Hi all, Im new here....

[danisi13]

Hi everyone,

Im a new member, and this is my first post. I found this forum the other day while researching IC on the net. There seems to be such great info on this site. Also, its comforting to know that there are people who know exactly what you are going through. I feel so alone. This is going to be a long story....

I am 29 yrs old, and myy struggle with IC began about (give or take) 5 yrs ago. It was a slow progression....Starting mostly with frequency and urgency, and slowly getting worse as time went by. I went to see a specialist regarding my problems about 1 yr after they started. He told me that based on my symptoms, most likely I had IC, but he wanted to do a potassium sensitivity test first to make the official diagnosis. Well, I chickened out (should I mention I am a nurse, and I am the WORST patient ever). I never went back to him.

Fast foward, 1 more yr. of suffering, I sought out another urologist who did some urodynamic testing, and confirmed that there were many problems. He was concerned about my dysnergia and delayed bladder emptying, so he sent me for a MRI to rule out any neurological disorders. I was SO SCARED. He also prescribed the Oxytrol patch, along with Ditropan. I could not tolerate the side effects, and the meds did not help at all with my symptoms, so I stopped. The MRI was negative (thank God).

2 more yrs went by quickly, and again, my symtoms got worse. So bad, that I was waking up 5-6 times per night to urinate, and probably making about 15-20 trips to the bathroom during the day. I would feel such an urge all the time, my bladder would feel so full, yet only a very small amount would come out each time I went. And the pain in my pelvis was getting so bad, it was almost constant. I suffered immensely. Finally this yr I figured enough was enough.

I went to see a specialist who was reccommended to me...A uro-gynecologist that works out of the same hospital I work at. He did some initial testing, including some urodynamic studies, and basically confirmed what the last Dr. said. He scheduled me for the potassium sensitivity test, which basically confirmed the diagnosis of IC. He started me on Elmiron, and I have been taking that for the past 5 months. I really didnt feel the Elmiron was helping a ton, so I sought out (yet) another opinion of another physician in the area. I brought my records with me, and he didnt seem concerned with them. He said, bottom line was that the next treatment if I am not getting relief with the Elmiron would be a hydrodistention procedure. This was 2 wks ago. I then stopped my Elmiron (dont know why, he just made it seem like I should have gotten relief by now if I was going to get it from this med). And the last 2 wks have been HELL. I have been in such severe pain since I stopped. I basically think that the Elmiron must have been helping a bit, because although it doesnt take the pain/frequency/urgency away, it at least makes it a bit more tolerable. So, I started taking it again 2 days ago, which was what my doc reccommended.

If you're still reading this *really* long post I thank you so much. I am just at the end of my rope. Being a nurse, I think of all the horrible things. Could the docs be missing something? Could these problems be related to something else? I dont know. I am so scared that I may have to live with this chronic disease. Its horrible. I am in constant pain, and feel so alone and isolated and depressed.

Thank you for listening to my story.

-Dani

[Briza]

Not to worry, you're not alone :hi: glad you found us:)
Please take heart that there are MANY other meds to try that may very well alleviate your symptoms. Most of us do find a combo of meds that work for us and we are able to live very normal lives. Not all of us are on Elmiron, and most of us have been to many many drs and tried many combos of meds before finding what works best for us.
If you haven't done so already, you should probably try the IC diet...it seems to be one of the most important things for most of us in controlling our symptoms, as well as drinking lots of water to keep the urine diluted.
Best wishes,Bri:)

[bluetart]

Hi dani,

I am glad that you are getting things taken care of by seeing a doctor. There are many more different treatment options than just a hydrotistension, but it happend to give me some relief after I healed from it. The elmiron helped me also... atleast I think it has. I think it can take several different treatment combos to find the best results. If you ever want to talk feel free to private message me :smile tee.

