This is something that I have, I have a severe form of the disease. What I want to know is----is there anyone out there who also has this disease?? I am really cool with it, well, sure it can be a drag, all those getting up at night things and trying to get enough sleep, but I have had it so long that I am used to it, but I have yet to find someone else who has it too. Are you out there? Please let me know. Thanks!
Interstitial Cystitis
- Thread starter Tallchick
- Start date
Hey Tallchick, I feel your pain. I thought I had this because I would get UTI's at the drop of a hat. Thankfully I haven't had any lately. Many people with chronic UTI's may have interstitial cystitis and not know it. Does yours resolve? I would think it would, or do you have it "all the time"? I hope you get some more informative answers. 
Lori
Lori
amy_b
Cathlete
Tallchick,
You absolutely MUST read this book.
http://www.amazon.com/exec/obidos/ASIN/0380787792/104-9999653-9911917
It is called _You Don't Have to Live With Cystitis_ by Dr. Larrian Gillespie. I used to have Interstitial Cystitis as well as chronic recurring UTI's for a few years. Thanks to this book, I no longer deal with this problem ever.
I feel your pain and I hope you are successful at getting rid of it like I was.
Best Wishes!
Amy
You absolutely MUST read this book.
http://www.amazon.com/exec/obidos/ASIN/0380787792/104-9999653-9911917
It is called _You Don't Have to Live With Cystitis_ by Dr. Larrian Gillespie. I used to have Interstitial Cystitis as well as chronic recurring UTI's for a few years. Thanks to this book, I no longer deal with this problem ever.
I feel your pain and I hope you are successful at getting rid of it like I was.
Best Wishes!
Amy
I never resolve. I just have to void 30 to 50 times per day. I see a wonderful doctor (saw four before her who only told me that I needed to try to hold it longer) who finally told me that is what I have. I realize what I have and I am okay with it, and I know that there are others who have it too, and it being an invisible disease, I can't see them. I just want to find someone who also has it. Oh well.
amy_b
Cathlete
By the way, Tallchick,
I do realize that if you've suffered with this for long, you may have read every book out there to no avail. If so, then I'm sorry for your pain! If not, please try the book I mentioned. I do hope you get better.
I hate it when people act like they have a simple solution to a problem that I've researched for years, so I don't mean to do that to you!
Sincerely-
Amy
I do realize that if you've suffered with this for long, you may have read every book out there to no avail. If so, then I'm sorry for your pain! If not, please try the book I mentioned. I do hope you get better.
I hate it when people act like they have a simple solution to a problem that I've researched for years, so I don't mean to do that to you!
Sincerely-
Amy
I too have this...there is a drug on the market called Elmiron, is supposed to take 6 months to take full effect but it is supposed to help with pain and the urination. I havent taken the meds because it is quite pricey 400.00 a month for the rest of your life and I have so many other conditions that I am sick of taking medications. It is very painful and miserable. I would not take your doc's recommedation about holding your bladder, all it will do is aggrivate the nerves in the bladder and aggravate it more. Plus it probably will make you more prone to uti's. It sucks..I hear you!!
Wow, if this isn't timely--I'm about 30 minutes away from my first appt with a urogynecologist because of recurring UTIs. Did following the advice in this book really help you get rid of your UTIs? This problem has been getting worse and worse for me, and it's driving me nuts--though I don't have any of the other symptoms of interstitial cystitis (eg, I don't have to go to urinate constantly and I don't wake up in the middle of the night and have to urinate).
amy_b
Cathlete
Yes, following the advice in the book cured me. I had been to several doctors but they did not give me the kind of comprehensive advice and thoroughly studied research that I got from this book. I had to actually study the book and it was a little bit overwhelming at first because there was so much information and explanation in it, but it did work.
About the book: I have not read it, but I know all about diet etc. I have had a small bladder since I was a child and I have tried Elmiron, the hypodistention (sp?) and nothing works. I can live with it, I have no depression or anything else. But it is nice to know that I am not alone. I don't want anyone else to have it (well, there are a couple of people....) As long as I don't hear "Can't you just wait??". Where can I get this book? I really appreciate all of you answering, this is wonderful. And it is so great to communicate with people who work out on a regular basis. I don't know anyone is person who actually does for more than a week!
I am so sorry you are suffering with this. I got it about ten years ago, and after trying a lot of things, finally got relief through acupuncture and Chinese herbs. I was not sleeping at night, and basically had no life. I was amazed at how quickly and thoroughly those two remedies worked. Good luck to you.
