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I have always found that my worst flares come just before/during my periods. Anyone else like this?
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Interstitial Cystitis: Elmiron and Hydroxyzine
Depression/Anxiety: Remeron, Cipralex and Clonazepam
*tried instills for nearly a year, had a break then started again for about 4 months...discontinued due to no improvement and increased flares
* 2 hydrodistentions :
* currently on "Nabilone" for pain management
Taken the following:
Gabapentin
no relief but could tolerate it
Lyricano relief but could tolerate it
Cymbalta severe depression/anxiety etc.
Topamax severe nausea and weight loss
Oxycodone: I could tolerate if I used it for flares only...not for extended use due to constipation
What helps IC:
yoga/meditation are my current treatments along with chiropractic and pelvic physiotherapy and acupuncture
Other conditions...
Vulvadynia (amytriptaline cream - no longer using to to irritation)
Severe IBS
Chronic Sinus pain (nasal rinse as need)
Migraines
Lower back and sacroiliac joint disfunction
Allergies: Erythromycin, scents and detergents -
tampoons
tampons increase my frequencyQuit ELMIRON due to hair loss
Cystoprotek ROCKS!
find me on FACEBOOK -
search my email [email protected]
Current Meds:
AM Cystoprotek & ATARAX 50mg
Dinner CYSTOPROTEK
PM Elavil 25mg
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I flare just before my period and in the first day or so. Some people are worse off when they ovulate. It varies a lot, but many women with IC do notice a worsening of symptoms related to their menstrual cycle in some way.
Tampons are impossible for me. Well, anyway, one tampon set off the worst and longest flare of my life, and I'm not giving them a second chance! Fortunately my periods are pretty light.Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
Wishing you happiness and good health, and all the best out of life.
Peace, Carolyn
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Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007
On the Beach with IC Comment
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Getting my period def sets off a flare for me, I'm having one right now. I get this horrible feeling like someone is squeezing the crap out of my bladder when I pee, I only get this particular feeling exactly like this when I have my period. I however do use tampons and don't seem to have any additional problems. Even if I don't use them I flare, I really would hate to give them upChristine
I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
I have tried every oral medication as well as rescue instills and DMSO.
I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)
Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
Also proud mom to the best Bullmastiff on earth, Claus
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Yes I was like that I have endo to so when I was having my periods I thought I was dying..I would have an IC flare and have the endo pain..Thats when the GYN put me on continious birthcontrol, so I would not have a period and would not have all the problems.. It works great for me!
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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