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Interstitial cystitis update TESTIMONIAL

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Interstitial cystitis update

Posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

I wrote in early March and just wanted to give an update on my progress and ask a few questions. March 1st I was diagnosed with urethritis and have been on Macrobid. The Uro/Gynie saw inflammation in my bladder wall as well and told me he can't rule out IC. I do know I have it (urgency and bladderache are my 2 main symptoms) and have learned to accept it because I know I will beat this pain! I am now taking Elmiron and Calcium Citrate (this has really helped eliminate the burning pain).Also, get acupuncture twice a week since January which has also helped me to relax because I am a chronic stress ball. I am 31, work and have a one year old! First off, I want to thank you Dr. Stoll for this site. It is the only thing that has kept me going the past month dealing with this horrible problem. After reading your site I ordered the SR workbook and began deep breathing and kegal exercises. Along with doing self reflection and decided as of June to quit my job (I am a Special Education teacher and my job is intense). I rather enjoy life then deal with juggling everything. Within a week I was feeling 90% better. Then I thought the disease was gone and started testing the waters with introducing foods that would of caused a flare the week prior. Well, I still seemed good for about 6 consistent days. Then it hit me again. The bladder pain and more frequency. I was so bummed until I went back on this site and again began SR and now have hope once again. This pain that has struck again forced me to make significant life changes. I began working out and going in the steam room trying to sweat out impurities. My question to you is that I know my period is due around April 1st so I am definitely PMSing. Last month I recall having more pain before my period (a lot more.) My hope is that once I get my period I will get on the right track again. Is there anything during this time that would help my IC PMS pain?? I am not on the pill due to having difficulties getting pregnant and had to take fertility drugs. Anyway, my doc said the pill may help this. I wanted to ask you how you feel about the pill possibly helping IC - I looked on the BB for IC and did not see any comments about this. This pain is so annoying and frustrating - Also I am so much more anxious when I am PMSing. My other question is could exercise make symptoms worse? I began slow with speed walking and a little jogging along with stretches. Thank for all you do - I can't express my thanks! Tara



Re: Interstitial cystitis update

Posted by linda [2248.1351] on March 28, 2006 at 09:36:24:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

I believe I've read that estrogen helps IC. Any exercise that "jars" the bladder such as running always causes me pain. Sometimes walking will irritate my IC. Have you tried the website: ic-network.com



Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 28, 2006 at 13:56:51:

In Reply to: Re: Interstitial cystitis update posted by linda [2248.1351] on March 28, 2006 at 09:36:24:

Yes, but I find the website very depressing. This site is the only one allow myself to go on. I got depressed with the other sites on IC. This was the only positive site that had good outcomes. Have you had any relief of your IC symptoms from skilled relaxation? Are you on the pill and if so does it seem to help? Thanks!

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Re: Interstitial cystitis update

Posted by
Jill [4685.2287] on March 28, 2006 at 14:31:50:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

Hi Tara,
There are some positive websites like this one for IC where others have taken control of their health and begin to heal. Check out the IC Puzzle Group and the IC Hope Message Board. You will find much support and advice needed for your journey to healing...You can get better in spite of what conventional doctors will tell you...

Jill



Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 28, 2006 at 15:07:36:

In Reply to: Re: Interstitial cystitis update posted by Jill [4685.2287] on March 28, 2006 at 14:31:50:

Thanks Jill I will. Do you have IC and if so do you have it under control??



Re: Interstitial cystitis update

Posted by Juli [2364.1351] on March 28, 2006 at 18:09:48:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

I had IC on and off for many years, into my mid-late thirties. Stress definitely can bring it on. Very warm baths with 2 cups of Epsom salts seems to help a lot and the best thing that helped me was a heating pad, just lay it on your bladder.

I also got great relief from D-Mannose by Uti Edge, you can google it. That stuff is amazing, read about it. Even though it is for bladder infections involving E Coli (90% of all bladder infections), it somehow stops the IC burning Get some and try it! Also, alcohol and citrus would aggravate mine, and high doses of vitamin C can set it off, the acidity. This wont last forever!! Juli



Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 28, 2006 at 21:54:11:

In Reply to: Re: Interstitial cystitis update posted by Juli [2364.1351] on March 28, 2006 at 18:09:48:

Juli - thanks for the info - are your symptoms all gone?

