Thank you for visiting the ICN Support Forum. We are so happy that you found us! The ICN Support Forum is home to 50,000 patients who have participated in our 24/7 support system. However, to protect the privacy of our members, members of the public can not read posts unless you have registered first.
It's easy to register! Just click the "sign up" button in the upper right corner of the page. Make sure you use a correct email address because we'll send you an email to confirm that you are a real person!! We also screen all new applicants to verify that they aren't bots or spammers! If you have any problems, please feel free to send a quick email to: [email protected]!
Well tomorrow is the BIG day. Hoping Like crazy that it will put this flare to an end I just want to have ONE day painfree! I am so tired of being in pain. I really really hope this works. Keep me in your thoughts. I will write some more tomorrow when I get done.
Mia Sowell
Fort Worth, TX
2 Kids
Ethan (3)
April (17)
Husband Eric (Very Supportive)
Clinically Dxed 04-16-07
Symptoms Since 2004
Meds:
Elmoron 400mg 2x Day
Atarax 50mg 1x Day
Xanex .50mg 8 hrs As needed
Vicodin 5/500mg 4-6 hrs As needed
Xanaflex 4mg 1x Day
Urelief Plus 6 hrs as needed for Bladder spasms
Prelief as directed
Good luck, you will be in my thoughts. I just had one and the pain does get worse before it gets better, so don't loose hope. Be sure you have pain meds, pyridium or like and rest after you get home.
Good luck! I needed pain meds after mine but I didn't have any retention or problems peeing so hopefully you won't either.
Christine
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
Well they confirmed the IC for sure! will scan in the pics tom. still pretty woozy from all the meds. I am supposed to go see him in 1 week and that is sooner than originally scheduled. The numbing meds they washed me with after is wearing off and pain is REALLY BAD. Going back to bed will write more later.
Mia Sowell
Fort Worth, TX
2 Kids
Ethan (3)
April (17)
Husband Eric (Very Supportive)
Clinically Dxed 04-16-07
Symptoms Since 2004
Meds:
Elmoron 400mg 2x Day
Atarax 50mg 1x Day
Xanex .50mg 8 hrs As needed
Vicodin 5/500mg 4-6 hrs As needed
Xanaflex 4mg 1x Day
Urelief Plus 6 hrs as needed for Bladder spasms
Prelief as directed
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.
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
Mia Sowell
Fort Worth, TX
2 Kids
Ethan (3)
April (17)
Husband Eric (Very Supportive)
Clinically Dxed 04-16-07
Symptoms Since 2004
Meds:
Elmoron 400mg 2x Day
Atarax 50mg 1x Day
Xanex .50mg 8 hrs As needed
Vicodin 5/500mg 4-6 hrs As needed
Xanaflex 4mg 1x Day
Urelief Plus 6 hrs as needed for Bladder spasms
Prelief as directed
Ouch! Those pictures look painful! I never posted my pictures because my bladder looked pretty much normal from the hydro. It wasn't until they got the results back from the biopsy that they confirmed that I had IC from the mast cells that were all over the place. I hope you start to feel better soon!
Christine
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
I was diagnosed with IC by just a regular cystoscopy and I had alot of imflammation and alot of those veins. Does anyone have any pictures of what a normal healthy bladder looks like? I have searched the web and cannot find one. I am just curious to see what a healthy bladder looks like.
Jen
Thanks you guys for all your well wishes and prayers
I cannot thank you guys enough for being there for me throughout this process. I am glad that the cysto showed the IC without question because I myself needed validation for all the pain. I am back full on flare again after the cysto. I look about 5 mos pg again and can't sit or stand for very long. I am so tired of all of this. The achyness just refuses to subside. But, at least I know it isn't all in my head and I am not faking it for attention. IT IS REAL. Trying to keep my head above water as far as the depression goes. Sometimes I can and sometines I can't. Thanks again for all your support. If anyone here has a myspace I want you for a friend.
Mia Sowell
Fort Worth, TX
2 Kids
Ethan (3)
April (17)
Husband Eric (Very Supportive)
Clinically Dxed 04-16-07
Symptoms Since 2004
Meds:
Elmoron 400mg 2x Day
Atarax 50mg 1x Day
Xanex .50mg 8 hrs As needed
Vicodin 5/500mg 4-6 hrs As needed
Xanaflex 4mg 1x Day
Urelief Plus 6 hrs as needed for Bladder spasms
Prelief as directed
Hey there, Myspace addy is on the bottom of my Sig.. Would love to have you added as a friend
Ronda
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!
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.
Oh Crap Mia, I denied your request because I didn't know who you were, I get those fake friends requests all the time and your picture was so pretty, usually that's a fake friends request, lol, I'll send you one now.
Christine
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
Comment