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Hi...I am so lost right now I don't know what to do. I have Polycystic kidneys and a history of stones. 4 stones were removed surgically in 4 different surgeries. I had so much pain later, that another surgery was done to look for a 'hidden stone' and in the process, my Urologist did a hydro-distention (I think it is called) to look for IC. He told me no IC. That was in Nov. I have a history of urinary frequency (years of it), but now the urgency is so intense that I can't leave my house. I have been in tears for days. I had a CT again and the doc said no stones, but he thinks I had a UTI that I treated myself with Cipro (I had some in case of another UTI) and now I am on a steroid pack for 5 days. I am still going every 10 minutes or so and can't even drive down the road for having to stop. I take Xanax 2mg., every night for the bladder and have done for a year. No significant help. I get up at least 4-5 times a night to pee and I'm exhausted and ready to throw in the towel. Could this be IC anyway? Do you have to have a positive test on exam to identify it. I am truly at my wit's end and having read your stories, I could just cry for all of you. I don't know how you put up with this all the time. It has been a week now and I feel hopeless. Any suggestions?
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My bladder looked normal when they did my hydro but they also did a bladder biopsy and the biopsy came back showing a lot of mast cells which is a sure sign of IC.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
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I'm so sorry that you are feeling so awful. Is it possible for you to call your Doctor? It's hard for them to diagnose an infection if you are currently on antibiotics. It may be possible that it is in fact an infection that isn't being treated with the correct antibiotics for that particular infection. When you are feeling a bit better, the ICN has a wonderful guide on IC for newly diagnosed patients. There are simple at home suggestions such as changing what you eat and drink that can help relieve some symptoms. The link to the ICN Patient Handbook is here: http://www.ic-network.com/handbook/diet.html#topfive
Maybe your doctor can prescribe something to calm your bladder down until he can investigate further. Have you tried anything like Pyridium or Pyridium Plus or Uristat? (That is the stuff that turns your urine orange and or blue)
Some people have some relief with an ice pack or a heating pad.
I hope you can get ahold of your Doctor so you can get through the weekend with some relief. It may be time to find another doctor if you feel that this one isn't meeting your needs.
I’m sure someone else will pop on here with some great tips.
Well Wishes,
KaraComplex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.Comment
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does anything stop your urgency?? Unfortunately, I have terrible IBS with constipation, so things like Detrol really give me issues. Still, I tried the Detrol and it had no effect. Does everyone get stopped up with Detrol or vesicare? I'm just utterly miserable right now and don't know who to go to for help.Comment
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oh Kara! I was posting a reply to Griffsmommy when your response popped up. I am so sorry for all you have been through. You are a real inspiration. I know I sound like a wreck right now, and I guess I am. As you well know this incessant urgency is wearing me down and I don't really have any help for it. My doc is out of town and I don't think he really understands how miserable I am, anyway. My daughter is facing a very dangerous surgery in the near future and I am worried sick about being able to travel to take her to the surgeon and be there for her. I'm sure the stress isn't helping. I'm off the antibiotic and on the steroid pack right now and the doc told me that maybe the infection just irritated the bladder. It's been a week and I feel sure any irritation should have worn off by now. I had some pyridium from past UTI's, but it isn't helping the frequency issue. I am trapped between the bedroom and the bathroom and simply freaking out.Comment
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My suggestion is to make an appointment and go back to see your urologist. And if he/she doesn't have an suggestions or help for you, it would be time to seek a second opinion.
In the meantime, it could help to give the IC diet a try.
Warm healing thoughts,
DonnaStay safe
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.
Patient Help: http://www.ic-network.com/patientlinks.html
Sub-types https://www.ic-network.com/five-pote...markably-well/
Diet list: https://www.ic-network.com/interstitial-cystitis-diet/
AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/
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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Nogo,
Your Doctor should have an oncall backup while he's away. When you speak to them try asking them for anything that could help you. You could go to the ER if it's really out of control. Maybe you can ask the Doctor what he can give you over the phone for urgency and frequency, specifically. You could also have a family member make the call for you. Sometimes it's helpful to jot down what you'd like to say on paper so that you know you have asked for everything you could think of in that one phone call. Be specific and factual about what is happening and try to keep your questions brief.
Sometimes it's a matter of finding a Doctor that is interested in diagnosing and treating IC.
I understand the traveling fears. They have all kinds of neat things that you can do while you are on the road if you can't stop or find a restroom. Making and IC travel kit can help to ease the fear of making that trip.
KaraComplex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011
"One hour at a time, this was NOT my American Dream but it has to work out somehow."
I also have some journals of my journeys, past and some present at:
http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/
Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.Comment
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Hi nogo,
When im really in trouble like that I start taking rolaids antacid.I take several of them at a time.This seems to neutralize my stomach acid and gives me relief in my bladder after a few minutes.The bad part about it is that my stomach will start aching afterwards but its better than the pain and burning.It does work but I dont use this technique unless im really desperate.
GoldSeals54 year old male
Diagnosed with IC in 1994
Had symptoms since 1992
Three cystoscopies.One biopsy with hydrodistention.
This is what I have tried,Dmso cocktail,Elavil,Atarax,Hytrin,Detrol,Pyridium,Elmiron,Allegra,Augmenti n,Flomax,Ditrapan,Vesacare.
Sent urine samples about 10 years ago to the famous Dr Fugguzatto.Went through plenty of Dr's which took about 2 years for an IC diagnosis.I am considered having one of the worst IC conditions known to my doctors.
Thanks to reading the great info on this board I am presentally trying 3 more natural remedies.Msm,Glucosamine,and QuercetinComment
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Thank you everyone for your input and caring tips. I am trying to reach my doctor's on call substitute. In the meantime, I am just hanging on as best as I can. You are so kind to offer these suggestions and take time to help me out. I feel like an idiot constantly bugging my doctor about this, but there must be some help he can give me. Again, I admire you all so much for your coping mechanisms. I'm not doing this too well.Comment
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