http://www.ic-network.com/forum Meet other patients in the largest interstitial cystitis social networking site on the web with a support forum, message boards and live support chats - Interstitial Cystitis Network en Thu, 09 Sep 2010 05:48:31 GMT vBulletin 60 http://www.ic-network.com/forum/images/misc/rss.jpg http://www.ic-network.com/forum http://www.ic-network.com/forum/showthread.php?t=66516&goto=newpost Thu, 09 Sep 2010 01:29:14 GMT Hi Everyone!

First, let me say how incredibly thankful I am to have found such a wonderful and informative website and support forum! :)

I'll try to keep my story/symptoms as short as possible, but if any of you could please give me any advice/insight, I would truly appreciate it!

I started getting UTIs (or what I thought was UTIs) about a year ago and to be honest, they started when I began having sex with my boyfriend (now fiance). Maybe a day after sex (but not every time), I would get excruciating pain out of no where... terrible urinary urgency, difficulty passing any urine, and painful urination. I would go to the Urgent Care and they would put me on Cipro and I'd feel 100% within 2-3 days.

Then, about a month ago, we had sex (this time did not use lube which normally triggers this), and the next day I had what I thought was the UTI from hell. (not being able to sleep from the pain/urgency, etc). I went to Urgent Care and they tested my urine and saw bacteria, but not the kind that would indicate a UTI. Nevertheless, they gave me Cipro since it has helped in the past. 3 days later I was still in terrible pain and went back and they put me on stronger antibiotics which didn't help either. I went to a Urologist who didnt listen to one word I had to say and just gave me Prosed DS and told me to take it. I took it for about a week and didnt notice any improvement other than the side effects of racing heart and tightness in my chest which was pretty bad.

I went to my gyno and he said he thinks I have IC. They did a urine test and told me I have blood in my urine (none that I can see). He ordered me to have a Catscan which I had today. I also have a Cytoscopy appointment on the 28th to confirm if I have IC or not.

My question is, could it be anything else??? I am so scared that it is IC because it has been 3+ weeks without improvement. I am barely sleeping at night because the urgency and pressure is so bad. What doesnt make sense is the food that trigger IC. I have always eaten crazy foods and never had a problem, and for the 2 weeks prior to going to my gyno, I kept eating them and having the occasional glass of wine (all of this did not make my symptoms any worse). That is why I question if it is IC.

I saw something about pelvic floor disorder and wondered maybe if i have something like that (but I am only 27). I feel a lot of pressure around my vagina (and always feel it after sex almost like something is pressing to get out). I have also noticed there is a cherry sized lump on the right side of my vagina. I felt it when i was squatting down in the shower (i felt it through the skin, not by putting my finger inside me). I am wondering what that could be something to do with my problem.

Thank you all so much for your help! I truly appreciate it :) ]]> Not Diagnosed Yet with Interstitial Cystitis? VT101 http://www.ic-network.com/forum/showthread.php?t=66516 http://www.ic-network.com/forum/showthread.php?t=66515&goto=newpost Thu, 09 Sep 2010 00:59:48 GMT -------------------------------------------------------------------------------- Started the Jorge Cruise diet plan and been losing weight and its a pretty good diet. Allows only 15 grams of sugar a day and suggested that stevia products were a big help. So I bought some stevia root beer,... --------------------------------------------------------------------------------

Started the Jorge Cruise diet plan and been losing weight and its a pretty good diet. Allows only 15 grams of sugar a day and suggested that stevia products were a big help. So I bought some stevia root beer, packages of stevia and started to use them. After about a week I was having a weird itching on palms of my hands, and bottoms of feet, then I started getting gas, and very loose stools. I also had mild headaches and some heart palpatations about a half hour after using it. I didnt connect it until one day after I drank a root beer, I had a diarerra. I went on line and found many, many forums where people were complaining of the same thing.
I got interested in just what is this stuff, and I found out it is related to the ragweed family, and can initiate allergic and histamine release in people who are sensitive to ragweed. They also sometimes mix it with another sugar called erythritol which also causes problems with people who have asthma or bladder problems if you are sensitive to it. erthritol and manitrol are extracted from some type of yeast and one woman said they gave her urinary tract infections and yeast infections both.
Really bummed about this as I thoght it was a great idea, but I am a reactor to it, and allergic to ragweed so just relieved to find this out and get an answer to why I was feeling so lousy, thought I had the flu.
Hopefully, most of you will not be sensitive to stevia, as there really isnt anything short of pure cane sugar that seems safe these days.
__________________

