Why is Interstitial Cystitis so commo...
Michaela

Peoria, AZ

#61 Jan 26, 2008
cassandra wrote:
I have IC, and am currently deployed, in the military. I have had no problems with my bladder until I joined the service. I am convinced it is the food. I can not control what I eat out here and medication puts me to sleep along with the many other side effects. I have also had extreme weight gain. Does any body know how perservatives might effect the bladder
Some preservatives are major bladder irritants. One of the biggest problem with premade/prepackaged food is quite a bit of it had Citric Acid as a natural perservative. Citric Acid is usual quite irritating to people with IC. I know it bothers me BIG TIME but everyone is different. My husband is in the AF and I joke that I could never be in the military because I can't leave the battle field every 15-20 minutes. Thanks for your service. Especially with IC- you need the Medal of Honor!!!:)
Michaela

Peoria, AZ

#62 Jan 26, 2008
**please excuse my typos. I forgot to proof read.
boothiie

Toronto, Canada

#63 Jan 27, 2008
i'm 17 and was recently diagnosed with IC. I can easily say that its completely ruined my life. I've tried Vesicare which worked at first but after about a month or two, symptoms came back. I'm now on Enablex which has done absolutely nothing. I know i have a ways to go but having IC has taken me out of school. Which i'm supposed to be graduating from highschool this year. Anything i can do so that i can actually leave my house and get my education?
thanks in advance :)
JudyM

Calgary, Canada

#64 Feb 17, 2008
Hi All, I've had IC for 3 years now. Like a lot of you I've experienced a lot of pain, sleepless nights, too many tears and a lot of confusion. As was stated earlier, IC is not just a bladder disease but a symptom of a bigger problem, an unhealthy body. I would suggest ordering Catherine M. Simone's Book "Along the Healing Path" you can get it through Amazon.com . She healed herself from this dipilating disease, and helps people sort out their confusion. There is no quick fix, but there are options available to allow us to heal ourselves. Good Luck and Good Health, Judy
JudyM

Calgary, Canada

#65 Feb 17, 2008
Hey Gang,

Two websites you will want to check out are: www.ichopeforinterstitialcystitis.com , from Catherine M. Simone and the other website is www.icpuzzle.com ,from Armit who healed herself of IC too.
These websites offer lots of hope and help in battling this ugly disease.

Happy Healing!!!
Judy
Jamie T

North Richland Hills, TX

#66 Mar 19, 2008
I was in remission from IC from 1992 to 2005 after having had 6 treatments of DMSO through catheter. It didnt work immediately but within weeks of my last treatment I went into remission. I have never had so much pain in my life. I came down with IC again in 2005 and no doctors in Maui did the DMSO. I find it funny to note that both times I got it followed my having the FLU and diarhea. My doctor instead prescribed PROSED EC which they no longer make with atropine so I switched to URISED with atropine and it took ALL pain away. I only had to take one pill at bedtime and all the pain was GONE. Now they have stopped making that medication too and I am dreading the return of this horrific pain. They still make Prosed EC without atropine, it helps enough to take the edge off but doesnt take all the pain away. I have found a doctor in Dallas that does the DMSO treatments and I am going to give myself another shot at that. After all, if it put me into remission for 13 years I dont see why it cant work again. Everyone should try this. You have to find a doctor that still does DMSO so many dont do it anymore because as my last doctor said "it doesnt work" and I said "then how can you explain that it put me into remission for 13 years?" He couldnt explain it. Some doctors just dont like the whole catheter thing but you know what, neither did I but IT WORKS!!!! I had no side effects. I only wish I had done it sooner. The Proced EC and Urised covered the symptoms so well I completely forgot I had it. But now with the discontinue of these meds I have to face the illness. Again, I believe I got this from something that was in the flu virus as I got IC both times when I got a bad case of the flu. Anyone else experience this? Hope this helps someone. God bless, Jamie
alice

