I hope you can help my daughter. She was diagnosed with Interstitial Cystitis at 22. This was 9 months ago. She has tried all the traditional treatments such as installations, medications, elmiron...nothing has helped her. I have watched this once vibrant girl deteriorate into a very depressed and isolated person. The last straw was her fiancee ending their relationship because of this disease. I and my daughter have read your archives on IC and have posted the premise you have on a couple of the other sites relating to IC to see what they thought, and there comments are that the idea of bracing could not cause the disease. They concede that pelvic floor dysfunction therapy will help with IC, however it does'nt cause it and PFD therapy won't cure it. You seem so convinced, apparently from first hand experience with patients you have had that have used relaxation, and as stated, all have cured themselves. Why is there such a closed mind from others with this disease regarding your ideas? Secondly, is the disease caused by pelvic dysfuction? Lastly, I know everyone is different, but when one is doing the relaxation techniques, what can be expected in the healing process? Are there any benchmarks that occur in the healing process that one can look for?
Follow Ups:
Re: Interstitial Cystitis (TOLSTOY QUOTE)
Posted by Walt Stoll on December 18, 1998 at 12:02:19:
In Reply to: Interstitial Cystitis posted by Anna on December 17, 1998 at 14:33:01:
Dear Anna,
This is the place for me to, ONCE AGAIN, quote Tolstoy:
"I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others, and which they have woven, thread by thread, into the fabric of their lives."
Tolstoy
It continues to amaze me that these "professionals" can say that PFD is not caused by Levator ani "bracing". They will admit that they have NO IDEA what causes it but it can't be voluntary muscle tension. Interesting that everyone who learns skilled relaxation soon can sense the tension in the muscle and learn to relax it. Of course, these "learned people" won't listen to that (Tolstoy again).
What have I to gain by putting out false information? I am retired and make no money from people getting well. These are "treasures more precious than gold" that I will never get unless people GET well.
Put a note on the BB titled something like "IC Relaxation Testimonials". There have already been many of them. Perhaps some would be willing to put their experiences down again.
Of course, "PFD therapy" will not cure IC if the people doing it have no idea what causes PFD. Talk about the blind leading the blind!!!!!!!!!!!!
This is the open door. No one can make your daughter walk through it. What does she have to lose?
Walt
IC Testimonial
Posted by Vicki on December 18, 1998 at 12:37:14:
In Reply to: Interstitial Cystitis posted by Anna on December 17, 1998 at 14:33:01:
I read Walt's reply regarding IC testimonials and thought I'd put my two cents in again. I am well aware of how miserable your daughter is right now.
I developed IC around 4 years old. This is not common, but I can remember it, my mother's reaction to it (negative) and the anxiety I developed regarding the reactions of her and others.
By the time I was 30 years old I was in the bathroom about 60 times a day and no one could tell me what was wrong. My life revolved around the need to use the bathroom. I was depressed, sleep deprived, and severely limited on career choices, etc. It was a severe handicap that embarrassed me greatly.
At 30 I was told I had IC. DMSO was tried with no success, dialation, same thing, and then I went on anti-spasmodics which made me sick for two months to "retrain my brain". That did help. I quit responding to the need all the time and was able to suppress some of the symptoms.
This last made it somewhat livable, and never having known anything else seemed pretty okay with me. Gradually over time, however, I would slip back into the old mode of responding too often which really compounds the problem. At 40 I went on a personal retraining program to just ignore it and get on with my life and pretty much got myself back on track to a more livable condition.
At 47 I ran into Dr. Stoll's bulletin board. I have irritable bowel problems, some food allergies, depression, a lot of anxiety and very poor sleep. I read all of the BB issues around IC.
All the specialists had told me that they didn't know what caused it, they didn't know why the medications worked whent they did (I could never take nay of them) and if you stopped taking them it came right back.
You don't have to live with this long to realize that when you're anxious it's worse, when you're relaxed it's better. The more anxious about it you get the worse it gets. The muscle bracing idea made sense, but man I hated the idea of having to do so much for myself for such a long time. The whole idea of a miracle pill still sounded good. But since none of the pills worked for me because I couldn't tolerate them I didn't have much choice.
I began the skilled relaxation 14 weeks ago. I noticed improvements very quickly. I think my body had been so stressed out for so long it just collapsed when it finally got the chance to relax. I would practically go into a full blown trance. That has smoothed out, my body has gotten used to it's periods of relaxation and it is now making me work harder at it to keep the same focus.
I sleep better, far better, even when I have to get up almost as often as before.
I sometimes only have to get up once in the night. This was NEVER the case before SR. I sometimes go to sleep without having to get up first. This was NEVER the case before SR.
The frown lines between my eyes have smoothed out. They were just getting worse before SR.
My mood is better, I'm far more calm, far better able to handle the ups and downs of everyday life.
I have periods of several hours where I am comfortable with little or no IC symptoms. On my self-training regimen half an hour was it before symptoms would set in.
I have quit agonizing for the most part that this is never going to get better, because it has, and the "bad" days no longer induce terror in my heart.
If I get too uncomfortable with my progress I look to the BB for encouragement. Walt has picked me up many times.
I am healthier for this and would do it whether it improved the IC or not. I easily see how it could help others, I can see how hard it is for them to give it a try and harder still to stick to it. Humans are amazingly adaptable and can live with and in horrible conditions. It is comfortable to do what we're used to doing.
Your daughter has nothing to lose trying this. It can't hurt, it can only help. It eventually occurred to me that I had a lot of questions that were only going to get answered if I forged ahead. It costs you nothing. You will gain much.
Follow Ups:
Re: IC Testimonial
Posted by Anna on December 18, 1998 at 16:20:10:
In Reply to: IC Testimonial posted by Vicki on December 18, 1998 at 12:37:14:
Thank you Vicki for your note. The fact that you have seen progress with your IC is so encouraging. It is what my daughter and I need to see. I hope that everyone with IC posts their improvements as it gives you the hope that is needed to forge ahead. As far as I know, the people on this site are the only ones practicing SR for their IC, and it is so important that we see how others are progressing.
thank you, anna
Re: IC Testimonial
Posted by Walt Stoll on December 19, 1998 at 11:12:32:
In Reply to: IC Testimonial posted by Vicki on December 18, 1998 at 12:37:14:
Thanks, Vicki, for your wonderful sharing.
The problem is NOT that this does not work it is only in getting people to try it.
Just think how much good a testimonial like this would have done YOU had you seen it from someone else years ago.
Bless you for helping others. As I am fond of saying: "Helping others move toward wellness is an aspect of our own."
Namaste` Walt