Sammi ]]> General Diet Questions sami4 http://www.ic-network.com/forum/showthread.php?t=66515 http://www.ic-network.com/forum/showthread.php?t=66514&goto=newpost Thu, 09 Sep 2010 00:21:33 GMT Started the Jorge Cruise diet plan and been losing weight and its a pretty good diet. Allows only 15 grams of sugar a day and suggested that stevia products were a big help. So I bought some stevia root beer, packages of stevia and started to use them. After about a week I was having a weird... Started the Jorge Cruise diet plan and been losing weight and its a pretty good diet. Allows only 15 grams of sugar a day and suggested that stevia products were a big help. So I bought some stevia root beer, packages of stevia and started to use them. After about a week I was having a weird itching on palms of my hands, and bottoms of feet, then I started getting gas, and very loose stools. I also had mild headaches and some heart palpatations about a half hour after using it. I didnt connect it until one day after I drank a root beer, I had a diarerra. I went on line and found many, many forums where people were complaining of the same thing.
I got interested in just what is this stuff, and I found out it is related to the ragweed family, and can initiate allergic and histamine release in people who are sensitive to ragweed. They also sometimes mix it with another sugar called erythritol which also causes problems with people who have asthma or bladder problems if you are sensitive to it. erthritol and manitrol are extracted from some type of yeast and one woman said they gave her urinary tract infections and yeast infections both.
Really bummed about this as I thoght it was a great idea, but I am a reactor to it, and allergic to ragweed so just relieved to find this out and get an answer to why I was feeling so lousy, thought I had the flu.
Hopefully, most of you will not be sensitive to stevia, as there really isnt anything short of pure cane sugar that seems safe these days. ]]> sami4 http://www.ic-network.com/forum/showthread.php?t=66514 http://www.ic-network.com/forum/showthread.php?t=66513&goto=newpost Thu, 09 Sep 2010 00:00:42 GMT I finally got the official IC diagnosis and actually had my first bladder instill today! Was able to hold it for 2 hours. Starting Elmiron tomorrow and just started Elavil last week. I know nothing is a sure bet but it's sooo good to finally see a doctor who is listening to me and is willing to try different things. After 5 months of no treatment i'm finally seeing a little light at the end of the tunnel. If it weren't for this site I would have never hooked up with the person who got me to this new doctor so THANK YOU!!! :woohoo::smile tee ]]> Newly Diagnosed With Interstitial Cystitis Brenp2 http://www.ic-network.com/forum/showthread.php?t=66513 http://www.ic-network.com/forum/showthread.php?t=66512&goto=newpost Wed, 08 Sep 2010 23:40:59 GMT Basically my question is well...I finish my last dose of Elmiron tomorrow. However I still have my symptoms and I have only been taking it for like 2-3 months. I don't have another prescription and my doctor hasn't set up another appointment for me. What do I do from here? Do I just...continue with a diet and hope it gets better? Should I make an appointment myself to discuss whats next? I'm just so confused! I know it isn't anywhere near being in remission or settled down. Thanks for any help. ]]> Symptoms of IC CheshireKat http://www.ic-network.com/forum/showthread.php?t=66512 http://www.ic-network.com/forum/showthread.php?t=66511&goto=newpost Wed, 08 Sep 2010 22:38:45 GMT The Interstim trial went well. I believe this new doctor got the wires in the correct place this time, they are causing the correct response. They noticed my tailbone had been broken and had healed in a funny way. This could be what is causing a compression on the nerve causing an injury that... The Interstim trial went well. I believe this new doctor got the wires in the correct place this time, they are causing the correct response. They noticed my tailbone had been broken and had healed in a funny way. This could be what is causing a compression on the nerve causing an injury that eventually effected the bladder. If the trial is successful and they install the unit inside my body they will be able to investigate this further. I had two bad injuries to my tailbone, which caused pain for about six months, one in 1995 and the other in 2005. The bladder problems started in 2007. It could be a neurological cause for my problem but we will see. Take care of your bodies, they are so fragile and everything can just change in a single moment. ]]> Neuromodulation: Undergoing Trials or Surgery CathyKi http://www.ic-network.com/forum/showthread.php?t=66511 http://www.ic-network.com/forum/showthread.php?t=66510&goto=newpost Wed, 08 Sep 2010 22:17:40 GMT Over 15 inches of water in some places near where I live. Luckily it wasn't too bad by my house, just really soggy- thankfully I was wearing tennis shoes this morning going out to the car to go to work, as it was my foot went right on down, pulled it up needless to say my shoes are in the trunk of the car. The only thing is my roof has a leak in it--of course, thats when you find things like this out!
Haven't had a storm this bad for about 8 years. Going to work this morning ran into some water in our area but once we were on the freeway it was good just took us about 90 minutes to get there. ]]> Daily Chatter/Off Topic/Life outside IC mary124 http://www.ic-network.com/forum/showthread.php?t=66510 http://www.ic-network.com/forum/showthread.php?t=66509&goto=newpost Wed, 08 Sep 2010 19:48:11 GMT While I await my diagnosis, I seem to have cut down the pain (maybe because of using the IC Diet List) but the thing that drives me is urinating so much...my family Dr gave me some Vesicare to try. I used it for 3 days and got constipated so I stopped... then she suggested alternating every 2 days.... While I await my diagnosis, I seem to have cut down the pain (maybe because of using the IC Diet List) but the thing that drives me is urinating so much...my family Dr gave me some Vesicare to try. I used it for 3 days and got constipated so I stopped... then she suggested alternating every 2 days. I am thinking of trying again because I still have 2 weeks to go? Could this help? Just trying things to get me by! ]]> Not Diagnosed Yet with Interstitial Cystitis? DKIM http://www.ic-network.com/forum/showthread.php?t=66509 http://www.ic-network.com/forum/showthread.php?t=66508&goto=newpost Wed, 08 Sep 2010 18:51:07 GMT Hello to my IC Family!:hi: While I am still taking time off for personal reasons, I wanted to give you all an UPDATE on how well my Pudendal Decompression Surgery Recovery has been going. I had my operation via the TIR Method with Dr.Mark Conway who is now doing the TG method of PNE... Hello to my IC Family!:hi:


While I am still taking time off for personal reasons, I wanted to give you all an UPDATE on how well my Pudendal Decompression Surgery Recovery has been going. I had my operation via the TIR Method with Dr.Mark Conway who is now doing the TG method of PNE Decompression Surgery on patients that he feels would most benefit from it. He will do whatever method is best for each individual patient. I can't say if he would do one or the other on any of us as I am not Him nor am I a Medical Professional.

Anyway......back to my own individual case. I had my Pudendal Nerve Decompression Surgery a year and 5 months ago. I was unable to sit for no longer than 3-5 minutes and if I sat longer than that, I would suffer immensely with urgency and frequency (IC like) symptoms for weeks after. I would feel the need to use the bathroom every 5 minutes just like I did when I had the end stage IC.

Cut to Today: I can sit for several hours with the aid of my pain meds, muscle relaxers, and 2 nerve medications. Sometimes I still have to lie down and use ice all day long but those days are few and far between. I would say that my sitting has improved 95%. My overall lifestyle has improved 50%. Going into this operation, there were absolutely no guarantees that it would work and maybe not at all. There was the possibility of possible improvement on my pain levels and that did happen. My pain has decreased significantly, enough to say that the operation was well worth it. There has been talk about me going back in and having Dr. C do the TG operation if I want to try for more improvement with respect to the pain, but I'm not sure that I want to mess with the good outcome that we did get.........

I wish I had 100% pain relief, but when you have a case as complicated as mine is, sometimes all you can hope for is a 10% decrease in pain. At the point where I was at.....I was willing to try anything. I'm glad I did and I'm glad I found Dr. C. He did a great job and I know that he's there for me, should I want to try the more aggressive method.

So with my pain meds, muscle relaxers, nerve medications, and all of my operations behind me, all I can do is look FORWARD and keep on praying for the good days to come. On the my good days or hours....I'll take them and run, on my bad days, I'll crawl into bed with my kitties and try not to beat myself up so much and then try to take care of Kara and hope the pain goes as fast as it came on.

One hour at a time, that's how I live..............

That's my UPDATE!

Well Wishes to you ALL and some gentle Hugs,

Kara

P.S.

I'll be back in due time:angel: ]]> Pudendal Nerve Conditions Kara29 http://www.ic-network.com/forum/showthread.php?t=66508 http://www.ic-network.com/forum/showthread.php?t=66507&goto=newpost Wed, 08 Sep 2010 18:34:01 GMT OMG i keep going and going and going. what do I do to stop it???? all I have had is water today. I am in the bathroom every ten min or less. I drink something and 5 min latter im in the bathroom. I didnt think we past stuff that fast, do we. What is going on? I could understand if I drank something... OMG i keep going and going and going. what do I do to stop it???? all I have had is water today. I am in the bathroom every ten min or less. I drink something and 5 min latter im in the bathroom. I didnt think we past stuff that fast, do we. What is going on? I could understand if I drank something and hour or so laster I started going and going, but this is right after I drink. Should I do something? I stoped drinking because of having to go all the time. Its not just a little bit when I go, its alot. like I was holding it and I need to go now, or pee myself alot. you would thank that going that much that many times in a row that it would start to make you sick some how. My body cant be getting much water if its passing it that fast. I dont know maybe im just being silly because this has never happend to me before. :help: ]]> Not Diagnosed Yet with Interstitial Cystitis? jamie77 http://www.ic-network.com/forum/showthread.php?t=66507 http://www.ic-network.com/forum/showthread.php?t=66506&goto=newpost Wed, 08 Sep 2010 18:30:18 GMT I have been eating Kashi Heart to Heart Cereal for breakfast every morning and getting a medium flare by 11:00am everyday. I attributed it to the vitamins they put in the cereal. So I bought Mom's Best Honey Toasty O's. No vitamins. Still got a bit of a flair. I couldn't figure it out. Then I substituted Almond Milk for regular milk and I haven't had a flair since! yay! It was the MILK for some reason. It's so great when you can finally find a culprit after so long. Just thought I'd share in case anyone else was having this issue.