UK

#67 Apr 25, 2008
i was diagnosed with ic about 4 months ago, after repeatedly seeing a doctor because i had frequent flare-ups. i am currently on cefalexin which has no effect what so ever, im only 14 fgs ive missed so much school, i have no social life because i need to stay around a toilet, even simple tasks such as catching a bus are stressful because i cant use a toilet. if his goes on for much longer i dont know what i will do, the worst part is, all the doctors i see are men, they dont understand they've probably never experienced this pain in their lives. theyjust say, drink more water, empty your bladder properly blah blah blah. i would not wish this on my worst enemy some days i just sit on the toilet for hours on end crying. all you ic sufferers out there, i will be praying for you as well as myself, and hope that one day the medical community will stop ignoring us and come up with a cure :( good luck everyone x x x
Michaela

Peoria, AZ

#68 Jun 15, 2008
Hello! I just created a website that has IC friendly recipes and tips for dealing with IC. It still has quite a bit more to be added to it, but I hope you find it helpful. Let me know what you think and I hope you are all finding some sort of relief today.
Michaela

www.iccook.com
Canadian_suffere r

United States

#69 Sep 3, 2008
dorohthy hall fla wrote:
<quoted text>
HI. MY NAME IS DOROTHY HALL I LIVE IN FLA. AND I HAVE IC. I CURRENTLY TAKE URISPAS, AMITRIPTYLIN 50MG.ANDELMIRON .I HAVE MY FLAIR UP THEN I TAKE 2 URISPAS.THAT HAS BEEN A LIFE SAVER FOR ME.THE AMITRIPTYLIN IS A ANTIDEPPRESANT BUT MY DOCTOR SAID IT WAS ON THE LIST FOR 1FOR IC PATIENTS.HOPE THIS HELPS
My urologist also put me on amitryptilin for my IC. You are right, it is used for depression but also for chronic pain and to help people get to sleep. I was on it for about 2 years when I started having trouble urinating.....Sometimes I would feel as though I had to go and then I'd have to sit on the toilet and push and push until I could void. Not only was this time-consuming, but also very painful. It progressed to where I was having to run a hot tub of water and sit in it at times to relax my bladder/urethra enough to actually be able to urinate. I went to my MD and explained what was happening. He doubled my prescription of amitriptyline. Eventually it came to the point where I wasn't able to urinate at all some times. I made several trips to the EMERG with a full bladder and not able to empty it. I would be catheterized and be sent home again. One time I was crying and screaming in the waiting room because of the pressure and pain I was feeling. The doctor recommended that I do self-catherization at home so that I wouldn't have to wait so long in the waiting rooms and could just relieve myself at home when I needed. He also upped my dosage of amitriptyline. Well I was glad to be catherizing at home because by this time I was needing to do this at least once a week. I have a very sensitive urethra and of course catheters are not pleasant for anyone. I got to the point where as soon as I felt the urge to urinate I would be praying that I wouldn't have to do another catheter, and if it was a time that I was able pee the natural way I would be thanking God that I had at least another hour catheter-free. I was so scared of having to use the catheter in a public washroom that I started taking my amitryptiline during the day sometimes if I was going out somewhere special. I remember being at a wedding and being so tired that I was pretty much in a daze and wasn't able to carry on a normal conversation,(remember amitriptyptiline helps people sleep as well). I figured being so drowsy was still better than having everyone hear me screaming in the bathroom trying to do the catheter.
Anyways, nothing like making a short story long ha ha..........
End result is that I was having all these problems and then I finally found out that one of the side effects of amitriptyline is URINE RENTENTION..........

I HONESTLY BELIEVE I WOULDN'T HAVE HAD TO START SELF-CATHETERIZATION IF I HAD NEVER BEEN ON AMITRIPTYLINE.

As for my current situation, I have been off amitriptyline about 3 months. I still do use the catheters, but not as often. The amitriptyline would be out of my system by now so I am not sure if there is some kind of long term damage or if my IC has simply gotten worse over this time as well. I am also in the middle of finding a new MD who will be able to refer me to a new urologist. My urologist, MD and that doctor from emerg all knew my symptoms and yet still prescibed/increased my dosage of amitript. and that scares me. When I asked my pharmacist (as a test of her knowledge) if she knew any side effects of amitriptyline, her VERY FIRST response was urine retention!!!