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Re: Interstitial cystitis update

Posted by
Jill [4685.2287] on March 29, 2006 at 00:05:25:

In Reply to: Re: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 15:07:36:

Hi Tara,
Yes, I do have IC. I'm in the process of getting it under control. I'm working on my diet and I think the relaxtion is very important too. I'm learning a lot from the IC Puzzle Board. (I also think there is great advice here too.) There are many success stories on the site and there are a bunch of wonderful people who will give advice along your healing journey who've either been through it or who are on the same path as you and I. I wish I could say that I was totally past the IC, but I feel confident that things can and will get better. A great book to get is called, "The IC Puzzle", by Amrit Willis.

Jill

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Re: Interstitial cystitis update

Posted by Walt Stoll [93.1889] on March 29, 2006 at 07:14:03:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

Tara,

Symptoms are wonderful messages from our bodyminds that we need to get serious about helping it reverse whatever is going on.

The human thing to do is what you did: stop doing what helped because the symptoms were "better". You know what helps. Keep up what helps carefully for at least 3-6 months and then let us know how you did and how you are doing.

Walt



Re: Interstitial cystitis update

Posted by Amanda [857.1592] on March 29, 2006 at 07:30:42:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

Tara~
My best advice is to stay off of those IC sites! They made me feel hopeless! All these people whining and crying about it. I wanted to DO something about it! I came here and I was uplifted and had hope for the first time! I did not want to be one of those people who just live with it, and come to a message board to gripe about it- I wanted to heal and then help others who suffered with it! LIKE YOU! Excercise IS GREAT for IC. Yoga, Aerobics, walking...it all helps to get you alkalized. When you have IC your body is in an acidic state. You need to alkalize as much as possible. I tested my PH every morning while I was fighting this. Start eating a more alkaline diet, excercise, do SR and YOU WILL HEAL! Your taking the right steps to lead there already! YOUR GOING TO BEAT THIS! Then , when you do, and are learned at it- YOU CAN PASS THE GOOD NEWS ON and help others! I KNOW for a fact this is beatable- I am proof. You follow the advice Dr stoll gives and within 6 months you won't hardly know you had a bladder problem! BEST OF LUCK!! Keep us posted!



Re: Interstitial cystitis update

Posted by
Barbara, Larry, and cats [20.1955] on March 29, 2006 at 09:14:19:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

Hi Tara,
Boy your post and the ans's were interesting! My history and symptoms pretty similar and I find the part about alkaline fascinating because I started back on a diet 30 days ago that I'm thinking perhaps kicked back in my symptoms because eating more things like fruits & veg's that seem acid. Diet working great for the weight loss, tho.

Mine was close to being IC but in 1988 the final verdict was "Sqaumus Metaplasa" (?)or something hormonal and that I was basically normal. Still, symptoms just like yours. I think I had an ecoli infection Sept. 05 that didn't go away - I'm again on Macrobid now. I don't really feel good on Macrobid but only 1 more day of it and to a new Urologist tomorrow which I expect will be a series of same tests and same advice as 10 other times, but you never know.I am 62 now and this began before menopause. Very fascinating posts! Thanks.
Barbara Larry and cats

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Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 29, 2006 at 14:10:25:

In Reply to: Re: Interstitial cystitis update posted by Walt Stoll [93.1889] on March 29, 2006 at 07:14:03:

Thanks Walt. I have been in pain the past 4 days and it is encouraging to hear what you have to say. I will let you know. Do you also think it could be due to PMS? Should I meditate more during this time??



Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 29, 2006 at 14:19:50:

In Reply to: Re: Interstitial cystitis update posted by Amanda [857.1592] on March 29, 2006 at 07:30:42:

Amanda - I have tears in my eyes reading this! I feel like this site was sent to me for a reason.You are the only one that understands! It is the only thing that has kept me going - I am a doer and will not stop until I am symptom free! A lot of people complain about their symptoms not getting better and say that it is not good to workout! I think it is good to workout! Also, there are sooo many different herbal supplements people are telling me to take that it is making my head spin. I am off of work this week for spring break and I feel all I have done is researched this IC to death and feel worse. Honestly, this is the only site I am going to go on. I do have a question for you - where could I get info. on the Alkalized diet and also would you still do aerobics when you had bladder discomfort??