I also had been taking a bunch of supplements for my IC but was still feeling a little flair-ish. I stopped taking most of them and my bladder has never felt better. I guess less is more.

This damn illness can drive you mad trying to figure out what to do and what not to do. Eventually you kind of get the hang of it. ]]> General Diet Questions Lizzylu http://www.ic-network.com/forum/showthread.php?t=66506 http://www.ic-network.com/forum/showthread.php?t=66505&goto=newpost Wed, 08 Sep 2010 18:21:15 GMT Hello, For many of you having such bad side effects from Elmiron, it would be great if you could go to the FDA site and report them at this link: *https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm* Click on BEGIN and you can fill out a report. This will definitely help... Hello,

For many of you having such bad side effects from Elmiron, it would be great if you could go to the FDA site and report them at this link: https://www.accessdata.fda.gov/scrip...tch-online.htm

Click on BEGIN and you can fill out a report.

This will definitely help the FDA check into some of these terrible side effects from Elmiron. If they get enough complaints, like Hair Loss, Dizziness, GERD, etc., the FDA will investigate and find out what is causing them and put Ortho-McNeil-Janssen on report and get Ortho to help those who are having serious problems with the drug. When all of you say 1-4% have hair loss, I'm sure it is probably a higher percent; but they won't know if noone reports it. I went and filled out a report. I also called the FDA and I was told that even 4% hair loss, of which they have a record for, is getting to be a little higher than they like. That is not to say about the other side effects reported.

So, girls, get your information into the FDA and let them know the honest truth about the drug. Maybe someone will stand to attention and inform their consumers more about it's effects. ]]> Elmiron For Interstitial Cystitis IC/PBS embroiderybee http://www.ic-network.com/forum/showthread.php?t=66505 http://www.ic-network.com/forum/showthread.php?t=66504&goto=newpost Wed, 08 Sep 2010 17:19:12 GMT This is so annoying and rude I think. A "friend" told me she would like to go to dog shows someday. I mentioned it to her today about several dog shows coming up in the fall, and she text message me saying that dog shows isn't her thing. So she's just being 2 faced! Why do people do this?? You try and be friendly and ask 'friends" if they want to do this or that. It even happens to me at work. This one co worker told me he has no money for lunch, yet he went out to lunch with another co worker! I'm sick and tired of trying to be nice and open, and get stabbed in the back. I don't think I am a cruel person. I have a college degree, I work full time, I am a church goer, I never have committed a crime, I care about animals especially and people. During Hurricane Katrina I donated to American Red Cross and the Humane Society. I donate every year to the Humane Society. I give donations at church too! I don't do drugs either! I just want to have friends, but people don't want to give me the time or day. I am always open to all kinds of ideas when I want to hang out with 'friends'. They seem to be happy of my suggestion, but then they just backstab me. It's emotional abuse in a way. I guess it's just the downside of being learning disabled and having autism. :confused: ]]> luvsterriers http://www.ic-network.com/forum/showthread.php?t=66504 http://www.ic-network.com/forum/showthread.php?t=66503&goto=newpost Wed, 08 Sep 2010 15:15:07 GMT any of you able to tolerate yogurts?? I eat minigos but am getting tired of them, and love yogurt with granola and fruit, and am also wondering if it could help with digestive troubles lately due to pregnancy? any input? any of you able to tolerate yogurts?? I eat minigos but am getting tired of them, and love yogurt with granola and fruit, and am also wondering if it could help with digestive troubles lately due to pregnancy?
any input? ]]> General Diet Questions Braedley http://www.ic-network.com/forum/showthread.php?t=66503 http://www.ic-network.com/forum/showthread.php?t=66502&goto=newpost Wed, 08 Sep 2010 14:31:28 GMT Hello everyone. I'm still trying to figure out this diet. Can you please tell me what exactly are "problem ingredients"?

Thanks again,

Rhonda ]]> General Diet Questions rsorenson1 http://www.ic-network.com/forum/showthread.php?t=66502