[danisi13]

Thank you so much, ladies. This disease is really starting to affect EVERY aspect of me. I am finding it very difficult these days to even get out of the house (except to work, which is also becoming very hard for me to get through my rigorous 12 hr shift). I feel like maybe I should add an antidepressant to my regime at this point, b/c besides possible helping the IC it will help me psych wise too. I just feel like I am so young to be suffering so much, yet I know there are people who are dealing with much worse. But, I have to say, this is pretty darn bad!
I am married to a wonderful, supportive man (we will be celebrating our 1-yr anniversary next month), but I know this is affecting him so much as well. Its just so hard.

How do you private msg.? I am so new... :)

[danisi13]

Also, I wanted to add, that I have already started to modify my diet a bit. Although I have always considered myself to be a pretty healthy person (my diet is decent, I exercise regularly). I have cut out all soda (love my diet Sprite), but I have yet to cut out red wine and coffee- my 2 favorites!!! I really dont find any correlation between my diet and my symtoms- they seem to be there all the time- but I know I should be keeping a food/symptom diary to see if there are any connections....

[JanL]

Welcome! :welcome: This is a wonderful site and I have learned so much from it. I, too, have a medical background (cytotechnology) so I understand your panic. Sometimes we can know too much for our own peace of mind, can't we? First thing, try to calm down. Stress is a big trigger for most people. I went through a long, long process before being dx'd so believe me when I say I can empathize with your frustration. I thought that I would never be out of pain, but I have come so far. I have had a really good summer--usually I curl up in a ball and die during the summer. I think this was because I finally got a good doctor who gives me the meds I need to be able to deal with flares before they reach a full blown nightmare and have taken more control over using my bag of tricks when I first start to flare. My first line of advice would be to find the top IC specialist in your area and see him/her. You might want to ask about elavil. It is usually one of the first things given for IC. It is a low dosage, but it helps you to sleep and helps with frequency. You may already be on it. The hydrodistentiions help some people, but there has been some new info out about it possibly doing more damage (Jill had an article about it) so investigate this before agreeing to it. There are a lot of different things that work for different people. You just have to discover what works for you. You probably already know about the IC diet and there are lots of other great tips on this site. Hang in there and remember that we are always here to give you a hug. I am not on here a lot lately because I recently started a full time job (we never thought I would be able to work again--see you can get better) and I am having to try and get more rest. Feel free to pm me anytime. I may be a little slow answering, but I will answer. You are going to be ok. Take a deep breath and try to relax. Remember also that your case will probably not be identical to anyone else's so don't panic and think the worst automatically. Sorry, I did not mean to sound so preachy. I know you are hurting and I just want you to feel better.

Hugs,
Janice

[leelee88]

Hello and :welcome: To the ICN!!!

You know Elmiron can take up to 6 months or even longer to work or feel its full benefits! Also I highly recommend the IC diet. Another thing there are a lot of differant meds out there that can help with IC. There is a link on my Signature to the Parient Handbook. You can find a lot of helpful info in it.. Again welcome and always know you are not alone! Please if you need anything just ask.

[danisi13]

Welcome! :welcome: This is a wonderful site and I have learned so much from it. I, too, have a medical background (cytotechnology) so I understand your panic. Sometimes we can know too much for our own peace of mind, can't we? First thing, try to calm down. Stress is a big trigger for most people. I went through a long, long process before being dx'd so believe me when I say I can empathize with your frustration. I thought that I would never be out of pain, but I have come so far. I have had a really good summer--usually I curl up in a ball and die during the summer. I think this was because I finally got a good doctor who gives me the meds I need to be able to deal with flares before they reach a full blown nightmare and have taken more control over using my bag of tricks when I first start to flare. My first line of advice would be to find the top IC specialist in your area and see him/her. You might want to ask about elavil. It is usually one of the first things given for IC. It is a low dosage, but it helps you to sleep and helps with frequency. You may already be on it. The hydrodistentiions help some people, but there has been some new info out about it possibly doing more damage (Jill had an article about it) so investigate this before agreeing to it. There are a lot of different things that work for different people. You just have to discover what works for you. You probably already know about the IC diet and there are lots of other great tips on this site. Hang in there and remember that we are always here to give you a hug. I am not on here a lot lately because I recently started a full time job (we never thought I would be able to work again--see you can get better) and I am having to try and get more rest. Feel free to pm me anytime. I may be a little slow answering, but I will answer. You are going to be ok. Take a deep breath and try to relax. Remember also that your case will probably not be identical to anyone else's so don't panic and think the worst automatically. Sorry, I did not mean to sound so preachy. I know you are hurting and I just want you to feel better.

