Thread: New to this...
08-29-2007, 02:22 AM #1
- Join Date
- Aug 2007
- State College, PA
New to this...
I am 19 years old and in my second year of college. I've been dealing with this issue for over a year now and it only seems to keep prolonging itself. I have had countless uti's in the past year and finally a doctor mentioned IC. Of course this particular doctor described it to me in an end of the world type of way. I have not been diagnosed. I finally found a doctor that I really love but it was right before I had to leave for school and she was unable to perform an instillation. I will be going home for that in a few weeks but at the moment I am just trying to survive until that day comes. I always feel like I'm just surviving until the next appointment. I don't know if anyone else has this problem, but it always seems like the pain and the other symptoms are the worst when I'm walking. This poses a huge problem when I walk for a half hour to get to each class. I have been on the elimination diet for about two or three weeks now but I have come to decide that anything I eat causes problems. Does anyone have any tips to keep me moving until I can get some answers? Thanks!
08-29-2007, 02:31 AM #2
The Patient Handbook will help you learn more about interstitial cystitis. I do think it's important that you have a diagnosis. Hopefully after you see your urologist you will have that.
And I hope you feel better soon.
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
08-29-2007, 04:49 AM #3
Sorry to hear you are going through so much at such a young age. Have you tried Azo Standard? It's over the counter (you can get it at Walgreens). It's like anesthea for the bladder. It really helps with pain.
I hope your dr. tests you for IC before starting any treatments like instills. There's lots of great meds out there now for IC and since you are young and starting your treatment right away you should get some relief much faster than those of us who didn't have that option years ago.
Good luck to you! and read that IC handbook and stay on the diet.
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:
08-29-2007, 06:43 AM #4
Can you find a uro closer to where you go to school? I feel for you. Hopefully the instills will work. Are you taking any other medications? I also felt like I was living from one appt to the next for the first couple of months.Symptoms: Increased pain with activity (especially lower leg work and bending over); stabbing urethral pain, menstrual cramp pain, cannot wear tight pants, feel worse during spring/summer allergy season. The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007
IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
Treatments for my IC/PFD:
Elmiron 400 mg per day; Physical Therapy for PFD; Zyrtec; Singulair
Ice packs and laying down
Tried and Failed: Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches, Cystoprotek (only tried a couple months but didn't seem to do much)
Other Diagnoses: PFD diagnosed 9/09; Fibromyalgia
Gastroparesis (delayed gastric emptying) Anxiety
Other medications: Ambien, Zegerid, Ativan, Zyrtec
MOMMY SINCE 10/28/08
EXPECTING BABY BOY 6/30/11
08-29-2007, 07:57 AM #5
So sorry you are going through this.... Like Roxie mentioned Azo is good for spasms and pain, burning.. Also warm baths with help.. And drink only water, this will keep your pee diluted and hopefully keep you from flaring, until you can get bk to the uro... Good luck!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.
08-29-2007, 01:55 PM #6
- Join Date
- Feb 2007
Hi April - I am so sorry to hear that you are not feeling well. There are some medications that are non-intrusive (that have helped many of us) that you can ask your doctor about also. I only take Elavil and that has helped me a great deal. I have read that others on this board have had success with Atarax. These are just some things that you can read about and ask your doctor about. I am so sorry that you have to worry about all of this while you are starting school. I am keeping you in my thoughts. Keep us posted on how you are feeling and ask any questions that you may have. The folks on this board are so helpful. Wishing you well...Linda
Last edited by lan; 08-29-2007 at 02:05 PM.Sudden onset of UTI like symtoms on Dec 27, 2006.
Diagnosed with IC on March 12, 2007.
Current Meds: 50mg Elavil
"Be kinder than necessary, for everyone you meet is fighting some kind of battle" author unknown
08-29-2007, 03:05 PM #7
- Join Date
- Aug 2007
- State College, PA
Thank you so much for your kind words. I actually hassled my doctor AGAIN and she finally prescribed something similar to Azo-Standard for me. Hopefully it will kick in soon. I will let you know how the diagnosis goes in a few weeks. I hope everyone is doing well. You have all helped me so much already. It's just nice to know I'm not alone.
Last edited by ICtears; 08-30-2007 at 01:34 PM.
08-30-2007, 06:26 AM #8
I am so sorry that you are miserible! I am in college (24 y/o) and starting med school classes. It is rough, believe me. In undergrad, I had to get a handicap parking decal so I could park next to my class buildings. It helped quite a bit. I also had to let professors know why I had to leave their hour long lecture 1-3 times. Some had special exam arrangements. I am doing better now (maybe meds or the hydrodistention), but I can sit through 2-3 hour lectures if I don't drink anything before.
As for the walking. Yes it is much much worse for me. Running is completely out of the question now (before IC, I was training for my first 1/2 marathon when the symptoms appeared).
Have you tried the IC diet? That seems to help a lot of people. I can't do tea, coffee, or or a couple of things. Diet doesn't really seem to make a difference, but I try to stick to it as much as possible.
Good luck! I know it is tough. I hope you can find a way to feel better![SIZE="1"][B]Be well, Alyssa :hi:[/B]
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