ones outnumber those. I tell myself that everyone has some sicknesses so I'm not unusual.
Hang in there --- you will have better days.
Warm welcoming hugs,
DonnaStay safe
Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf
Have you checked the ICN Shop?
Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you. [3MG]
Anyone who says something is foolproof hasn't met a determined fool -
Donna is right..
Most people do get better with time.. So hang in there
Hugs
Ronda
ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!
Link to Patient Handbook:
http://www.ic-network.com/handbook/
Diet Reference Sheet:
http://www.ic-network.com/diet/icndi...tsheet0909.pdf
Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring
Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure
Meds I have Tried:
Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
Lexapro< Bad reaction to this med!
Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..
Dx With IC in Nov 2006 with Hydro/Cysto
Hydro/Cysto Caused Bladder to Rupture.
Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.
ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Comment
-
(((HUGS))) and
to the ICN...
Sharon
Shopping??? Did someone mention shopping? I'll get my hat... ;-)
Where I can be found most days.
Link to the ICN Patient Handbook:
http://www.ic-network.com/handbook/
Link to the IC Diet:
http://www.ic-network.com/diet/
IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.Comment
-
(((HUGS))) I know how overwhelming it is to be in miserable pain, feeling like you have a bladder infection, and then the doctor tells you it's incurable. It's normal to feel angry at the doctors who can't "fix" the problem, angry at your body for having this disease, and it's also very normal to feel a great deal of grief and anxiety about the future.
The good news is, you've already gone through the worst of it. The time before diagnosis is the worst. Now that you are properly diagnosed, your doctor or doctors can work to find what medicine or treatments work best to bring your pain and other symptoms under control.
The vast majority of IC'ers find that once they discover the right medicines for them (sometimes it can be a trial-and-error process, because everyone is different) they can lead a good life, a normal life, and a lot of times, they pretty much even forget they have IC, except for having to take some pills.
So there is much to hope for, now that you have reached this stage! Hang in there, and do ask your doctor if there is anything he can do to help you with the pain until the meds/treatments have time to work (some of them, like Elmiron, can take up to six months to work.)
Blessings, and welcome,
LoriComment
-
This is going to sound like such a bad cliche, but I know exactly how you feel. If you go back and read some of my earliest posts on this board, you will find messages I wrote with tears in my eyes because the pain was so excruciating. I spent a lot of sleepless nights, and had many nights when I cried myself to sleep. My family was not very understanding. They didn't realize how much pain I was truly experiencing.Originally posted by judiedavis View Post
The good news is...it can, and DOES get better with time and treatment. I started off with several pain killers, Elmiron, a drug for a swollen prostate and sleeping pills. Now, I am pain-free and eat and drink almost anything I want (still can't eat ANYTHING with MSG in it). I found relief by taking some natural supplements which helped me tremendously.
Find a good urologist, explore treatment options which work for you (because everyone is different) and follow the IC diet to find out which foods and drinks cause flares for you. There IS life after a diagnosis of IC!Comment
-
welcome to the boards ((((((((hugs))))))))'The will of God will never take you where the Grace of God will not protect you.'
Comment
-
(((hugs))) The good new is you have a diagnosis. Now you just need to find out what works for you (diet, meds, ect.). It will get better over time and with the right treatment(s).
Medical "Issues":
IC
GERD
Tachycardia(resting rate is 125-130
)
Medicastions:
Tramadol-as needed (IC)-50mg
Elmiron 200mg twice a day
Levsin .125mg 1-2 pills 4 times a day
Comment
-
Can I really have a life and have IC
I am 38 years old and have been diagnosed with IC since Aug. 2006. I have been in the hospital with flair ups about 7 times and I am still trying to maintain a full time job as well as be a wife and mother. I fear this disease may get the best of me and keep me from working. I am a nurse in my local ER and I fear they may wish I would just quit because I have been on FMLA so many times. I read an article that said about 70% of IC patients have to go on disability. Well for me that can not happen. If I dont work, we would loose our home, vehicles ect... My husband does work but could not pay all the bills by himself. And of course now the hospital bills are pouring and I am just praying for a ray of hope. I spent 5 days in the hospital last week and they sent me to a new urologist who did hydrodistention with Clorpactin on me two days ago. The pain was not nearly as bad as I thought it would be. I am due to go back to work in 4 days and I am so scared. I have to be at my best in order to care for others. I would love to hear from others who like me have no choice but to keep moving even though it feels like I am sicker than my patients sometimes. I know I have to find strength but it is so hard when I hurt so much now. Got any good advice?
Thanks for listening,
PaulaComment
Comment