SOMETIMES WE NEED TO TAKE THE RESEARCH OF OUR DISEASE/CONDITIONS INTO OUR OWN HANDS!!

Anyways, I hope that this helps anyone who may be experiencing similar sypmtoms, in the least it gives anyone currently on amitriptyline something to watch out for.
Yohanca

Mamaroneck, NY

#70 Sep 3, 2008
Hi guys. im feeling misserable right now i am in so much pain. I've had IC since i can remember over 15 years now and i am 23 now. This has to stop, people not having enough knowledge of this, specially so called doctors. Please any one that live in new york city who can recommend me a good Urology ho knows abouyt ic please email me at [email protected] i seriously cant take this pain anymore it has ruin my life and those around me. please please i need help if you also know of a support group in the bronx or manhattan i would truly appriciate this. Thank you all and good luck to all.
Johnie

Bronx, NY

#71 Sep 12, 2008
dorohthy hall fla wrote:
<quoted text> HI TRY AMTRIPTLIN AND URISPAS . THEY SEEM TOO WORK FOR ME [email protected]
I take marshmallow tea, elavil and flomax. With exercising I am doing much better now
Nicole

Moncton, Canada

#72 Sep 17, 2008
I use an electric heat pad for pain and this helps a lot. I also use antiacids for ic flare ups, such as Gaviscon or Rolaids.You also need to change your diet to a low acid diet to balance the ph of your urine.But the best thing to use when the pain gets real intense is a sits bath with really hot water and epsom salt, it helps relax the muscles of the bladder. My specialist had recommended doing this at leat once a day to prevent flare ups and uti's.
Kcee wrote:
I was diagnosed with IC 4 years ago and I am still on Elmron the only medicine that they make for IC and I still have to take pain medication a couple of times a day. The pain is much better now than when I was first diagnosed or either I am just used to pain now however the pain is there 24-7. Does anyone have any suggestions as to what they do to relieve the pain? Has your IC every gone away?
gina

UK

#73 Sep 23, 2008
i havent had a diagnosis of Ic but it has been said there is a possibility of me having it. I am in so much pain it is relentless. I am seeing a urologist today and all i want him to do is tell me that he can take the pain away-but i know he can't. this has been going on for 2 months, i have beedn on amitriptyline for 1 month but it hasn't helped. I am too scared to have sex, and i am scared losing my relationship. Everything i read just depresses me more. No one close to me knows how much pain i am in, i dont like to moan all the time so i keep it in. I even hope that it wont be ic but something else just so might get cured. There is no way i can put up with this any longer i know some of you have had it for years but i am unable to bear it.

“so tell me......”

Since: Aug 08

Location hidden

#74 Sep 23, 2008
gina wrote:
i havent had a diagnosis of Ic but it has been said there is a possibility of me having it. I am in so much pain it is relentless. I am seeing a urologist today and all i want him to do is tell me that he can take the pain away-but i know he can't. this has been going on for 2 months, i have beedn on amitriptyline for 1 month but it hasn't helped. I am too scared to have sex, and i am scared losing my relationship. Everything i read just depresses me more. No one close to me knows how much pain i am in, i dont like to moan all the time so i keep it in. I even hope that it wont be ic but something else just so might get cured. There is no way i can put up with this any longer i know some of you have had it for years but i am unable to bear it.
Have you come across this website. Lots of useful info,
http://www.cobfoundation.org/
Karen UK

