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At what age did you get IC?
Something I am very curious about, at what age do most people get IC? I am 63 and was diagnosed last Sept. It hit me like a truck with no warnings that I can remember. I have read where many friends had symptoms for a rather long time leading up to their diagnoses. I asked my URO why he didn't take a piece of my bladder to make sure I don't have cancer. His answer: You have no blood in your urnine so there is no cancer. I did have a HYDRO and pictures taken. My Bladder looks like weeks old road kill. I wouldn't wish IC on anyone but I hope I'm not the only one to come down with it so late in my life because I'm still worried about cancer. Ziggy
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I was officially dx'd at 40, but believe I have had it maybe my whole life, as a child my mother said I had constant UTI's, pain, etc. I have alot of blood in urine and my grandfather died of kidney cancer, and she said no cancer or no need for biopsy. I think they can see the cancer when doing scope and hydro and if need be, they do biospy. -
symptoms started when I was 20, but wasn't diagnosed until I was 29.Comment
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Symptoms started at 16, Diagnosed at 21-it was misrable going until the diagnosis, the doctors said I was faking it, or all in my head, or trying to get my parents attention. I should have sued for the eotional damage this caused me...
Erika
IC diagnosed officially via cysto/urodynamics 1/26/07
Grade II Endometriosis diagnosed via lap 12/11/07
"Fall down seven times, Stand up eight."
"Life is a tragedy for those who feel and a comedy for those who think."
Current Treatments:
Interstim Since 5/25/07!
Birth Control
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I was officially dx at 32; but had problems from the age of 18. Some were true UTI's and some were not. I went thru a lot of test and procedures until one day one of my Uro's asked another in his office said "I don't know what is wrong with my patient and he said it sounds like IC-but she is too young for it-only way to find out is to do a cysto-hydro" anyway they did and I do. Here 15 years later ..... I'm clicking away!Comment
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I started symptoms when I was 18, and got diagnosed at age 20. I went through hell trying to figure out what was wrong with me. It stunk being young and not able to live a "normal teenage life." Dr's told me it was in my head that I was way to stressed and to forget it. Spending usless money on anitbiotics that never worked!!!! I wish I knew how much money I spent on medicine. Sad....***Rachel***
Dance like no one is watching
Love like you've never been hurt
Live today like it's your last
Dxd with IC in June '06
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I have personally met two women who developed IC past the age of sixty. One, in fact, was 70 when she first had symptoms. You can develop IC at any age.
DonnaStay safe
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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 foolComment
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I had the symptoms from the age of 15 on and was told tht it was all in my head and they couldn't find anything wrong with me at 32 i was diagnosed and that was 5 years ago, I have extreme pain and no one can find a drug that will help with the pain.Started Vaginal Valium Suppositories April 2014
Hysterectomy April 2003 (for abdominal pain),Diagnosed with IC August 2003
Diagnosed with Pelvic Floor Disorder 2004,Had right ovary and fallopan tube removed 2005
Diagnosed with diverticulosis 2006,Interstim December 2006,Home Instillations 2007-not effective
Diagnosed with Fibromyalgia November 2007,Appendectomy February 2008,
Interstim repair December 2008,Removal of the Interstim August 2011,
6 Hydrodistentions from 2003-2009 Diagnosed with restless leg syndrome March 2014
Diagnosed with Raynaud's Syndrome November 2013
Ambien 5mg for sleep.
Elivil 50 mg at bed
Lisinopril 20mg in AM
Effexor 225 mg
Oxycodone 10 mgs 2 x a day for pain
Baclofen 20mg 3x a day
Phenazopyridine 200 mg as needed
Omeprazole 20 mg at night
Lyrica 450 mg daily
Requip .50 mg at night
Ketorolac 10 mg as needed for migrainesComment
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My IC started at age 35, 2 cycles after I quit a birth control pill I'd been on for 10 years. I had not had any bladder infections since age 5, nor any yeast infections ever. I have the most severe case, requiring diet, oral meds, rescue instillations & physical therapy.
My mom's IC started at around age 62, after stopping her estrogen medicine.
She did have a bad yeast infection around that time too. My mom's IC is managed with diet, low dose Elavil, & physical therapy.
My grandmother's probable IC started around age 70, no medicine or illness connection for her as far as we know. (Her case is milder than ours - managed by diet alone)
I do wonder if there is a pattern in genetic cases of IC with it having earlier onset & more severe symptoms each generation down. ??Kadi
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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.
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New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
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Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!Comment
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I also wonder if these boards make it seem like more younger women have IC, when it might just be that younger women are more apt to use the internet.Kadi
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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.
------------------------------------------------------
New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
Source - Pinterest
"
Current treatments:
-IC diet
-Elavil 50mg at night
-Continuous use birth control pills (4-5 periods/year)
-Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
-Pyridium if needed,
-Pain medicine at bedtime daily, as needed during the day several times per week
-Antibiotic when doing an instillation to prevent UTI
-Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
-Dye Free Benadryl 50 mg at bedtime
-"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
-Managing stress= VERY important!
-Fur therapy: Hugging the cat!Comment
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I was 28 when my symptoms started and I was diagnosed 6 weeks later by the first Urologist I saw.Comment
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My personal opinion is that a lot of older people do have IC, but I think the doctors just dismiss it and use the excuse that their bladder problems are just because they are aging.. I really think my mom has it..She is 66 and has always had bladder problems, but the doctor has told her that its just something she has to deal with and said it comes with age..
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.
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I was diagnosed at age 27. A year and a half ago. My syptoms started early December, and my doctor suspected by the end of December that I had IC. I was officially diagnosed last March. I was one of the lucky ones.Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.
I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!
Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.
I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!Comment
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I was diagnosed at age 21, but Id had pain for a full year before that and frequency for MANY years before that...Comment
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I started having the symptoms after my son was born when I was 19......suffered many years with no medication and was 'offically' dx'd 2 yrs ago. I'm 51 now. Roxie
Double Spinal Cord Stimulator surgery 8/09
Unsuccessful MiniArc sling surgery 12/07
Dx'd Hypothyroid
Dx'd Chronic Axonal Neuropathy & Myopathy
June 2007
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
Laminectomy 1989
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:Comment
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