Hugs,
Janice

Hi Jan,

Thank you so much. The dr that I most recently saw for my 2nd opinion 2 wks ago is supposedly the top specialist in my area. He did mention other meds (antidepressants) that he can add to my regime, so I may ask him about that next time I see him. I am confused as to whether I should have the hydrodistention procedure or not- I dont know enough about it. Part of me thinks maybe I should just continue on Elmiron and try some more diet modification, maybe Elavil too, and see how that goes? Im not sure.
Thank you so much for your post.

[danisi13]

Hello and :welcome: To the ICN!!!

You know Elmiron can take up to 6 months or even longer to work or feel its full benefits! Also I highly recommend the IC diet. Another thing there are a lot of differant meds out there that can help with IC. There is a link on my Signature to the Parient Handbook. You can find a lot of helpful info in it.. Again welcome and always know you are not alone! Please if you need anything just ask.

Thank you Ronda!! I know the Elmiron takes a while to work- I dont know why I just decided to stop it....I guess it is helping a bit, b/c the past few wks I was not taking it I was in terrible pain!!! Its been horrible!! Im definitley going to check out the handbook in your sig. Thank you so much for your response!

[NewLife]

Hi Dani! Welcome!

I would definitely cut out coffee and red wine. Until 3 weeks ago I could not imagine my life without coffee, but then I was diagnosed with IC and now it's a whole different life. The diagnosis really motivated me to be kind to my body. I stopped missing the coffee within 2 days of quitting. As for red wine--I think it caused my IC. Cut that out as well before I was diagnosed. Believe me, soon you won't even notice your dietary restrictions! I started the IC diet a month ago and only felt limited once when I went to a meeting where they provided lunch and left hungry because I could not eat much. Other than that, I think this is an easy diet and I definitely see the benefits.

In any event, good luck and don't be scared. Stay positive and your body will heal!

[Briza]

Sad to say, but yeah, the coffee and red wine probably need to go Those are major classic symptom triggers and both very acidic:( I slowly decreased my coffee intake and now don't even want it anymore. As for the hydro, that will be up to you if you want to go that route. You have already been diagnosed so you could just continue with the Elmiron and hopefully try Elavil (it may be the antidepressant your dr was talking about) and there are other standard meds to try. Not everyone gets symptom relief from the hydro, and most people do have increased pain and other symptoms initially after the hydro before they return to either their pre hydro symptoms, feel better, or as some report, worse than before the hydro. So it really is up to you whether you want to undergo this surgery. Whether you have the hydro or not, you will still have to find the right combo of meds/treatments that work for you longterm. I definitely would not want to feel like a dr was making me undergo this procedure in order to receive other meds that could help with symptoms, especially if I had already been diagnosed and showing improvement with Elmiron. Best wishes:)

[SharonA]

Dani...:welcome: to the ICN... :) We all know and understand the things you are going through because we have or are still going through so many of the same things. I do want to tell you that there is hope and there is hope. It is very possible that, once you discover what works for you, you will be able to have a very good life despite having IC. IC is not something any of us would have wanted to live with, but it can be done.