Bath, UK

#75 Sep 24, 2008
Kcee wrote:
I was diagnosed with IC 4 years ago and I am still on Elmron the only medicine that they make for IC and I still have to take pain medication a couple of times a day. The pain is much better now than when I was first diagnosed or either I am just used to pain now however the pain is there 24-7. Does anyone have any suggestions as to what they do to relieve the pain? Has your IC every gone away?
Hi there,
I was diagnosed with IC 2 years ago, for the first 12 months I tried every pain killing drug going, but to no avail. I had tests and scans,antibiotics in abundance. I then discovered a chinese medicine doctor in L.A who has been studying and treating this condition for the past 12 years. I was initially unsure but having read her patients sucess stories I decided to give it a go, up until then I would have never considered alternative medicine.I flew out to see her last October and to be totally honest haven't looked back. I have made amazing progress and IC no longer rules my life.I'm still on the road to recovery and I get the odd bad day, but it's exactly that.Gone are the 24/7 of constant pain and discomfort. I have now been under the care of Dr Matia Brizman for the past 12 months and I can't recommend her enough.The website is www.bomamed.com . Hope this helps.
Karan

Hillview, KY

#76 Oct 3, 2008
There truly is hope for IC patients. My daughter, now 22, suffered for four years before we finally got the diagnosis of IC. She did everything on the market at the time, finally doing the 9-week bladder instillations at Vanderbilt Hosp, which did not help. Her life was miserable. I finally found Dr. Russell Roby, in Austin, Tx, who believes that so many of these things are caused by hormonal imbalances and he successfully and regularly treats IC patients. We went to him, and he placed bio-identical hormones under her tongue, and instantly her pain was gone. I wouldn't have believed it if I hadn't seen it with my own eyes. Her pain (7 out of 10) went to "0" within seconds. Do yourself a favor. If you suffer with IC, that is needless suffering. Please check this out. That was in January, 2006, and she has since married, graduated from college, and is living a full, normal, and very productive life. Please don't think this is a hoax or voodoo. There are sound medical principles that are in play here. Please go to www.robyinstitute.com and read up on what he does. It was a miracle that we never thought we would find. Karan
Nicole

Zephyrhills, FL

#77 Oct 21, 2008
I am treated long distance by Matia Brizman she has her phd in IC and has helped a lot of people get out of pain. If you want to check her site out go to. WWW.icaroadtorecovery.com check out the other links that particular site has an interview about the process and leads to her official website.
Vicky

London, UK

#78 Oct 30, 2008
I don't yet know if I have IC, but since 6 months I am suffering from urethra pain (burning) and I often have a feeling of urge.

Hi Karen and Nicole,
I already read the story about dr Brizman and I'm very interested in this treatment, but before I decide to do this (I live in Belgium) I really want to know more about it.
Did you both have to go to Los Angeles? I'm worried about the financial part because you have to pay for the flight to Los Angeles and the treatment will also be very expensive.
Can you please tell me more about it, how everything is arranged when you live so far away?

Thank you in advance,
Vicky
Karen UK

Glasgow, UK

#79 Nov 7, 2008
Vicky,

I had to go out to L.A as Matia isn't allowed to treat you without seeing you.However once she has met with you,you don't have to go out again and all your consultations are then done by phone and email.
I understand your concerns financially,i managed to get a flight for 380 last October and i'm aware of someone going out there from the UK in November when it's cheaper.However i would say it was the best thing i ever did.
As there is so much to tell you,please feel free to contact me on my personal email, this offer is extended to anyone else also.Look forward to hearing from you soon Vicky. [email protected]
jill

Forde, Australia

#80 Nov 22, 2008
Kcee wrote:
I was diagnosed with IC 4 years ago and I am still on Elmron the only medicine that they make for IC and I still have to take pain medication a couple of times a day. The pain is much better now than when I was first diagnosed or either I am just used to pain now however the pain is there 24-7. Does anyone have any suggestions as to what they do to relieve the pain? Has your IC every gone away?
I have had this problem also for ten years and have finally found a herbal medicine that actually works. I finally feel like I used to and while on the medicine have no pain at all. The website is called Flourish Remedies
Herbal Pharmacy
Tallgum Ave, Doonan
(15 minutes from Noosaville) email is [email protected] au
I hope this is of some help it was for me
0413 024 901

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