Interstitial Cystitis historical posts June 1998

interstitial cystitis

Posted by Sharon on June 03, 1998 at 01:06:09:

Had interstitial cystitis years ago and it lasted 10 years.
Went on mandelomine for app. 2 months and it went away. I was
symptom free for 13 years until now. Will try again but any
other suggestions? I am convinced that in my case the
etiology was always bacterial although undiagnosable.


Re: interstitial cystitis

Posted by Walt Stoll on June 05, 1998 at 09:42:23:

In Reply to: interstitial cystitis posted by Sharon on June 03, 1998 at 01:06:09:

Dear Sharon,

This is another misery that is totally unnecessary. Use the link: Interstitial Cystitis.

Then, if you have questions about how you can get rid of your causes, write again.

Walt



Re: Interstitial Cystitis

Posted by Sharon on June 03, 1998 at 01:21:55:

I suffered with apparent IC for 10 years on and off when I was
20-30 yrs old. I am convinced that the etiology was an un-
diagnosable bacterial agent that will be eventually uncovered
in much the same way the cure for ulcers was. Antibiotics
worked at first, then did not and I was in great pain for
years. I was told I was "too young" to have IC and instead
placed on a regimen of Mandelomine 4x a day with Vit. C. to
keep the ph where it should be to be effective. I gradually
improved on this regimen until I was completely well. I then
became pregnant and have not had a relapse for 13 years, taking
Mandelomine whenever I felt a twinge of anything. I do not
know for sure whether it was the Mandelomine or the pregnancy
that gave me a 13 year remission of all symptoms. I have
recently had a resurgence of symptoms and will try antibiotics
as a first measure, followed by a lengthy course of the
Mandelomine with the hope that again I experience relief.
IC is devastating to live with--you feel like an invalid,
unable to go anywhere, visit, travel, etc. I offer this
bit of experience for your possible inclusion as resources
Contact me for more information and compassion.



Re: Interstitial Cystitis

Posted by lynelle rubino on June 03, 1998 at 01:52:28:

In Reply to: Re: Interstitial Cystitis posted by Sharon on June 03, 1998 at 01:21:55:


please tell me where i can find this mandelomine, and where can i purchase the drug.


Re: Interstitial Cystitis

Posted by Walt Stoll on June 05, 1998 at 09:46:52:

In Reply to: Re: Interstitial Cystitis posted by lynelle rubino on June 03, 1998 at 01:52:28:

Dear Lynelle,

Mandelamine can never do more than give temporary benefits since it does nothing about the cause--
only about the consequences. Eventually, the problem will come back----------just like Sharon's did. I will BET that the Mandelamine will not work so well this time for her.

Mandelamine is just another antibiotic that is excreted in the urine.

See my note to her and consider becoming an expert yourself.

Walt



Re: Interstitial Cystitis

Posted by Reba on June 04, 1998 at 21:58:25:

In Reply to: Re: Interstitial Cystitis posted by lynelle rubino on June 03, 1998 at 01:52:28:

I saw your messages regarding mandelomine. I, too have IC and am being treated with Imipramine. I recently got a bladder infection which was a major setback to my feeling better. I am curious, also about your pregnancy. I am 29 and was trying to get pregnany before my diagnosis. Now my Urologist is very discouraging with me whenever I bring up my desire to have a baby. What was your experience during pregnancy? Were you symptom free before you got pregnant? Any problems during pregnancy? I do have a history of bladder infections as well. Thank you!!! Reba


Re: Interstitial Cystitis

Posted by Sharon on June 04, 1998 at 21:41:19:

In Reply to: Re: Interstitial Cystitis posted by lynelle rubino on June 03, 1998 at 01:52:28:

To Lynelle Rubino:
Mandelamine is a prescription drug. It is an antiseptic
for the urine that requires that you take vitamin C
along with it to keep the urine acidic. This combination
kills bacteria by turning your urine into an "ammonia-like"
substance. I took 1gram 4x/day along with 500mg. vit. C
at each dose. It took several weeks for me to feel better.
I have used this whenever I felt anything coming on for
a day or two and have been symptom free for almost 15 years.
I now have a recurrance of what may be IC again if it is not
simple bladder infection. I will know soon. But for you,
if antibiotics, antispasmodics, etc., have not worked,
I would try the mandelamine. A dr. may think you are crazy
because this is an old drug, but there may be something to
it. There seemed to be for me. After all, they don't even
know what IC is. Let me know how you do please.

it


i




Re: Interstitial Cystitis

Posted by dmaldredge on June 20, 1998 at 22:33:47:

In Reply to: Re: Interstitial Cystitis posted by Sharon on June 04, 1998 at 21:41:19:

My friend who is 60 has all the symptoms, but is afraid she has bladder cander. First sign was blood in urine on routine physical exam in Feb. There were no symptoms by patient. Then she started having burning, frequency, and external inflammation in April. Tests still show no bacteria. She has been on antibiotics, anti-inflammatories, etc., but really has not had any significant relief from discomfort. She is to return June 30 for further tests, including another cysto. She fears the worst. I think maybe not. Thanks for your replies.



Re: Interstitial Cystitis

Posted by Walt Stoll on June 22, 1998 at 12:05:05:

In Reply to: Re: Interstitial Cystitis posted by dmaldredge on June 20, 1998 at 22:33:47:

Dear demaldredge,

It is pretty easy to diagnose which she has via cystoscopy. If she has already had one, why is the diagnosis uncertain? If there is any doubt, multiple biopsies can be made at the time of the cysto.

Worry will only make ANY diagnosis more damaging & symptomatic. She needs to KNOW.

Walt



Re: Interstitial Cystitis

Posted by LYNELLE RUBINO on June 03, 1998 at 01:58:16:

ALLEN, I SUFFER FROM INTERTSTITUAL CYSTITIS, ALSO, I WAS BEING TREATED BY A UROLOGIST WHO ALSO WAS VERY CALLOUS, BUT WENT ON TO A NATURAPATHY DOCTOR WHO HELPED CONTROL MY SYMPTOMS WITHIN 2 WEEKS AT LEAST 90%, ALSO DIET IS A VERY BIG PART, HAVE HER TESTED FOR FOOD ALLERGIES, AND HAD DMSO TREATMENTS, ALSO TAKE 25MG. OF ELOVIL AT NIGHT THAT HELPED SIGNIFICANTLY, ALSO HIGH DOSES OF GARLIC TABLETS TO KILL ANY INFECTION, AT FIRST MY HUSBAND WAS VERY SKEPTICAL ABOUT ALL THESE HERBS, WAS CONVINCED WHEN HE SAW HOW QUICKLY THE RESULTS WERE. ALSO ORDERD ALOE VERA FROM IC FOUNDATION WHICH ALOT OF IC SUFFERS SWEAR WORK.. HOEP THIS INFORMATION HELPED YOU


Re: Interstitial Cystitis

Posted by Marty on June 10, 1998 at 22:59:19:

In Reply to: Re: Interstitial Cystitis posted by LYNELLE RUBINO on June 03, 1998 at 01:58:16:

Lynelle,Can you tell me what you know about the use of aloe vera; you mention this in your posting.