Re: Interstitial cystitis update

Posted by Amanda [857.1592] on March 29, 2006 at 18:04:12:

In Reply to: Re: Interstitial cystitis update posted by Tara [3497.1189] on March 29, 2006 at 14:19:50:

Tara~

YES! I did my aerobics daily! If I had discomfort, I pushed thru it..Everyone said to drink more water and so I switched to ONLY drinking water. No milk except in cereal. Still don't have it- or miss it. On the alkaline foods - I just typed in acid/alkaline diet and tons of sites came up and you can print off lists from there. I was VERY strict at first, but after about 6 months I loosened up a bit, and added some reg foods. It has been almost 3 yrs now...in fact, 3 yrs on april 3rd since the bladder first started, and by Dec of that year, I had almost no symptoms. I found walt's site in Sept- and started practicing SR right away! I felt utterly hopeless until I found this site- I felt like all the other sites I found people were just giving up...I was not willing to do that. I feel I was led to this site for a reason...and I AM 100% bladder prob free! I would help anyone I could rid themselves of this horrible painful condition! No one understands how truely painful and uncomfortable this condition is unless you have suffered from it...I hope I am able to help you even a little. Keep us posted, and any time you have a ?? ASK! I will be happy to let you know what worked for me! Tara~ YOU WILL BEAT THIS!! You have the right attitude!! I usually stop by here 2-3 times a week and I will be looking forward to seeing your progress! BEST OF LUCK!



Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 29, 2006 at 20:13:16:

In Reply to: Re: Interstitial cystitis update posted by Amanda [857.1592] on March 29, 2006 at 18:04:12:

Well your message motivated me so much that I went to the gym and was on the Eliptical for 30 minutes and feel pretty good. Thanks for the info. about the acid/alkaline diet. I will follow strictly. In the mean time someone told me to try Aloe Vera and Calcium Coral Magnesium?? I also ordered the book Solving The IC puzzle. Thank you so much for your positive feedback. Your story keeps my chin up. This has changed my life! In some ways for the better because I am learning to slow down and to not take feeling healthy for granted. I cannot tolerate any milk right now. For the past two days all I've eaten is veggies! I have lost so much weight! I started deep breathing and 20 min. meditations twice a day (I started on Sunday). It is difficult to clear my mind and to not think - however, I do feel relaxed afterwards which is the whole point. I have a 1 year old and work full time so it is hard to have inner peace time, but I am learning. Did you sometimes worry that you weren't meditating right?? I do. All I know is when I am sleeping and in the morning when I am relaxed my IC seems to be gone. I don't wake in the middle of the night to go. Also, when I go to accupuncture - it seems to be better (again relaxed state)! It is hard to stay this way all day when you have a million things to do. I am going to start waking up earlier to try and meditate and just have some me time. I also bought a yoga DVD that I have started yesterday. I am horrible at it - even with the beginners but I will get better. I want to thank you again for listening and let you know that because of your words I will have the positive energy to beat this horrible "thing" and WIN! God Bless - especially our bladders :)! Also, one more thing - on those bad days (hopefully there will be fewer, I hope you don't mind if I reach out to you) You give me hope! Thanks!



Re: Interstitial cystitis update TESTIMONIAL.

Posted by Walt Stoll [93.1889] on March 30, 2006 at 07:02:09:

In Reply to: Re: Interstitial cystitis update posted by Amanda [857.1592] on March 29, 2006 at 07:30:42:

Thanks, Amanda.

Keep up the good work.

Walt

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Re: Interstitial cystitis update

Posted by Walt Stoll [93.1889] on March 30, 2006 at 08:00:12:

In Reply to: Re: Interstitial cystitis update posted by Tara [3497.1189] on March 29, 2006 at 14:10:25:

Thanks, Tara.

When one is dysfunctional in one thing everything else will bother one more. Practicing certified effective SR 3 times a day will help more but until you have been doing it for about 6 months you may still get exacerbations with PMS.