There really isn't much for me to add to all the wonderful replies you have already received. I do, however, want to encourage you to begin to follow the IC Diet very closely. There is a section in the IC Diet information about the elimination diet. It does a great job explaining the reasons to try it. It may seem very restrictive at first, but that is because you need to be able to identify what diet items might be causing diet triggers, which, in turn, increase IC symptoms. Don't panic when you read this information. The elimination diet is not meant to be followed forever. Here is the link that will take you directly to that portion of the Diet. http://www.ic-network.com/diet/eliminationdiets.html

It is personal testimony time...I have been taking Amitriptyline (Elavil) 25mg every evening for several years. It is the only med (except for Prelief) I take for my symptoms. It has enabled me to live a pretty normal life which I once thought I would never be able to experience, again.

I am very glad you found us. We will try to help you as best we can. Please feel free to come here, join in the discussions, ask questions, unload, and get to know us.

:):):):):)

[elamar]

these two meds are anti-spasmodics which might help calm down your feelings of urgency. They also santize the urine, so it turns your urine blue! I take utira-c which is the generic for urelle. Many find these meds quite helpful. Maybe you can get a prescription for one of these called in while you wait for your next appt. Ditropan xl worked well for me, but many can't handle the side effects. Good luck to you. There is no generic for prosed that I know of, so urelle generic would be the most cost effective option. I tried both and never noticed a difference.

[VickiB]

Hi Dani and :welcome:

How do you private msg.? I am so new... :)

Two ways. If it's someone on this thread simply click on their user name on the left. You'll see a drop-down menu appear and one of the choices will be "Send a private message to....". Click on that and you'll be ready to go.

Another way is up in the right hand corner of the page where it says 'Welcome, your name", and a bit below it there's a link for private messages. Click on that. On the left side of the page that comes up you'll see a menu with "Send new Message" about half way down the list of options. Click on that. It'll give you a page similar to what you see when you submit a post on the forum except that you will need to fill in the recipient's User name.

Hope this helps.

Vicki

[danisi13]

Thank you so much Briza, Sharon, Elamar, and Vicki. You are all so helpful.

Well, I called my MD today and asked for something for pain, frequency, urgency, etc. I did mention Elavil to the nurse, and she said she would speak to the MD and call me back. Well, he did end up calling me in a prescription for Elavil. I am glad b/c so many of you have had success with this med, so I am hoping it will help me too, along with the Elmiron. I think I am going to wait on the hydrodistention procedure, and see what happens.

Im just so upset, b/c the last 2 wks I was off the Elmiron I was in SO MUCH PAIN, I cant even describe, but if anyone can understand, its you guys. It was just such a confirmation for me how nasty this illness is, and I wonder if it will ever go away? Will I have to take meds for the rest of my life? What is going to happen when my husband and I want to have a baby (which we were looking foward to around this time next yr). With my condition as it is right now, it just doesnt seem possible. So that is what is the most upsetting to me.
I guess I just have to take one day at a time.:confused:

[Briza]

It seems like many times over time with the right combo of meds, diet, and treating our bladders kindly that there may be a reduction in the need for meds, especially as you figure out which meds help you for which symptom and when to take each med. But having to take meds forever is definitely a big worry for all of us when we first start down this road. Nobody likes the idea of that! I have been fortunate that once I got my symptoms under control I rarely needed all of my meds all the time, had many days with mild or no symptoms, and currently have been in remission, no meds needed at all, since February. :) I still watch my diet for my main triggers, but they are few, and my diet is not that restritive. It does take time, patience, and perserverance, cooperative good doctors, I'm sure that most will agree, but most of us do get to a much better place where IC is just a small part of our lives and does not rule our lives. I hope the same for you! Hang in there. Note on the Elavil: most drs it seems say to take it at bedtime, but for many of us this can cause morning groggies, so I and many others take it a few hours before bed, or around dinnertime. When I take it earlier in the evening it doesn't knock me out, but once I fall asleep I stay asleep and that has helped me immensely with nocturia, frequency, and urgency. Also, if you do still feel groggy in the morning, this side effect should go away with time. If you don't mind my asking, do you know what mg your dr prescribed?
Best wishes, hope any of this helps,Bri:)

[TeriCH]

Hi,
I know this was mentioned in above posts and I believe you said your dr. rxed you a prescription of Elavil. It has been a lifesaver for me. I can say it is the only drug that really worked for me and it worked quick, I felt relief the first day I took it. Just know it does have some side effects, make sure you take it at night b/c it will make you so tired until your body adjusts.