Re: Interstitial Cystitis

Posted by Sharon on June 04, 1998 at 21:54:36:

In Reply to: Re: Interstitial Cystitis posted by LYNELLE RUBINO on June 03, 1998 at 01:58:16:

Lynelle: How do you know which of the things you did
worked for you? You say you had DMSO, take elovil, use
garlic and use aloe vera. I am in pain now and would
like your recommendation on which of these things were
of the greatest help. Also, where can I get the aloe
vera--where is IC foundation/address. Thanks much


Re: Interstitial Cystitis/ ICA INFO

Posted by Dian on June 15, 1998 at 22:52:52:

In Reply to: Re: Interstitial Cystitis posted by Sharon on June 04, 1998 at 21:54:36:

The ICA is a wonderful and professional avenue of support.'
ICA
P.O. BOX 1553 MADISON SQUARE STATION
NEW YORK, NY 10159

GOOD LUCK AND YOU MAY ALSO REACH ME BY EMAIL



Re: Interstitial Cystitis-Notriptyline (antidepressant)

Posted by Sapphire24 on June 12, 1998 at 22:19:25:

In Reply to: Re: Interstitial Cystitis posted by Sharon on June 04, 1998 at 21:54:36:

Elavil is an antidepressant. I have been taking one called
Nortriptyline, and it worked great for 1.5 years. I have
just had my 3rd cystoscopy and my 1st bladder distention.
The bladder distention did not work for me. Will be talking
to my dr. about Elavil with Elmiron(IC drug) and an antihistamine (unknown which one yet) as my urologist says
that is the new protocol mentioned that he has heard about.
Keep in mind that antidepressants have a lot of side
effects for different people. But for me I was willing to
put up with my side effects (fatigue & stomach acid) than
with the pain of IC. Good luck!


Re: Interstitial Cystitis

Posted by KD on June 03, 1998 at 16:53:05:

I can feel for your wife. I am 25 years old and was just diagnosed with IC after months of pain and emotional frustration. After a cytoscopy and bladder distension last month, I have followed a strict diet with no caffeine, chocolate, alcohol and spicy foods. I can't tell you what a difference it makes! I am assuming your wife has had similar procedures. If not, get going with them. I hope her condition inproves but in the meantime, take comfort in the fact you know what it is causing her this pain! It is much scarier to not know for months. I felt a great sense of relief after my diagnosis.


Re: Interstitial Cystitis

Posted by Sapphire24 on June 12, 1998 at 22:08:35:

In Reply to: Re: Interstitial Cystitis posted by KD on June 03, 1998 at 16:53:05:

Not all patients respond by diet changes...IC seems to be a
very unique disorder to different people.


Re: Pediatric urinary tract infection

Posted by linda vanportfliet on June 04, 1998 at 11:21:37:

Dear Dr. Stroll:

I also have an 8 year old daughter with reaccuring
urinary tract infection. Her Doctor also has her on a "maintenance program" anti-biotic. This has been going
on for two years. When she goes off the med. she gets another infection.. Can you reccomend a Dr. in the
Grand Rapids, MI area? Thank you
Linda



Re: Pediatric urinary tract infection

Posted by Peggy on June 09, 1998 at 12:21:12:

In Reply to: Re: Pediatric urinary tract infection posted by linda vanportfliet on June 04, 1998 at 11:21:37:

Linda,

Please see the message from me under Charles Kemper.

Peggy




Re: Pediatric urinary tract infection

Posted by Walt Stoll on June 12, 1998 at 08:33:12:

In Reply to: Re: Pediatric urinary tract infection posted by Peggy on June 09, 1998 at 12:21:12:

Dear Peggy,

Of course, I forgot to mention in my other note: less than 10% of recurrent urinary infections in little girls are due to a structural cause. In little boys, the % is more like 50%.

Walt



Re: Pediatric urinary tract infection

Posted by Walt Stoll on June 06, 1998 at 12:00:51:

In Reply to: Re: Pediatric urinary tract infection posted by linda vanportfliet on June 04, 1998 at 11:21:37:

Dear Linda,

Have congenital structural causes been ruled out via xrays & cystoscopy? If so, she has candida-related syndrome until proven otherwise. If not, you need to see a pediatric urologist in consultation.

The long term antibiotics, although helping keep the infection under control, are continually making the C-RS worse.

There are many books out now about children & C-RS. They will all mention your child's health history.

Once you have some more knowledge under your belt, call the Great Lakes College for Clinical Medicine (800) 286-6013 and ask them for the names of docs close to you who would know about C-RS. Also call (800) 522-4762 and ask them for the names of docs close to you who would know enough to order a comprehensive stool analysis and a purged stool analysis AND what to do with the results.

THEN compare the 2 lists. Those who appear on both lists are the ones I would call first. In the meantime, be collecting copies of all her medical records (they should be in your home anyhow) and be sure to take them when you go for your consultation.

As she gets well, I hope you will take the time to share her experiences with the rest of the bb participants. There are a lot of people out there struggling just as you have been. They deserve to know that there IS a resolution to this.

Walt



Re: Interstitial Cystitis

Posted by T.R.S. on June 04, 1998 at 19:43:02:


I have ic.But unlike most of you, I have no pain at all.I just have the feeling that I have to use the restroom all the tim, when I actually don't have to.I have had it for a year now.I have to take Toffranil all the time.Sometimes, for a long while, I feel better.But it slowly starts getting worse, and I'm back in the Urologists office.They think (hope) that I will grow out of it, most kids do.


Re: Interstitial Cystitis

Posted by Walt Stoll on June 06, 1998 at 12:59:57:

In Reply to: Re: Interstitial Cystitis posted by T.R.S. on June 04, 1998 at 19:43:02:

Dear T.R.S.,

Growing out of IC used to be the case (sometimes) but that is not so often true nowadays.

The solution to IC is on this website. You can start with the link: Interstitial Cystitis

Once you read the resources listed, if you still have questions, write again.

Walt



Re: Interstitial Cystitis

Posted by Reba on June 04, 1998 at 22:06:43:

I have questions for all of you informed IC sufferers out there. I have been suffering with IC for 5 months and am taking 75mg of Tofranil (Imipramine) daily. It was working well until I suffered a bladder infection which set me back tremendously. I am curious if any of you also suffer from actual bladder infections, as well as IC? Has anyone gone thru a successful pregnancy with IC? I was in the process of trying to get pregnant when all of this began- and now the Dr. is discouraging me! Help!


Re: Interstitial Cystitis

Posted by Tessa Nasalroad on June 29, 1998 at 13:47:40:

In Reply to: Re: Interstitial Cystitis posted by Reba on June 04, 1998 at 22:06:43:

I get bladder infections all the time and sometime kidney infections with IC. I had a successful pregnancy and my son is healthy.



Re: Interstitial Cystitis

Posted by Sapphire24 on June 12, 1998 at 22:02:57:

In Reply to: Re: Interstitial Cystitis posted by Reba on June 04, 1998 at 22:06:43:

IC sufferer since 94. Yes you can suffer bladder infections
just like any other normal person, all it takes is bacteria
in the area, especially for women since vaginal bacteria can get in the urethra/bladder since they are so close to each
other. My urologist said that some women feel better when
pregnant, but not all.....I think it is a very individual
thing. Want to talk, email me instead.....Good luck.


Re: Interstitial Cystitis

Posted by Tessa Nasalroad on June 29, 1998 at 13:50:13:

In Reply to: Re: Interstitial Cystitis posted by Sapphire24 on June 12, 1998 at 22:02:57:

My pain was much better when I was pregnant. Never really had any pain. I found out that I had IC a few months ago. I am 21. Ever since I was little I was told it was a bladder or kidney infection and would be put on antibiotic. I have problems having bowel movements and wonder if that has anyhting to do with it?



Re: Interstitial Cystitis

Posted by Judy on June 05, 1998 at 21:16:03:

HI! I am a 23 year old IC sufferer. I have had IC for several years and have undergone everything Stanford Hospital has to offer. I have received treatments of DMSO, Elmiron, Elavil, distentions, biofeedback, and physical therapy. Currently I am on a pain cocktail that reduces the pain, but I know it is just masking the symptoms. Yesterday I bought several supplements including Cats Claw, CoQ10, Ester C, and nutragreens. Has anyone had any luck with any of the above nutrients? I am also curious to see if anyone feels like they always have the flu. I am wondering if many of my symptoms are from IC or if they are from the opiate pain cocktail. All I know is that I feel like I am 83 instead of 23!!