--Ann
--Ann
amy_b
Cathlete
Hello again,
I'm not a sales person for this book or anything. ;o) However, it is much more than diet. It fully explains about acidity of the urine, how the muscles work, flow meters, how to know if the bladder is fully emptying, sex positions, tampons, infections and their effects, 24 hour remedy to neutralize the acid and thus reduce the pain so you can think straight about the solution, exercise, surgical explanations, self-help questionaires. There were several "small" things that I changed to help the situation, which ended up making a big difference.
Some of the chapters in the book were medically technical and at first overwhelming. However, I just kept re-reading it until I felt I understood the material and then I was able to make the necessary applications to my own situation and have more educated dialogue with my own uro-gynecologist.
You can get the book at Amazon, obviously, or I got mine at Barnes and Noble.
Best wishes again!
Amy
I'm not a sales person for this book or anything. ;o) However, it is much more than diet. It fully explains about acidity of the urine, how the muscles work, flow meters, how to know if the bladder is fully emptying, sex positions, tampons, infections and their effects, 24 hour remedy to neutralize the acid and thus reduce the pain so you can think straight about the solution, exercise, surgical explanations, self-help questionaires. There were several "small" things that I changed to help the situation, which ended up making a big difference.
Some of the chapters in the book were medically technical and at first overwhelming. However, I just kept re-reading it until I felt I understood the material and then I was able to make the necessary applications to my own situation and have more educated dialogue with my own uro-gynecologist.
You can get the book at Amazon, obviously, or I got mine at Barnes and Noble.
Best wishes again!
Amy
Dear Amy,
I am waiting for the book but I am wondering how severe you are. My doc says that I am the most severe of patients that she has and that her other patients go into into a phase where they have no symptoms. I would be thrilled to go without symptoms for one hour! Have you had it for awhile and then have it away or were you like me going all day and night without any relief? Thanks for reponding to this, you actually understand and I appreciate this!
I am waiting for the book but I am wondering how severe you are. My doc says that I am the most severe of patients that she has and that her other patients go into into a phase where they have no symptoms. I would be thrilled to go without symptoms for one hour! Have you had it for awhile and then have it away or were you like me going all day and night without any relief? Thanks for reponding to this, you actually understand and I appreciate this!
Dear Ann,
Did you have it for a long time? I have had small bladder problems since I was a child and pain since I don't know when so I wonder if this will help me. If you have had it for years, can you tell me what herbs helped you? I also appreciate your helping me too! Thank you!
Did you have it for a long time? I have had small bladder problems since I was a child and pain since I don't know when so I wonder if this will help me. If you have had it for years, can you tell me what herbs helped you? I also appreciate your helping me too! Thank you!
amy_b
Cathlete
Hello again, Tallchick,
I definitely would not assert that my problems are equal in severity to yours. It sounds like you have more years of dealing with it that I did. However, my history was that as a child, I had some bladder issues and because of that, I started drinking less water, so that I wouldn't have to go as much. Due to that, I had a few other problems. When I got married, the problems became pretty severe (constant pain, constant urgency, frequent UTIs, ongoing infection, reduced bladder lining often bloody, thus blood tinged urine) for about 2 years. After that, I found this book. My problems were reduced in about 3 months time and over the course of the next year or so, they lessened to the point of not really being a problem. Since then, I have been pregnant 4 times. Any time a flare-up was threatening, I would refer back to the book and it never reached a crisis again. After all the pregnancies, I opted for a surgery to fix a couple of things, which included a repositioning of the bladder to tack it up a little bit higher, which decreased the frequency of the urge to void. Now, the only problems that I have are that about the half the time, I have to get up once during the night and most every workout requires a bathroom break, but otherwise, I would say I am "normal" and I am so thankful for that. I can make it through meetings and church and even road trips. I wish that it were a fixable problem for everyone because I know how much it affects your life, and hopefully you will get some improvement at the least.
Amy
I definitely would not assert that my problems are equal in severity to yours. It sounds like you have more years of dealing with it that I did. However, my history was that as a child, I had some bladder issues and because of that, I started drinking less water, so that I wouldn't have to go as much. Due to that, I had a few other problems. When I got married, the problems became pretty severe (constant pain, constant urgency, frequent UTIs, ongoing infection, reduced bladder lining often bloody, thus blood tinged urine) for about 2 years. After that, I found this book. My problems were reduced in about 3 months time and over the course of the next year or so, they lessened to the point of not really being a problem. Since then, I have been pregnant 4 times. Any time a flare-up was threatening, I would refer back to the book and it never reached a crisis again. After all the pregnancies, I opted for a surgery to fix a couple of things, which included a repositioning of the bladder to tack it up a little bit higher, which decreased the frequency of the urge to void. Now, the only problems that I have are that about the half the time, I have to get up once during the night and most every workout requires a bathroom break, but otherwise, I would say I am "normal" and I am so thankful for that. I can make it through meetings and church and even road trips. I wish that it were a fixable problem for everyone because I know how much it affects your life, and hopefully you will get some improvement at the least.
