Interstitial Cystitis

[happyjac]

For the last 2 1/2 years I have been in pain in my pelvic area and after urinating I hurt so much. The funny thing is my family doctor kept treating me for UTI's even when nothing showed up in my urin samples. Finally I spoke with my gynecologist about my pain and was ordered a test where potassium was placed in my bladder (boy did that hurt). I was finally diognosed with IC and was given Elmiron. I am glad to know what I have, but I just wanted to know if anyone has had success with this pill?? I am now on a strict diet and can feel some relief ( just started on the pill monday of this week). I do not like taking medicine, but if this will help I am all for it because I have not been normal for a while now. If anyone has another way of releiving the pain I would like to hear from you as well.
Happyjac

[AChase]

Ive yet to try Elmiron, but Im sure Ill be given it on Thursday. I too after 2 1/2 years was finally given a DX of IC. I lost my career in the Air force becuase the docs didnt want to try and treat me. Theyd rather hand me Ibuprofin and say see ya later. I found out April 25th that I have IC and was given hydroxyzine 10mg. Tad bit of relief there for me, but not a lot. A friend of mine has IC too and takes both Elmiron and Hydroxyzine. She says that shes had relief from pain being on both pills.
Its a long road, and neither Elmiron or Hydroxyzine will start to work over night. Take it like youre supposed to and give it time. Not every med works for every person but a lot have found relief from them and from changing their diet. Good luck

[happyjac]

Thanks! I needed to hear some feed back and I hope that you will soon feel better! I am missing a lot of foods that I love, but I am also out of some of the pain by not eating them! I just joined this forum and could not believe how common this disease is. I was saddened by a lot of the stories. I am 40 years old and most of the people who are writing that they have this are a lot younger than me. Good luck to you as well.

[AChase]

I know how you feel. When I posted on April 25th after my Surgery I was looking for some type, any type of feed back. As you can see Ive yet to receive any on my post. Its hard having a condition that friends and family know nothing about. You try to explain and they try to relate or say "Oh I know how you feel" yet in reality they dont. I dont know how severe yours is but I know for me I can not stand or walk for too long without hurting. Its heart breaking when Im outside with my dogs and I know they want to play longer and I simply cant do it. little buggers run faster than me now! lol When I was in the military I could run a mile and a half in 11:22. now Im lucky to run down the block. Diet change hasnt been suggested for me, but at the same time Ive yet to know any one food that triggers the pain. Again maybe its something my doc and I will talk about Thursday at my appointment.
Im one of those that is younger than you. Im only 21, but you know what? My life did have to be altered for this condition, but its not changing my life or who I am. I still get to come home to a man that loves me, dogs that want be with me regardless of if I can stand or not. Ok so I cant go running a mile anymore, but I can sure as hell still be me.
Im rambling I know. Maybe for my own benifit or maybe it makes you feel a little better. All I know is that yes Im 21 and I have IC but dammit I still have the rest of my life a head of me and before I know it Ill have my masters in Social Work and be doing what I love. IC or not. =)

[happyjac]

Well today is Thurs. and I hope you had good luck with your Doctor's appointment! I have a good man at home too! He has been so understanding the past 2 years. I have had times where I can't sleep from it. My symtoms get worse at night after I urine then lie down, and if I am standing long periods at a time. I have found a web sight called www.icnsales.com It has a lot of stuff to look at. Maybe you can find info for yourself from it. I am glad to have someone to vent with....I understand about what you said when family and friends just don't grasp the problem we are having. Take care and again good luck today.

[AChase]

Sorry I didnt reply sooner, the web site was being stupid and wouldnt load.
Thursday appointment was alright. he gave me a second medication but I got Amitriptyline. Once a day med at night since it causes drowsiness. It does exactly that! lol But its all good I havent been sleeping well so this helps with that.
i also got the list of what to and what not to eat. Good gawd they might as well tell me not to eat! lol At least I have a friend that grows veggies so I dont ahve to give up tomatos! lol Whats a burger without tomatos?
Ive gotten lucky enough that my pain doesnt keep me from sleeping. When I hurt and cant get rid of the pain all I want to do is sleep.
Ill take a look at the website, Thanks.

[happyjac]

Yep I thought the same thing!!! What is left to eat. We have a small garden and lot's of tomato plants and I do love a good tomato sandwich in the summer time!!! I have cut out chocolate and caffeine that has help oh and onions. I love them too!!:( I have done a little bit more research and found something called prelief tablets. I am so desperate to find some relief! Anyway maybe you can check out some websites about it. I ordered some on [moderator note: website address has been removed] and I will let you know how it goes. I really don't want to take the elmiron for ever!! I may have too, but I hope to find other ways of controlling this stuff! Getting back to the prelief tablets on the [moderator note: website address has been removed] there is a testimonial site where people say it really helps with the pain and that you can take the tablet then eat anything. I know it sounds too good to be true, but every now and then I do want to eat something I like!! I am trying not to let this get me down!!!! But it is hard when your hurting all the time! Hope your new meds help you!!! And good luck w/ the diet........If you can find something to eat!! lol!

[AChase]

Good gawd! I finally am able to reply to you! Sorry the web site has not been wanting to load for me. Let me know how those pills go for you. I know the two Im on now have helped, the past week Ive been forgetting to take them because Ive been in the go go go mode. My dog had surgery last friday on his knee and so Ive been having to chase my two around making sure the one who had surgery doesnt do anything hes not supposed to and the other doesnt try to wrestle with him. Crazy week. The flare up I had though was enough to jolt me back and remind me to start on the meds again lol

Anyway, in case the silly web site decides not to work for me again, youre more than welcome to email me at [moderator note: e-mail address has been removed] if youd like. Always enjoy having people to talk to =)

[giapooh]

Hi, I was just diagnosed 3 months ago and am on Elmriron and pain meds and an occasional dose od pyridium to numb me for 5 days because the pain gets so bad at times. I have to catheter myself all the time! I follow the diet strictly as well and drink distilled water instead of tap. Something about the minerals in the tap water that make distilled better for you, plus a tablesppon of baking soda everyday to help relieve bladder pain.
Also, if I were you, I would visit the website for The interstim Implant or medtronics. I have it really bad...I don't know how bad yours is but I am in excruciating pain daily and I don't sleep. I take a pain med every 6 hours on the dot. I've lost hours at work. Anyway, It happens in 2 parts. The first part is a test part where they insert a tube through your upper buttock and leave it there for 10 days with a battery pack on your side. If you feel better, which you should within a few days, they schedule you for the implant which stays in for approx. 8-10 years and then replaced again, in your upper buttock. It of course it doesn't cure it because we know it doesn't get cured but it does has an 805 success rate in reducing symptoms. I can't urinate. I urinate like I'm in labor the nurses have told me. I feel like I'm living in hell with constant back and bladder pain and having to catheter. Anyway, I would sign up, fo free, on the interstim website and they will send you a free DVD with a bunch of info.
Having this changed my life.

[giapooh]

Please please go to a Urologist. They know much more than a gyn does. trust me. Been there, done that.