Re: Interstitial Cystitis

Posted by Dian on June 15, 1998 at 22:37:31:

In Reply to: Re: Interstitial Cystitis posted by Judy on June 05, 1998 at 21:16:03:

I too have flu like symptoms including fevers that go as high as 103. I take Stadol NS for really intense pain and it too is an opiate. I have found that the flu like symptons and fever come on when I have used the Stadol. Please let me know if you experience fevers.



Re: Interstitial Cystitis

Posted by Walt Stoll on June 07, 1998 at 12:25:36:

In Reply to: Re: Interstitial Cystitis posted by Judy on June 05, 1998 at 21:16:03:

Dear Judy,

The only thing yet known that will resolve this problem is stopping your habitual tightness of your levator ani muscle. This has been discussed many times right here on this BB.

You are going to have to become a student of this process. Let me know when you are ready to do some serious learning AND the work needed to learn to get rid of stored muscle tension. I will be glad to do my part when you are ready to do yours.

Walt



Re: Interstitial Cystitis

Posted by Judy on June 16, 1998 at 12:54:32:

In Reply to: Re: Interstitial Cystitis posted by Walt Stoll on June 07, 1998 at 12:25:36:

Dear Walt,
I want to learn. I want to live without this terrible disease and I will do anything to get to that point. Please help! I am at the end of my rope! Thank you for any assistance you can offer. My e-mail is JudyNima@AOL.com. Thank you


Re: Interstitial Cystitis

Posted by Walt Stoll on June 18, 1998 at 09:48:54:

In Reply to: Re: Interstitial Cystitis posted by Judy on June 16, 1998 at 12:54:32:

Dear Judy,

I do not give clinical information by email. The main reason that I am willing to donate abotu 6 hours a day to helping people on the internet is that many people can access the information at one time. Done by email, no one else will ever see it.

There are thousands of people out there with problems like yours and only one of me. For those not willing to share publically, I offer my Health Coaching Service (see link on this page). To know what information I would need to know, read the HC Service. If you do it publically, it is free.

ALL IC patients need to do the skilled relaxation at least twice a day for 20 minutes (not counting any done within 2 hours of retiring). Either see a copy of my book or go to the homepage of this 'site & read about skilled relaxation.

Walt



Re: Interstitial Cystitis

Posted by Susan on June 09, 1998 at 14:33:03:

In Reply to: Re: Interstitial Cystitis posted by Walt Stoll on June 07, 1998 at 12:25:36:

Dr. Stoll:

I am interested in your theory about IC being caused
by muscle tension. If this is true, isn't there some
medication that would relax this muscle, and if not, why
not? In IBS which I have also had, Librax worked great
for me when all else failed. How successful is your
program? Thanks much.


Re: Interstitial Cystitis

Posted by Walt Stoll on June 12, 1998 at 09:01:57:

In Reply to: Re: Interstitial Cystitis posted by Susan on June 09, 1998 at 14:33:03:

Dear Susan,

I wish that I could claim that this was MY theory. However, it has been known around the world ever since biofeedback was developed 30 years ago.

I have seen dozens of IC patients since I learned that relaxing the levator ani would resolve the problem. 100% of those willing to learn an effective skilled relaxation technique resolved the problem within 6-12 months of regular practice. 100% of those who would not learn & practice this skill still have their problem. Some people would sooner die than learn something new. I think that is OK so long as they have been given the information so they have an informed choice.

Of course, tranquilizing you out of your mind might help for a while but I think you will find that (as I have said so many times right here on this BB) "For chronic problems like this, nothing you TAKE will resolve the problem. Only something you DO."

The only way you will be able to resolve this is to become a student of the process----which takes learning.

Even using the specialized biofeedback probes insereted into the urethra, vagina or rectum will not resolve the problem permanently since the levator ani bracing is just part of the generalized bracing due to the stress-effect storage of the fight or flight in the hypothalamus. Only getting rid of the cause will resolve this problem permanently.

Your best beginnning to learning would be for you to read "Mind as Healer, Mind as Slayer" by Dr Pelletier. Get the most recent edition & when you have that much learning under your belt, if you still have questions, write again.

Walt



Re: Interstitial Cystitis

Posted by Dian on June 15, 1998 at 22:41:47:

In Reply to: Re: Interstitial Cystitis posted by Walt Stoll on June 12, 1998 at 09:01:57:

Do you have interstitial cystitis ???????



Re: Interstitial Cystitis

Posted by Walt Stoll on June 17, 1998 at 10:40:49:

In Reply to: Re: Interstitial Cystitis posted by Dian on June 15, 1998 at 22:41:47:

Dear Dian,

I do not, although I DO think that any physician treating the SYMMPTOMS of IC would do better of they DID.

I CAN say that all of my patients who were willing to learn how to discharge their total body bracing (and incidentally their levator ani bracing) totally resolved their problem. See my other notes about IC today.

Those who really have had their IC long enough have it within their power to get rid of it. It will never (in my opinion) be resolved by something they TAKE but by something they DO.

Walt



Re: Interstitial Cystitis

Posted by   on June 09, 1998 at 15:11:10:

In Reply to: Re: Interstitial Cystitis posted by Susan on June 09, 1998 at 14:33:03:

Hi Susan,

I am interested in your theory about IC being caused
by muscle tension. If this is true, isn't there some
medication that would relax this muscle, and if not, why
not? In IBS which I have also had, Librax worked great
for me when all else failed. How successful is your
program? Thanks much.

There is likely a prescription drug to suppress most any imaginable symptom. Symptom suppression is useful when it gives the person the strength to do something about the causes of the symptoms, but may not be the healthiest course when the causes are not addressed. Unfortunately we are a culture that often uses doctors to suppress our symptoms because it's too hard to deal with causes.

It's like the analogy of the smoke alarm. When the smoke alarm goes off, of course my first job is to shut the darn thing off before I go nuts from the noise. But then I put effort into finding and dealing with the source of the smoke. If I wait until I actually SMELL the smoke, then the situation is more grave. Still I could open a window or put on a mask and go on about my business until I see fire. Even then I could "solve" the problem by moving to another room that isn't on fire...

Peace,
Bill


IC

Posted by Anne on June 07, 1998 at 05:05:23:

Dear Dr. Stoll,

For the last year, I have been suffering from symptoms of IC. I have been to 3 urologists, and have not yet been diagnosed with this, but am in the stage where the doctors are ruling out other conditions. My urologist would like to do a biopsy next. I have already had a cystoscopy. My doctor just put me on Detrol to see if this helps me at all. The reason I am up at 5:00 in the morning is because I have extreme pressure in my bladder and cannot urinate right now. I have been up reading your letters to other women sufferers, and I am hoping you can tell me where to start, or what to do next. I am 28 years old, and getting married this weekend! I'm scared that my special day will be filled with bladder pain! Please write back and let me know what I should do next?!! I'm desperate. Thank you.


Re: IC

Posted by Walt Stoll on June 09, 1998 at 08:45:05:

In Reply to: IC posted by Anne on June 07, 1998 at 05:05:23:

Dear Anne,

Getting rid of the causes will take you about 6-12 months so your honeymoon is likely to be miserable.

By far the most effective way to deal with what you have (I have very little doubt that your final diagnosis will be IC) is to learn an effective skilled relaxation technique, as described on this website many times and practice it at least twice a day for 20 minutes (not counting any you might do within 2 hours of retiring). Within a few weeks of the correct technique for you, you will begin to notice the extreme chronic & habitual muscle tension in your perineal muscles--that has been ther all along but not noticed. Consciously trying to keep them relaxed will help you get results sooner.