Amy
icklemoley
Cathlete
I have IC. I have horrible pain down my Ureatha and Urge to pee every 5-20 minutes of every day. It is very very upsetting.
At times it makes me want to sit down and cry.
Sometimes i have the urge to pee but can handle it. Othertimes the urge is sooooo strong that i cannot hold it and have to go what seems like all the time.
I have just had my urine pH tested and its sooooooooo acid that the Dr said it was scary! He said that if i get it more alkaline it will really really help.
What is this 24 hour remedy to neutralize? That was mentioned in this thread by Amy. I would like to hear about this. Also the reviews on Amazon state a food supplement that can really help. If you can i would really like to know what this is. Thank you again.
Any help would be so helpful.
Thank you all.
At times it makes me want to sit down and cry.
Sometimes i have the urge to pee but can handle it. Othertimes the urge is sooooo strong that i cannot hold it and have to go what seems like all the time.
I have just had my urine pH tested and its sooooooooo acid that the Dr said it was scary! He said that if i get it more alkaline it will really really help.
What is this 24 hour remedy to neutralize? That was mentioned in this thread by Amy. I would like to hear about this. Also the reviews on Amazon state a food supplement that can really help. If you can i would really like to know what this is. Thank you again.
Any help would be so helpful.
Thank you all.
amy_b
Cathlete
Hi, Icklemoley,
I've been looking around for my book and I can't seem to locate it right now. However, the acid neutralization is something I can remember pretty well and it does help with the pain TREMENDOUSLY! I would urge you to both get the book and find a uro-gynecologist that will work with you.
24 hour neutralization:
1- dissolve baking soda into 8-10 ounces of warm water. Keep adding baking soda until the water won't dissolve any more. Now the yucky part- drink it. You'll thank me later!
2- 2 hours later take 2 calcium carbonate tablets (such as Tums) plus drink water
3- 2 hours later, take 2 more calcium carbonate tablets and drink more water
You should be feeling relief at the point. Contiinue to drink water.
This is from my memory, so please check your library or book store for a much more detailed explanation that tells you WHY you do this and how often. I have done this any time I sensed a flare up and it works great and alleviates pain. I have also changed my drinking habits to water only.
There is a list of foods of that are highly acidic (including cranberry juice and most other juices). You would want to avoid those things, esp. when you are trying to alkalanize.
Here's to your health!
Amy
I've been looking around for my book and I can't seem to locate it right now. However, the acid neutralization is something I can remember pretty well and it does help with the pain TREMENDOUSLY! I would urge you to both get the book and find a uro-gynecologist that will work with you.
24 hour neutralization:
1- dissolve baking soda into 8-10 ounces of warm water. Keep adding baking soda until the water won't dissolve any more. Now the yucky part- drink it.
You'll thank me later!2- 2 hours later take 2 calcium carbonate tablets (such as Tums) plus drink water
3- 2 hours later, take 2 more calcium carbonate tablets and drink more water
You should be feeling relief at the point. Contiinue to drink water.
This is from my memory, so please check your library or book store for a much more detailed explanation that tells you WHY you do this and how often. I have done this any time I sensed a flare up and it works great and alleviates pain. I have also changed my drinking habits to water only.
There is a list of foods of that are highly acidic (including cranberry juice and most other juices). You would want to avoid those things, esp. when you are trying to alkalanize.
Here's to your health!
Amy
icklemoley
Cathlete
Amy,
Thanks so so much.
I don't get pain as in burning when i pee, just a horrible need to urinate all the time. I really hope this helps.
Thank you so so much.
I'm trying hard to alkalize my body, but it's hard at present because i'm so acidic.
Thank you again.
Thanks so so much.
I don't get pain as in burning when i pee, just a horrible need to urinate all the time. I really hope this helps.
Thank you so so much.
I'm trying hard to alkalize my body, but it's hard at present because i'm so acidic.
Thank you again.
amy_b
Cathlete
Hi, again,
I can't really do justice to the topic here on this forum, but I wanted to let you know that this will help with both kinds of pain- the burning urethra type of pain, but also the kind of pain that is more generalized in the lower abdomen.
You're welcome and I hope you get some relief soon.
Amy
I can't really do justice to the topic here on this forum, but I wanted to let you know that this will help with both kinds of pain- the burning urethra type of pain, but also the kind of pain that is more generalized in the lower abdomen.
You're welcome and I hope you get some relief soon.
Amy