Walt

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Re: Interstitial cystitis update

Posted by Amanda [857.1592] on March 30, 2006 at 09:17:23:

In Reply to: Re: Interstitial cystitis update posted by Tara [3497.1189] on March 29, 2006 at 20:13:16:

Tara~
I would be more than willing to help-so just post when you need a ?? Answered and I ll do my best to help you out! That was my main concern...I NEEDED HOPE...and I could not find it anywhere but here! So...YES! I WILL HELP YOU BEAT THIS!!
I did in fact try the aloe vera tabs at 25.00 a bottle and they did nothing for me-also tried marshmallow root-nothing. The only thing that gave SOME relief was the calcium citrate- I took it at every meal time. And yes, at first I did worry if I was doing the relaxation right, but then I just went with the flow and could feel I was so relaxed. i bought herbert benson's relaxation response book and read it. It is a great informative book! KEEP UP THE GOOD WORK! Take it 1 day at a time...Your gonna be over this hump soon, and helping others on this board who will post with this problem- Just like I am helping you :0) KEEP US POSTED! You will have to start a new post topic...IC PROGRESS! Keep up the good work! Amanda



Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 30, 2006 at 09:52:18:

In Reply to: Re: Interstitial cystitis update posted by Amanda [857.1592] on March 30, 2006 at 09:17:23:

Thanks again! I started the alkalized diet today and am looking forward to having less pain today. I am off to yoga and meditation - I will definitely be in touch - I am going to my uro/gynie today and let him know that this is my aproach. Also, one last question - Kind of personal. My husband and I can't have sex due to the pain! It has been months. How long after I am feeling better should I attempt this? Sorry, but I am human and miss my husband miserably. I read all the pelvic congestion stuff so we have done other things together - but I miss the real intimacy! My husband has been so supportive with this - I just wanted to know what you think. Thanks a MILLION!

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Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 30, 2006 at 19:14:19:

In Reply to: Re: Interstitial cystitis update posted by Amanda [857.1592] on March 30, 2006 at 09:17:23:

Amanda - I feel terrible right now and did a total alkalized diet today. Not sure why? Maybe due to still annoying PMS. Here is my question to you. I don't want to sound negative, but feeling really anxious right now. I know you said you self diagnosed your self with vulvodynia and IC. I have heard vulvodynia is a lot easier to treat and most people have either one or the other but not both. Anyway, i am freaking out because I was thinking maybe you just had vulvodynia and not IC and that is why you are cured. I feel like people with IC battle it like crazy. Ok - I have to gain perspective and do what Walt said with the Skilled Relaxation I just think I am so bummed that I am still pain after being on this alkalized diet. My pain feels worse. My other question is what made you decide to just go with the holistic route. Again, i just need confirmation - to ease my pain - thanks for being such an angel in helping me on an emotional level!




Re: Interstitial cystitis update

Posted by Jill [4685.2287] on March 30, 2006 at 22:13:17:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

Hi Tara,
In my opinion, you have to give this time. There is probably no overnight cure here. If I remember correctly, there are many akaline foods (ex. pineapples, bananas and grapes)that would put most IC people into a lot of pain. You might want to be careful with the choice of akaline foods you are choosing at this point in time. I see you mentioned you ordered, "The IC Puzzle". The author outlines a safe akaline diet to begin with for most ICers. After you get your symptoms better under control she outlines another list to start testing foods from. Some are able to get symptoms under control with her methods fairly quickly and some take weeks or months to really start to turn around. I think for me just having faith and confidence to know things will get better is huge. I know this is all so much to digest. Dr. Stoll's advice here is important, but this book should also give you invaluable tools to work with to. Just my two cents....

Jill



Re: Interstitial cystitis update

Posted by Tara [3497.1189] on March 31, 2006 at 09:42:31:

In Reply to: Re: Interstitial cystitis update posted by Jill [4685.2287] on March 30, 2006 at 22:13:17:

Thanks! Are you recently diagnosed with IC and do you have daily chronic pain?? I need to hear more success stories! Thanks for lifting my chin up!