A radical dilation of your urethra (a urologist could do this for you) could give you great relief within a few days (especially if silver nitrate solution combined with a DMSO solution would be instilled at the same time). Unless you had that done today, there is no way that you will be improved for this weekend. By all practical measures, it is too late to save your wedding weekend.

Be prepared for pain. If you are perfectly honest with your loved one (your only hope to prevent this from becoming a much more serious problem between you) you should get through this fine.

If we had connected 3-6 months ago about this, things would have been different.

As you get this under control, please share your experiences with the bb participants. Think how your life would have been different if you had read ( a year ago) of others resolving this problem.

Walt


Re: Pediatric urinary tract infection

Posted by Peggy on June 09, 1998 at 12:17:50:

I had recurrent UTIs when I was a child (I'm now 31). I've been told that I would have been dead by 5 if they had not found the problem. I was born with malformed ureters. I guess they were U-shaped and as it was put to me "sending waste back up into my system". I was on antibiotics until age 7, at which time I was old enough to have surgery done to correct my ureters. Perfectly normal since then.

Good luck.

Peggy





Re: Pediatric urinary tract infection

Posted by Walt Stoll on June 12, 1998 at 08:31:13:

In Reply to: Re: Pediatric urinary tract infection posted by Peggy on June 09, 1998 at 12:17:50:

Dear Peggy,

For those with a structural cause of their recurrent infections, surgical correction is lifesaving. For those with no structural cause, the consequences can be just a fatal. It is just that in that case, there is no structural abnormality to correct. That means that only by dealing with the other causes can the problem be resolved.

Walt



Interstitial Cystitis

Posted by Linda Dunn on June 10, 1998 at 22:25:48:

Dear Dr. Stoll:

I was diagnosed with interstitial cystitis in 6/97. Since then, I have tried numerous medications that have done little to relieve my symptoms. Among them are Elmiron, Elavil, Amitrypeline (for pain), DMSO, Cardura, Flomax (to relax the bladder neck), Hytrin, etc. I have also been to a physical therapist and am now using a TENS unit for pelvic pain. Are there any medications that have worked well for other people that I haven't listed above? Or am I to assume that I may have been mis-diagnosed?


Re: Interstitial Cystitis

Posted by Walt Stoll on June 12, 1998 at 16:07:10:

In Reply to: Interstitial Cystitis posted by Linda Dunn on June 10, 1998 at 22:25:48:

Dear Linda,

Interstitial Cystitis is EASY to diagnose! SO, your diagnosis is probably right. It is your treatment that lacks any sense.

Go to the link: Interstitial Cystitis and read the references suggested. Chronic problems like this will never be resolved by something you TAKE but by something you DO. Also, see the several notes about this over the past week.

THEN, if you still have questions, write again. The first 15 years I was in practice I referred all my IC patients to the urologist for conventional treatment. I NEVER saw one cured. The last 15 years (since I knew enough to understand why it happened) I never had one that was NOT cured IF they were willing to learn & do what is needed to get rid of the causes.

Walt



Interstitial Cystitis (IC)

Posted by Liz on June 12, 1998 at 14:52:03:

I could swear I have IC - I have been to a few different doctors who keep giving me medication for a bladder infection, which obviously doesnt work, but they say I can't have IC because I don't have any WHITE CELLS in my urine (only red). Has anyone heard of the WHITE CELL theory? I can't find anything on white cells & IC? Although the white cell count in my blood is 15,300. Please help me. I am in pain and no one seems to be able to help.


Re: Interstitial Cystitis (IC)

Posted by Walt Stoll on June 14, 1998 at 09:33:38:

In Reply to: Interstitial Cystitis (IC) posted by Liz on June 12, 1998 at 14:52:03:

Dear Liz,

MOST diagnoses of IC are made by history just as yours was. White blood cells indicate an infection. Just red blood cells indicate no infection, just inflammation----which is the hallmark of IC.

This is a TOTALLY uinnecessary condition. Go to my home page and read about IC. That will get you started.

THEN, if you still have questions, write again.

Walt



Re: Interstitial Cystitis

Posted by Liz on June 12, 1998 at 15:05:05:

I could swear I have IC - I have been to a few different doctors who keep giving me medication for a bladder infection, which obviously doesnt work, but they say I can't have IC because I don't have any WHITE CELLS in my urine (only red). Has anyone heard of the WHITE CELL theory? I can't find anything on white cells & IC? Although the white cell count in my blood is 15,300. Please help me. I am in pain and no one seems to be able to help.



Re: Interstitial Cystitis

Posted by Sapphire24 on June 12, 1998 at 21:53:44:

In Reply to: Re: Interstitial Cystitis posted by Liz on June 12, 1998 at 15:05:05:

The only way a urologist can tell if you have IC is:

by doing a cystoscopy under anesthesia and actually looking
into your bladder to see if there are hemmorages in there
since your bladder lining bleeds when you have IC, they also
do a biopsy (cut a piece of bladder) for the lab, to rule
out all other illnesses/diseases/other causes. There are
many doctors who do not know anything about IC, so you must
find a urologist that is very familiar with it. Need more
info, contact me at my email. I am an IC sufferer since
94. Good luck.


Re: Interstitial Cystitis

Posted by Walt Stoll on June 14, 1998 at 10:30:18:

In Reply to: Re: Interstitial Cystitis posted by Sapphire24 on June 12, 1998 at 21:53:44:

Dear Sapphire24,

You are absolutely right.

NOW, you need to become an expert in WHY you have it so you won't have it any more. This has been discussed so many times here on this BB that I am sure you can find what you need.

Walt



Re: Interstitial Cystitis

Posted by Susan on June 12, 1998 at 23:08:25:

Has anyone out there actually tried biofeedback as Dr.
Stoll recommends to relax the muscle he describes as being
at fault for IC?


Re: Interstitial Cystitis

Posted by Walt Stoll on June 14, 1998 at 10:41:06:

In Reply to: Re: Interstitial Cystitis posted by Susan on June 12, 1998 at 23:08:25:

Dear Susan,

I wish I could claim this "discovery" as my own. It is well known by all researchers in stress-effect.

Since there is no money in teaching but only in treating, you will very rarely hear this from the conventional medical monopoly.

If you will note, I do not recommend that people use the specialized biofeedback probes to resolve this except as a last resort. Awareness of the habitual muscle tension AND discharging the total body load via skilled relaxation is MUCH more effective. However, even those "suffering terribly" tend to continue looking for a treatment rather than learning a skill that could only help them in so many ways.

I guess those still looking (rather than trying) have not yet suffered enough. Please, when you find something simpler that always works, share it with us here on the BB. I will learn at the same time.

Remember, I have had more than 15 years of experience treating this condition conventionaly alone and then 15+ years of teaching patients to get rid of their muscle tension. I KNOW which way works best AND which way I could make the most money.

Why would I bother offering this information if it did not work? I would just make a fool of myself and I make no money whether anyone listens or not.

Walt



IC

Posted by Brenda on June 13, 1998 at 13:15:08:

Dr. Stoll
I believe I'm also suffering from IC. I mainly have trouble with frequency and urgency. It feels like my bladder is constantly irritated. Sometimes I am diagnosed with UTI, but recently there isn't any indication of bacteria. I look forward to reading your new book that I am fixing to order!!! Question, recently I have had some GI discomfort in the "pit" of my stomach - before, during, and after eating - then sometimes the pain will move lower for a while. Do you think this is something entirely different or are these symptoms of IC, too? So many things are interconnected. Thanks for any help. Suffering for 11 years with "bladder pain". Brenda



Re: IC

Posted by Walt Stoll on June 15, 1998 at 11:01:40:

In Reply to: IC posted by Brenda on June 13, 1998 at 13:15:08:

Dear Brenda,

Your tummy pain IS related to the bladder problem but not as you may think. The tummy pain is due to the LGS caused by the "total body bracing" that always causes IC.