I understand the coffee and red wine, I was drinking coffee everyday, before my symptoms came back in May. I took myself completely off coffee and soda, and I have to say I did feel a difference, in the past I never felt the diet made a difference, but now I am a believer.

Once Elavil started doing its thing (I've been on for about a month), I started slowly trying soda (rootbeer only, no caffiene). I then tried iced half/calf lattes, but only with Prelief (you can find it in the supermarket), it takes the acid out of foods/drinks. So far so good. I think its best only to start reintroducing foods/drinks once your bladder calms down and know that they may trigger a flare. Good Luck, I hope the Elavil will help you!:)

Teri

[danisi13]

It seems like many times over time with the right combo of meds, diet, and treating our bladders kindly that there may be a reduction in the need for meds, especially as you figure out which meds help you for which symptom and when to take each med. But having to take meds forever is definitely a big worry for all of us when we first start down this road. Nobody likes the idea of that! I have been fortunate that once I got my symptoms under control I rarely needed all of my meds all the time, had many days with mild or no symptoms, and currently have been in remission, no meds needed at all, since February. :) I still watch my diet for my main triggers, but they are few, and my diet is not that restritive. It does take time, patience, and perserverance, cooperative good doctors, I'm sure that most will agree, but most of us do get to a much better place where IC is just a small part of our lives and does not rule our lives. I hope the same for you! Hang in there. Note on the Elavil: most drs it seems say to take it at bedtime, but for many of us this can cause morning groggies, so I and many others take it a few hours before bed, or around dinnertime. When I take it earlier in the evening it doesn't knock me out, but once I fall asleep I stay asleep and that has helped me immensely with nocturia, frequency, and urgency. Also, if you do still feel groggy in the morning, this side effect should go away with time. If you don't mind my asking, do you know what mg your dr prescribed?
Best wishes, hope any of this helps,Bri:)

Thank you so much, Briza, for your post!

I picked up my prescription today, my doc prescribed 10mg once per day. I know that that is really a low dose but I guess you are supposed to start with a low dose, and then titrate up as needed. Im going to take my first dose tonight, so we'll see how it goes.
Thanks again!

[danisi13]

Hi,
I know this was mentioned in above posts and I believe you said your dr. rxed you a prescription of Elavil. It has been a lifesaver for me. I can say it is the only drug that really worked for me and it worked quick, I felt relief the first day I took it. Just know it does have some side effects, make sure you take it at night b/c it will make you so tired until your body adjusts.

I understand the coffee and red wine, I was drinking coffee everyday, before my symptoms came back in May. I took myself completely off coffee and soda, and I have to say I did feel a difference, in the past I never felt the diet made a difference, but now I am a believer.

Once Elavil started doing its thing (I've been on for about a month), I started slowly trying soda (rootbeer only, no caffiene). I then tried iced half/calf lattes, but only with Prelief (you can find it in the supermarket), it takes the acid out of foods/drinks. So far so good. I think its best only to start reintroducing foods/drinks once your bladder calms down and know that they may trigger a flare. Good Luck, I hope the Elavil will help you!:)

Teri

Hi Teri!

Thank you so much!

I made a conscious decision today that I really need to make some major diet modifications....I dont eat unhealthily, but I really need to cut out the coffee and red wine (which completely saddens me- they are my 2 fave things)!! I dont know how I am going to do it, but I think I have no choice. Wish me luck!
Im going to take my first dose of Elavil tonight. Its encouraging that this med worked for you. Im hoping that it does the same for me!!!

Thanks again!