Thread: Im New Too, Please Respond...
02-06-2007, 03:05 PM #1
- Join Date
- Mar 2005
Im New Too, Please Respond...
I've been hurting now for 7 yrs, Wow seems like forever. I was told by three Doctors after haveing 6 surgeries to fix me (ending up in a Hysto) that my pain is my bladder (IC) . I work now after being off for a year and half, because I was turned down for disability. I am getting very bad again, I've gone from having to go all the time to now I have bladder retention so I have to cath myself dailly. Working and pain do not mix... I'm starting to be extremely tired all the time and this continuous pain is starting to make me very emotional to say the least. well, that is a little history.. I just need to understand why it has changed so bad that i cant hardly go potty with out straight cath myself.. I have so many questions, to ask to someone that is going through this same thing. I guess I really just need a shoulder to cry on sometimes...
02-06-2007, 03:15 PM #2
I am so sorry about your pain....Have the doctors discussed any medication or other treatments to help you?
We all care here and want to you to the network.
You can pm me if you ever need to.
Take careMiss Bessie
Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.
Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.
Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life
02-06-2007, 03:34 PM #3
I am so sorry you are going through this, but please remember your not alone, we are here for you..Hugs
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:
Diet Reference Sheet:
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.
02-06-2007, 03:39 PM #4
Have you tried any of the medications that help relax the muscles to make urination easier? There are several, among them are cardura, flomax, and hytrin --- I know there are others too.
Warm healing thoughts,
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
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.
Anyone who says something is foolproof hasn't met a determined fool
02-14-2007, 02:15 PM #5
I Am so sorry to hear your situation. I am in the same position as you are. My Ob/gyn, is now sending me to a differant hopsital to get another opinion about doing a hysterectomy, she feels i have Endometriosis also with the IC. I too go threw the same missing work, I had been off from work for 6 months, then i was finaly diagnosed with IC, only took 10 years to get it.
Right now I am having the issue too of not being able to go to the bathroom. Today i saw my urologis, she had to do a cathoder. and asked meif i wanted to learnhow to do it. I am scared to even try it. It hurt so bad when they did it i cant imagin doing it my own self. Im so sorry to hear you have to do it on your own self daily. I just cant imagin.
My doctor though asked me about going to Physical Tharapy. Have you tried that? I also am taking a few differant muscle relaxers, there is Flexeral, and also Elivil, which with the Elivil, they increase it seems every few weeks the last few months, I went from 25mg to 150mg, My ob.gyn said some have to take 180 before they have they muscel relax.
I hope some of this can help or is new surgestion, probably not. Like most of us, we have tried a lotof things alrerady which people surgest.
Keep strong, remeber you are always able to let it all out in here, We are all here for you. Keeping your stress in side only makes it worse. Blive me, I know! This place is so nice to jsut get some encouragement, and strength to go on and to keep going on. Somedays it seems impossible to do so.
Take good care.
02-14-2007, 02:45 PM #6
I've suffered with IC for almost 30 yrs now and in the past 2 yrs. it's gotten worse. I've tried and tried to figure out what caused the change........but who knows! I just know it's much more painful now.
I'm taking Elavil and that's helped quite a bit lately, along with Elmiron and Freeze dried AloeVera and wear the Oxytrol patch.
Feel free to write when ever you need a shoulder! I'd done my share of complaining here.......sure helps to know there are others in the same boat! Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Chronic Axonal Neuropathy & Myopathy
Dx'd IC May 2006 (after suffering for 25+ yrs!)
First Cysto 1979
First Hydro 1981 (Many treatments since then!)
Collagin"Durasphere" injections for urethra
Gall bladder surgery Aug. 2004
Gastric Bypass Dec. 2004
Dx'd: Barrett's Esphogus July 2004
Dx'd: Vaginal Atrophy 2005
Bladder surgery 2000
Dx'd: IBS 2000
Hysterectomy (fibroids) 1999
Dx'd: Degerative Disk Disorder 1989
For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:
02-14-2007, 03:08 PM #7
I'm so sorry to hear your story... unfortunately, there are a lot of us here who can relate. But, that means you've definitely come to the right place to find support
I don't know why your symptoms changed suddenly, but IC is often hard to explain. I know I've experienced both frequency/urgency and retention (and both at the same time, if you can imagine that) so I know how awful it can be.
Donna's suggestion is a good one -- have you asked about Flomax or Cardura? These drugs are called alpha-blockers, and are used to relax smooth muscles in the body. Some of these, like Cardura, are used to relax blood vessels and reduce blood pressure -- but it was also found that they can relax the muscle at the base of the bladder, the ones that allow you to urinate. So, they were prescribed first to men with difficulty urinating due to prostate problems, but they can also work in women who are retaining too. They can work quite well for some people!! It's worth a shot if you haven't tried it yet. Talk to your doctor about the idea.
And oh, I can so understand your feelings about work and pain... I work full-time in a laboratory for someone who seemed to understand at first but has progressively become more difficult...someone who makes me feel guilty (or TRIES to) even if I have to miss work due to recovery from surgery. Not only do I understand that aspect, I know how hard it is to get up in the morning when your bladder hurts so bad you can hardly stand, and how hard it is to stay focused at work when you haven't slept the night before because of pain or because you were peeing or trying to pee.
Please PM me if you want to discuss anything at all... I, as well as the rest of the members, am here for you
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. 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.
02-14-2007, 06:25 PM #8
- Join Date
- Sep 2005
Sorry you are having a hard time, stress can make it worse.
I think most of us w/IC go through easier times than others times are awful.
Not sure what your treatment plan is but i hope you will get releif soon.
I noticed you said you were turned down for dissability, was it the first denial, did you appeal it, do you even want to?
I only ask because i had a very difficult time w/dissability as well they denied me the 1st time so i got a great atty, who charged me NOTHING unless i was to win and guess what I won! I live in Fl also so if you decide to try w/SSI again and would like the name of a great atty who knows about IC and has worked SSI dissability fights for 33 years.
Even if your far away from him he will give alot of time on the phone even if you just need some advice.
TraceyDiagnosed w/IC 7/18/05
Dx'd w/Endo 5/5/06
Elmiron-100mg 4x's a day
Atarax-10mg's 2x's a day
Oxycontin 40mg-Only when i can't take it anymore!
Laparoscopy done, Endo lasered, Let's pray it stays away!
"If you haven't gotten all the things you want, be grateful for the things you don't have that you don't want."
02-14-2007, 08:10 PM #9
HAVE YOU TRIED DMSO TREATMENTS? THE WORKED FOR ME ALONG WITH PAIH MANAGEMENT. I WAS TAKING PERCOCET, NEURONTIN, ELMIRON, ZANAFLEX AND CELEBREX
PLEASE SEEK A PAIN MGMT DOC AS MINE WORKED WONDERS
FEEL BETTER SOON
MARYNEW YORK YANKEES ROCK THE HOUSE. 26 WORLD SERIES CHAMPIONSHIPS, THE MOST EVER\
GO YANKEES :woohoo: :woohoo:
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