Also, once this has gone on long enough, you may develop candida-related syndrome (C-RS) which aggravates both.

I would have to know a lot more about you to give you better information but I can tell you this part right now: in the long run, by far the most important single thing is for you to learn an effective skilled relaxation technique & practice it at least twice a day for 20 minutes (not counting any done within 2 hours of bedtime).

Walt



Re: IC

Posted by Judy on June 16, 1998 at 13:12:23:

In Reply to: Re: IC posted by Walt Stoll on June 15, 1998 at 11:01:40:

Dear Walt,
I am anxious to start the program. My mom has warned me since the start of my IC about Candida. She knew a friend who was suffering with it. Can you tell me about it?


Re: IC

Posted by Jim on June 16, 1998 at 13:22:10:

In Reply to: Re: IC posted by Judy on June 16, 1998 at 13:12:23:

Judy,

While you are waiting for a response, have you read the articles under "Articles on Health" link on the bulletin board page? They are very enlightening. On the Home Page there is much information, including recommended reading. No doubt Walt will suggest that you become a student of your condition, and there's a lot you'll need to read. He will kindly guide you and answer questions, but you are going to have to do the work. Hope these leads help.

Jim


Re: IC

Posted by Judy on June 17, 1998 at 23:43:44:

In Reply to: Re: IC posted by Jim on June 16, 1998 at 13:22:10:

Jim,
Thank you for the help. I am new to this website and I didn't know where to get the information. I didn''t know if Dr. Stoll had a book or if I needed to to go somewhere else for the techniques.


Re: IC

Posted by Walt Stoll on June 18, 1998 at 09:56:04:

In Reply to: Re: IC posted by Judy on June 17, 1998 at 23:43:44:

Dear Judy,

Jim has good advice.

Read the other notes I have today about IC.

To know how much that Candida may be contributing (not an uncommon happening) I would have to know a LOT more about you. See the link about Health Coaching. If you are williing to share your entire health history on the BB (so your healing can help others see that they, too, have options) I do it free.

For your interest: The most common cause of leaky gut syndrome (LGS) IS total body "bracing" which is also the most important cause of IC (directly). Everyone with candida had to have LGS first. Interesting how everything is ultimately interconnected isn't it?

The first thing for anyone to do about this combination is the skilled relaxation so frequently described on this BB.

Walt


Re: Interstitial Cystitis

Posted by Barbara on June 13, 1998 at 14:32:56:

I have had IC for 20 years, had every treatment, went 10 years undiagnosed and now one year from this June 10th I had my bladder removed and replaced with a Koch
pouch at USC. I had the surgery mainly for frequency as I was at 15 minutes and that was real tough to get any sleep at all. I also suffer from fibromyalgia which can sometimes go hand in hand with IC. If any one has any questions, please ask as I been there, done that and that and that, and there are all degrees of IC and how
severe and not every progresses as I did. My sister also has it, I do believe there is a heredity aspect to it with autoimmune type illnesses. Stress plays a big part in the ups and down of IC, not that it causes it but it can really make it worse.

My warmest wishes to all with IC for a better future and some kind of ever lasting treatment. My the way with removal of the bladder I still have spasm and pain, that is why they never recommend this surgery for people who are doing it for pain and if a doctor tells you otherwise, talk to me or I will give you names of doctors to contact if in fact if ever get this desperate.

I have talked to people who are in such severe pain that they have to live on Morphine, I do not have a problem with this and the stigma of pain medication. So you get addicted, is your disease going to go away, then you deal with the medicine aspect. I believe in doing anything you can do mentally, holistically, medically that individual suits the person with the illness, because as I said earlier, no two people have the degree of illness.




Re: Interstitial Cystitis

Posted by Walt Stoll on June 15, 1998 at 11:07:53:

In Reply to: Re: Interstitial Cystitis posted by Barbara on June 13, 1998 at 14:32:56:

Dear Barbara,

Too bad you didn't learn how to resolve this while you still had a bladder. Your fibromyositis is a natural outcome of the same "bracing" that caused your IC. Removing your bladder will not solve that.

I know you don't want to hear that you could have solved this simply; now that it is too late for your bladder. However, now you are going to have to deal with the NEXT message your mind body is sending you about your bracing: fibromyositis. What will you get removed now?

After you get over being angry at me, for having the timerity to say that this was all unnecessary, I stand ready to open the door for you to learn how to help yourself not keep walking down that miserable road.

Walt



Re: Interstitial Cystitis

Posted by Debbie on June 27, 1998 at 19:14:31:

In Reply to: Re: Interstitial Cystitis posted by Walt Stoll on June 15, 1998 at 11:07:53:

Dear Walt,
I don't know if you will read this message or not, but you seem knowledgeable on this condition. I believe I have this condition; I am 43, and in the past couple of years it has gotten worse. It seems to get worse around when my period will start. How do I go about getting treatment? I also have a history of bladder/urinary tract infections, but this seems different; I have been to a urologist several times; he looked at my bladder with a scope then, and said my bladder was red and inflamed; he then wrote me a one month's prescription of anti-biotics to take for it, and it seemed to get better. I also had a kidney stone removed by him; but this trouble with my bladder; the pressure, constantly having to urinate, is getting worse, and I am desperate for help/advice on how to proceed. I do notice that certain things like caffeine/liquor irritate my bladder; but aside from avoiding these things, what can be done? I don't stay up at night with this problem, but it plagues me all day long, when I have it; for up to 2 weeks at a time. Any help you can give me would be appreciated. Sincerely, Debbie


Re: Interstitial Cystitis

Posted by Walt Stoll on June 29, 1998 at 09:30:50:

In Reply to: Re: Interstitial Cystitis posted by Debbie on June 27, 1998 at 19:14:31:

Dear Debbie,

FIRST, you need to learn about this and its causes. By 7/4/98, this subject will be archived (on this BB) to make it a lot easier for you to get started with what you need to know. You need to digest a copy of "Mind as Healer, Mind as Slayer" by Dr Pelletier. You will want your own copy since you will need to re-read it a number of times and it was written about you.

In the meantime, go to my homepage (link on this page) and read about IC.

If you want to start gaining the skills you will need (ALL IC patients need this) also read about the Skilled Relaxation also on the homepage & get the workbook suggested. The earlier editions were much better than the more recent. Ask your library to find you one of the ones published in the late '70s.

THEN, if you still have questions, write again.

Walt



Re: Interstitial Cystitis

Posted by Micki on June 29, 1998 at 15:30:09:

In Reply to: Re: Interstitial Cystitis posted by Debbie on June 27, 1998 at 19:14:31:


Debbie,
I am not sure who this Dr. Walt Stoll is or what line he is feeding you but I will give you some advice from a fellow victim of this disease. I suffered for 31/2 years before dicovering a doctor in South Dakota who has done years of research on this disease. He has found that it is caused by a tough strain of bacteria. Women can pick it up from our husbands, hotubs, pool, baths, or surgeries. The bacteria can be killed with long term antibiotic treatment, 1-2 years. I have been on it for 4 months and my world is almost back to normal. I drank some lemonade and pop yesterday and am doing quite well. The doctors name is Dr. Fuzagotto and he is a retired microbilogist. If this is not caused by a bacateria then why did you get better after 1 month of being on the antibiotic. Think about it. You can contact him through the yahoo search engine. Another place to look on that engine is the ICIC. A lady by the name of Kay Benton runs this organization and is a former sufferer. She is a great resorce. Your problem is not caused by stress, or tension is muscles, but a little organisms that got into your bladder and it is inflamed. I will try to check this board often if you need further help. Please contact Dr. F and get your life back.