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Re: Interstitial cystitis update

Posted by
Jill [4685.2287] on March 31, 2006 at 19:41:05:

In Reply to: Interstitial cystitis update posted by Tara [3497.1189] on March 28, 2006 at 08:52:51:

Hi Tara,
No, I'm not recently diagnosed. I've had these symptoms for about 5 years. I've lurked around on this board and the IC Puzzle board for atleast 2 years. It took me this long to really commit and motivate myself. I wish there was an easy way for us to be rid of this for good. I think the truth is though that it will take some work and commitment from us. Yes, I've had almost constant pain. During my pregnancy and through nursing I've had barley any pain. I know this will no longer be the case when I stop nursing unless I finally deal with the causes. Check out the IC Puzzle posts right now. There are a few reposts of success stories and you can also find more that are archived there.

Jill



Re: Interstitial cystitis update

Posted by Tara [1566.1189] on April 01, 2006 at 20:46:48:

In Reply to: Re: Interstitial cystitis update posted by Jill [4685.2287] on March 31, 2006 at 19:41:05:

Thanks for the info.In my opinion,I think so many people are going about this in the wrong way. Too much info. Walt's way seems so much more because he is dealing with the root of the problem. I recently spoke with a professional who has helped many women with IC. I am going to be getting treatment from this individual. I will let you know how it goes, however I will wait to see if this route I am taking works. It is noninvasive and no drugs. I will let you know how it goes. I had my first treatment today. I am all about being done with this and I finally feel like I am on the right track.




Re: Interstitial cystitis update

Posted by Jill [4685.2287] on April 02, 2006 at 00:32:07:

In Reply to: Re: Interstitial cystitis update posted by Tara [1566.1189] on April 01, 2006 at 20:46:48:

Hi Tara,
Do you mind if I ask what type of treatment this professional offers?

Thanks,
Jill



Re: Interstitial cystitis update

Posted by amanda [857.1592] on April 03, 2006 at 22:44:26:

In Reply to: Re: Interstitial cystitis update posted by Tara [3497.1189] on March 30, 2006 at 19:14:19:

Tara~
Sorry I did not get to you sooner- I was out of town. Anyway, I did not have the vulvodynia...Just On my way to being diagnosed with IC-but in the meantime became PG and could not have the cystoscope done. I knew there was really nothing modern medicine could do..Mr doctor said there was no "cure" for this... Only treatments that did not work very well and had NASTY side effects! I could not believe it, so I researched it as much as I could. I figured there had to be SOMETHING I could do myself! That is when I came across this site. Even after I changed my diet and started SR, it did not cure me overnight-and some days were a lot worse than others. You are going to have good and bad days...but eventually the good will become more and more frequent until there are hardly any bad...Give yourself time...and relax...it's going to get better.. Keep me posted and ask any ?? you need~ Take care~



Re: Interstitial cystitis update

Posted by Tara [1566.1189] on April 04, 2006 at 21:07:30:

In Reply to: Re: Interstitial cystitis update posted by amanda [857.1592] on April 03, 2006 at 22:44:26:

Amanda - Again, I truely appreciate all of your support. I have been doing OK and I think I am on the right track. I also spoke with a PT regarding this and she was absolutely wonderful. She explained the whole part of the muscle straining and levor ani muscles, etc. I printed and gave her Dr. Stoll's information. It is all starting to make sense. I am going to also be seeing her 3 times a week and soon my job will be done (in June). These are all things I am looking forward too. Thank you for being so understanding. I have changed my diet to more alkaline foods. Did you eat wheat still? I weaned it out but still have some per day (not as much as normal). I am eating a lot of hummus, alvocados, all veggies, salads and a little chicken. Also, sushi and fish. I will keep you posted. Please send me tips - thanks!

Tara

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Re: Interstitial cystitis update

Posted by Tara [1566.1189] on April 04, 2006 at 21:14:03:

In Reply to: Re: Interstitial cystitis update posted by Jill [4685.2287] on April 02, 2006 at 00:32:07:

She is a physical therapist and specializes in women gynocology. I only met with her once and for 3 hours. We went through everything and she told me I was very inflammed (in that region) and that tighten all of the muscles has caused this irritation/inflammation. I begin seeing her next week since this week I got my period. She also does biofeedback. She is getting to the root of my problem, stress and how my body handles it. Everything is beginning to make sense. Also, I started taking Prelief and eat a more alkalized diet which has helped (for awhile I have been feeling OK and I need to knock on wood really hard! But I still get pressure)I will let you know how it goes after I start more sessions. She is doing exercises with my muscles and tissues.

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