Re: Interstitial Cystitis

Posted by Jim on June 29, 1998 at 18:09:39:

In Reply to: Re: Interstitial Cystitis posted by Micki on June 29, 1998 at 15:30:09:

Micki,

The name is spelled Fugazzatto, and Yahoo lists only this article. I will try to add it as a link here. If it doesn't work, anyone wanting to read it will have to type in the following.

http://prostate.org/lateseptember/interstitalcystitis

The link to Dr. Fugazzatto at the ICIC site does not work. I have notified them.

Do you have any experience with the physical therapy they recommend of the vitamins they peddle at that site?

Thanks for the info

Jim





Re: Interstitial Cystitis

Posted by Micki on June 30, 1998 at 20:11:56:

In Reply to: Re: Interstitial Cystitis posted by Jim on June 29, 1998 at 18:09:39:


Jim,
As luck would have it, I am a physical therapist and have tried many techniques but to no avail. I take the vitamins they offer and found within a few weeks that my energy lever had increased greatly. Got to watch the beta carotene though or your skin will turn yellow! Thanks for adding his link to this site. I think this treatment can help many who suffer needlessly.


Re: Interstitial Cystitis

Posted by Barbara on June 15, 1998 at 18:24:13:

Walt,

I guess I can say I do take offense to your comment. I spent 20 years with IC, researched and tried everything possible, went as far as money could take me, tried holistic to everything imaginable.

The frequency for me at least 20 times a night gave me no life. I could not drive. I live 45 miles from the nearest town. I became home bound. Now I live with pain of IC and spasm as that did not go away, but again I went into this with realistic expectations and that was the frequency.

As far as my FM is concerned, I deal with that through pain management, prayer, medication and hope.

I am no dummy to these illnesses, I have ran a support group for FM and chronic fatigue syndrome and now IC for over 10 years.

Dont judge, as I have found in meeting so many with the support groups, all people are different and what they can deal with are too. Pain is something no one can measure nor the quality of life they are living.

I do not go a day where people dont tell me how wonderful I look, I feel that is their fear of the unknown since I have been sick for so long and also genuine want for the best.

I have never recommended to anyone to have the surgery I have done. This is a very individual decision and has to be made with a lot of knowledge and the right expectations. I knew the disease would not go away, but sitting at my daugthers baseball game and going to the movies or traveling in general, this surgery has made a great impact on my life. Please think a little before you judge.

Barbara


Re: Interstitial Cystitis

Posted by Walt Stoll on June 17, 1998 at 10:22:03:

In Reply to: Re: Interstitial Cystitis posted by Barbara on June 15, 1998 at 18:24:13:

Dear Barbara,

I appreciate your taking the time to write. I KNOW how much you don't want to think that, with all you HAVE done, that there still is something that you have not--that would have resolved your problem.

Unless you really think that we already know everything there is to know--or that IC is the one thing that will NEVER be resolved, you have to realize that eventually everyone with IC will have to face what you are not liking to hear: There IS a solution & you have not yet tried it.

Before you judge me for judging I would remind you that I practiced conventional medicine for 10 years, and then taught it at the medical school for 3 years, before I learned how ignorant I really was & learned about alternatives--I am still learning.

The first 13 years, I never "cured" a case of IC although I treated many. The last 17+ years of my pracitce I never failed to resolve a case of IC IF the person was willing to learn and to discharge their perineal muscle bracing.

There WERE many with the same resistance you are demonstrating who would not learn and they--so far as I know-- still have their IC. You see, the problem is not that this is not the cause & keeping the perineal muscle relaxed is not the solution. The problem is getting people to learn something new to their experience.

I know that you don't like to hear me being blunt about this. I am not here to make you like me. I make nothing by your getting well other than the "treasures more precious than gold" mentioned in the Bible. What possible reasons would I have for sticking my neck out except to share what I know to help people?

I KNOW that you never checked out any of your relaxation techniques to prove that you were actually reaching an alpha/theta rhythm. Even if you actually WERE reaching that state (accidentally) you never practiced it at least twice a day for 20 minutes (not counting any done within 2 hours of retiring) for a minimum of 6 months.

I have had experience with dozens of patients how many have you managed?

I have a right to "judge" because I have done my work in the trenches.

Walt



Interstitial Cystitis: ready to start program

Posted by Judy on June 17, 1998 at 23:38:39:

In Reply to: Re: Interstitial Cystitis posted by Walt Stoll on June 17, 1998 at 10:22:03:

Hi Walt,
I was wondering if you received my BB message about being ready to start the relaxation method. I can sense how tight I hold my pelvic muscles. I receive myofacial treaments of the leviator ani muscles and want very much to start the relaxion program. I just need help on how and when. I also need to know if I should reduce the pain meds before I start or after. I am very anxious to do everything in my power to help myself. If you have really been able to help fellow IC sufferers I believe I can be helped as well. Hope is a very imporant part of healing and this site has given some of that back to me.
I need to know what to do now. I am new to this BB and am ignorant to what I need to do next. Thank you for your help.


Re: Interstitial Cystitis: ready to start program

Posted by Walt Stoll on June 19, 1998 at 10:10:43:

In Reply to: Interstitial Cystitis: ready to start program posted by Judy on June 17, 1998 at 23:38:39:

Dear Judy,

A copy of my book would probably be the fastest way to get a handle on this (link on this page).

Go to the link: Skilled Relaxation and get the reference listed therein.

Write with any more questions. Keep up the levator ani therapy.

Walt



Re: Interstitial Cystitis

Posted by Linda Dunn on June 15, 1998 at 19:31:05:

I was diagnosed with IC in June of 97, and I have tried numerous medications with little signs of relief. Among these medications, I've tried Elmiron, Elavil, DMSO, Hytrin, Flomax, Cardura, etc. I am also seeing a physical therapist and using a TENS unit for pain. I find that the TENS unit provides some relief, but is there anything out there that anyone has tried that truly helps? I am at my wits end. The doctors I've seen just keep telling me that they will hit on a medication that will help, but I'm losing faith.



Re: Interstitial Cystitis/ALAN BERRY

Posted by DIAN on June 15, 1998 at 22:25:17:

ALAN:
I LIVE IN METRO ATLANTA AND IT IS EXTREMELY DIFFICULT TO FIND ANY DR. THAT HAS MUCH KNOWLEDGE ABOUT THIS DISEASE. I WAS DIAGNOSED WITH IT NOV 97 AND AM IN CONSTANT PAIN. I, TOO, HAVE THE BLADDER INSTILLATIONS EACH WEEK AND HAVE SINCE NOVEMBER, I HAVE ALSO HAD A HYDRODESTENTION. NOTHING MUCH SEEM TO HELP. YOUR WIFE SHOULD TRY THE ELMIRON (ONLY FDA APPROVED DRUG IN THE U.S.), I HAVE HEARD OF MANY POSITIVE RESULTS FROM MANY PATIENTS. I, UNFORTUNATELY CANNOT TAKE IT, I ONLY RECENTLY FOUND I WAS ALLERGIC TO IT BUT I AM AN EXCEPTION. I WOULD BE HAPPY TO TALK TO YOUR WIFE AND LET HER KNOW SHE IS NOT ALONE. IT REALLY DOES HELP TO HAVE SOMEONE TO TALK TO ABOUT THIS. GOOD LUCK AND DO NOT GIVE UP HOPE!!



Re: Interstitial Cystitis/ALAN BERRY

Posted by Erik Saring on June 19, 1998 at 00:21:53:

In Reply to: Re: Interstitial Cystitis/ALAN BERRY posted by DIAN on June 15, 1998 at 22:25:17:

I was recently diagnosed with IC. I would appreciate any helpful information to help me reduce my voids. I urinate about 20 to 30 times a day. A major incovenience as you know. I hear there are dietary solutions. This EMLIRON presription sounds interesing. What are the side affects of this drug?

Please help me - I am very intersted in helping find a solution to this disease. I am prepared to donate to the cause.


Re: Interstitial Cystitis/ALAN BERRY

Posted by Walt Stoll on June 20, 1998 at 10:44:09:

In Reply to: Re: Interstitial Cystitis/ALAN BERRY posted by Erik Saring on June 19, 1998 at 00:21:53:

Dear Eric,

The solution to IC will never be something one TAKES but something one DOES.

Go to the link: Interstitial Cystitis. Also go to the link: IC archives and read everything you can find about IC.

Although individual histories would make any approach more specific to THAT person (see the Health Coaching data that would be needed--free if done publically) the one common denominator that all IC people have to do is the skilled relaxation at least twice a day for 20 minutes (not counting any done within 2 hours of retiring).

I would be happy to work with you. Donations to help with expenses are gratefully accepted since I have no income. This service is a love offering to my species.

Walt



Re: Interstitial Cystitis/ALAN BERRY

Posted by Susan on June 20, 1998 at 13:11:00:

In Reply to: Re: Interstitial Cystitis/ALAN BERRY posted by Walt Stoll on June 20, 1998 at 10:44:09:

I had bladder trouble and went thru cystoscope, bladder irrigations, stretching bladder under ansthesia, and I got worse. Went to different dr. who said was interstitial cystitis. This was in 1986. Diet helped me most. Don't drink or eat too much acid foods. Lay off coffee (except Kava), no orange juice, no carbonated drinks, no alcohol, no tea, no tomato gravies. Drink lots of water when having problems. DO NOT DRINK CRANBERRY JUICE. Makes it worse! Dr. Hatcher told me taking antibiotics can cause this by eating away the lining of the bladder which causes anything acidic to literally burn your bladder insides. The first thing he did was to stop me (gradually) from taking antibiotics which the other urologist made me take. When I have problems, I watch my diet and drink water and usually get better without medical help.


Re: Interstitial Cystitis/ALAN BERRY

Posted by Walt Stoll on June 22, 1998 at 12:01:37:

In Reply to: Re: Interstitial Cystitis/ALAN BERRY posted by Susan on June 20, 1998 at 13:11:00:

Thanks, Susan,

I would add that till you learn to discharge the tension in your levator ani, you will continue dealing with this condition which you are still just controlling.

There is nothing wrong with what you are doing. What works for you works for you. However, up to now, you are missing the most important thing you can do.

By the way, I would like to see a copy of the research that says that cranberry juice can "eat away the lining of the bladder & make this worse". OR, did I misunderstand what you wrote?

Walt


vvd

Posted by Valeria on June 17, 1998 at 13:20:27:

Doctor Stoll,
I have been experiencing painful sex since I first lost my virginity at 18. (tampons are also impossible without extreme pain) I am now 30.Could you please tell me what you know/what you suggest to someone who has vulvar vestibulitis, the condition I have been diagnosed as having? I decided to confront the problem and discuss with a gynecologist about a yr ago. I received a pat on the head with an acknowledgement that yes, I was a bit inflammed, but not to worry, to pop a few pills (forget the prescription) and to relax during sex. i was angry, unsure, and insecure about his diagnosis--or lack thereof. Once again, I put the problem under the rug until several months ago after another painful experience ( I hadn't slept with someone for a long time). In any case, I knew that now was the time to finally once and for all find out the source of my problem and confront it. After only a couple of hours of research I was almost positive that I had nailed the problem : vulvar vistibulitis which means that the vestibular tissue at the entrance ofthe vagina is continuously inflamed. Some folks get it after major surgery, after severe vds or its genetic and/or inherent as in my case I believe since I ve had this since day one. I researched a pyschologist who specializes in treating this condition by bio feedback. To be frank, I don't quite understand the link, but he contends that weak pelvic floor muscles cause this chronic inflammation. Sure enough, I was hooked up to one of these biofeedback machines and asked to do contractions and I failed miserably in both the Strength and duration of these contractions. This doctor is definitely respectable--in fact I have read about him in several mainstream publications (I'm beginning to discover vulvar vistibulitis and vulvadynia--its cousin--is much more common than I thought)and in other places. Were I to go through a treatment under his care, it would be costly and of long duration, with no guarantees. Some woman have seen improvemnets, others haven't. I recently read an article by a woman in Fitness Magazine who went and saw him, gave up after a few months of treatment (though she does not question his success for some women, and ultimately opted for surgery where part or all (wasn't clear) vestibular tissue is removed. End of story is that she is now able to enjoy sex. My inclination is to go under the scapel and get get it over with and very belatedly (I am 30) start to enjoy sex. I would welcome your input and from any other BB member who is familiar with this condition. On a separate note, I am one of the suckers conned into taking accutane afer a serious and sustained flareup last fall (I mean, all my friends were wondering what the hell was happening to my face). After prolonged visits to docs and atempts to figure the problem, the dermatologist threw the towel in and put me on accutane. For the most part its worked though I still have vestiges of it on hte chin area. After instructing myself on your BB my gut feeling tells me that its going to return but hey, I'll deal the right way this time. In any case, back in the fall, just around the same time, I developed swollen lymph nodes. I was utterly convinced that the acne and the swollen lymph nodes were somehow connected. Two dermatologists said, nah, dont worry. Sometimes, you get an infection and the lymph nodes remain swollen...some never dissapear. Well, although they have subsided, I still have two small lumps..and I remain convinced that there's a link. Would you agree? many thanks for hearing me out.


Re: vvd

Posted by Walt Stoll on June 19, 1998 at 09:37:27:

In Reply to: vvd posted by Valeria on June 17, 1998 at 13:20:27:

Dear Valeria,

You already know more about this than your conventional docs! Congratulations for not giving up on yourself.

What you have is called vaginismus and the inflammation is caused by the TIGHT muscles in the area. Your biofeedback guy has a handle on part of the problem but what he does not realize is that the muscle weakness is due to the muscle (levator ani) having been spastic for many years (24 hours a day). Try holding ANY muscle contracted even for a few hours & you will find that it cannot be consciously contracted at all.

At least the biofeedback doc realizes that this has something to do with muscle contraction of the levator ani. What he has not yet tumbled to is that the solution is getting you to keep it totally RELAXED all the time like it is supposed to be; rather than having you learn to contract it!

I would be happy to talk to him if he wants to call me at my home. I could email my number to you if you would FAX me your address at (850) 769-1436. Be sure to FAX me what you need at the same time since I get many requests.

In the meantime, the only thing that is going to resolve this is for you to learn an effective skilled relaxation technique & practice it at least twice a day for 20 minutes (not counting any done withinn 2 hours of retiring). Within 6-12 months, enough of the habitual tension in this muscle will have been discharged for you to be normal so far as the vaginismus is concerned. Surgery will just cut some of the muscle. The problem will recurr within a year or so because surgery does nothing about WHY this is happening so it will continue.

HOWEVER, in the meantime, you would be wise to become a student of all this. Having had "bracing" to this extent for so many years, you very likely already have developed leaky gut syndrome and parasitosis (secondary to the LGS), both of which help to aggravate your vaginal infections now that they have been precipitated by your muscle tension.

The doc who told you that you just needed to relax with intercourse WAS onto something. However, once you have this to this extent, that advice has no value. You have to discharge the stored tension before you can think about "relaxing during the act".

This is an easy one. Please write with any more questions.
I can give you many resources to learn more about this if you desire.

Walt



Re: vvd

Posted by David on June 19, 1998 at 12:50:23:

In Reply to: Re: vvd posted by Walt Stoll on June 19, 1998 at 09:37:27:

I would like to add a note concerning my friend's experence with caffeine and sex. She has been a long time coffee drinker and experienced discomfort during intercourse but has noticed a sharp improvement since she has given up the coffee. Her results were noticed within a few months.

Her improvement could have of course been related to another factor but there seems to be a strong likelihood that this helped in her case.

David


Re: vvd

Posted by paul on June 19, 1998 at 21:15:36:

In Reply to: Re: vvd posted by David on June 19, 1998 at 12:50:23:

Does this apply to gay men with anal sex too?


Re: vvd

Posted by Walt Stoll on June 21, 1998 at 11:13:56:

In Reply to: Re: vvd posted by David on June 19, 1998 at 12:50:23:

Dear David,

Since chronic bracing ot the levator ani is the most common cause of painful intercourse, and caffeine specifically increases muscle fiber tension, I am not surprised at the connection.

HOWEVER, for this to be enough to push her over the edge into having symptoms, she has to be living very close to the threshold all of the time. Rather than just giving up caffeine, she would greatly profit by learning WHY she is living close to the "bracing" edge.

If she does nothing but give up caffeine, the day will come when she has the problem even without caffeine.

Walt



Re: vvd

Posted by Walt Stoll on June 21, 1998 at 11:36:41:

In Reply to: Re: vvd posted by paul on June 19, 1998 at 21:15:36:

Dear Paul,

Given proper foreplay, the answer is a resounding YES!

Walt



Re: vvd

Posted by valeria on June 22, 1998 at 15:30:20:

In Reply to: Re: vvd posted by Walt Stoll on June 19, 1998 at 09:37:27:

Dr. Stoll: Many thanks for your reply. I will indeed send you a fax.
I fully heard you on your point that I need to learn relaxation techniques. 1. I am most willing to proceed. Where do I begin? Whose techniques do I embrace? 2. Are you referring to "localized" relaxtion techniques or more encompassing ones. I am particularly interested because I do believe that I could benefit from relaxtion techniques for diagonsed social phobia (I am a professionally successful woman and quite outgoing but I often get ridiculous panics when being the center of attention both professionally and sometimes in the most innocuous of social circumstances--this BTW, a most summarized version of my case) and my acne which I wouldn't be surprised if stress-induced. So to conclude, would the relaxtion techniques be general ones as a "cure all" so to speak or would I have to work with various types depending if geared to vaginismus or to general wellbeing.
You mention LGS. No offense but I let out a groan at that, only because I've read enough of your bb to know that thre is no succint definition/solutions and that I have much reading/research to do before I get a grip on it. Argh! In any case, unless I misundertood you, you make a correlation between LGS and vaginal infections of which I have none whatsoever. Lastly, I asked in my original note, if you thought there was a link between swollen lymph nodes and my accutane. You were kind of enough to go into detail about the original topic that u forgot to address that. Thank you in advance.


Re: vvd

Posted by   on June 22, 1998 at 16:05:33:

In Reply to: Re: vvd posted by valeria on June 22, 1998 at 15:30:20:

You wrote: You mention LGS. No offense but I let out a groan at that, only because I've read enough of your bb to know that thre is no succint definition/solutions and that I have much reading/research to do before I get a grip on it. Argh!

I'm surprised to read this. Please take a look at the article on Leaky Gut Syndrome on the main page of this website. That seems a very succinct definition to me. The solution also seems quite straighforward - practice skilled relaxation (as outlined) to give your gut a chance to regenerate. Pages 67-74 of Dr Stoll's book go into more detail on this subject. For more about skilled relaxation, follow the link.

If you have questions or need clarification, please ask away!

Peace,
Bill


Re: vvd

Posted by Valeria on June 22, 1998 at 16:17:50:

In Reply to: Re: vvd posted by Bill on June 22, 1998 at 16:05:33:

Bill, Gotcha. I'm onto it. Thank you.


Re: vvd

Posted by Dad on June 24, 1998 at 10:02:08:

In Reply to: Re: vvd posted by Bill on June 22, 1998 at 16:05:33:

Thanks, Bill.

You answered better than I could have. In nearly every case of these interrelated chronic conditions, the one thing that ralates to them ALL is the skilled relaxation.

Namaste` Dad



Re: Interstitial Cystitis

Posted by B. Marsh on June 22, 1998 at 11:18:41:

There must be something to diet causing interstitial systitus. I suffered for 6 years. during
this time I suffered daily, missed a lot of work, had one unnecessary operation, and retired
early. Doctors also told me its cause was not known and there was no cure. In desperation
I went to a place in Peoria Hgts, Illinois called Options Center (309-685-7721). It is run
by a lady named Helen Cox. She took a sample of my hair which she then sent to a lab to
be analyzed. Two weeks later we discussed the results. Itís amazing what she can tell you
about yourself from that hair analysis. She showed me how my body chemistry was
reacting to my current diet and what I needed to do to bring it into balance. However, she
also told me she thought I was allergic to grains and wanted me to remove all grains and
baking ingredients from my diet. Within two weeks I was feeling much better. Itís now
two months later and I donít have any of the many symptoms I had previously.



Re: Interstitial Cystitis

Posted by Walt Stoll on June 24, 1998 at 09:36:09:

In Reply to: Re: Interstitial Cystitis posted by B. Marsh on June 22, 1998 at 11:18:41:

Dear B.,

ALL aspects of "wellness" have something to do with IC. The reason I have been focussing on the tension in the levator ani is that that is the one factor that will benefit the highest % of IC patients.

Unless you learn about that factor, eventually diet alone will no longer control your condition. Of course, ALL partients with IC have gereralized muscle tension (the basic cause of the levator ani tension) which is the most common cause of leaky gut syndrome--the most common cause of food sensitivities.

Isn't it interesting how this all fits together????

Walt



Re: Interstitial Cystitis

Posted by Vicki on June 24, 1998 at 14:34:50:

In Reply to: Re: Interstitial Cystitis posted by Walt Stoll on June 24, 1998 at 09:36:09:

I have IC but not the bladder pain, just the frequency issue which is bad enough. I would be interested to know if Elmiron targets the pain issue, the frequency issue or both. I used to visit the bathroom 60 times a day. I eventually forced myself to retrain my brain's response to the problem. I gradually slip back and have to retrain but it does help. it seriously disrupts my sleep and that is the most difficult time to ignore the urge. I wake up every 2 hours, about the length of time I can force myself to hold out during the day. Have others experienced this?





Re: Interstitial Cystitis

Posted by Walt Stoll on June 26, 1998 at 10:37:03:

In Reply to: Re: Interstitial Cystitis posted by Vicki on June 24, 1998 at 14:34:50:

Dear Vicki,

It takes a LOT less effort to get rid of your total body bracing (and incidentally the levator ani bracing that is the smoking gun of the bladder problem) than what you have already done and will continue struggling with.

There are many treatments and medications that will give temporary relief. However, what we can predict is that these reliefs will BE temporary until the lavator ani is relaxed all the time.

Walt



Re: Interstitial Cystitis

Posted by Adams on June 24, 1998 at 16:57:29:


Hello my wife has been suffering from cystitis for several months and nothing seems to work if you could contact us and help we would greatly appreciate it. she has taken many antibiotics such as macrobid 100 mg -levbid 0.375 cr -cipro 250 mg- phenazopyrid 200mg-nitro macro 100 mg-second dose cipro 250mg-urised-third dose cipro 250 mg-and detrol 2mg and also she had a bladder distension on may 19th 98.have tried cranberry pills from health food stores but nothing seems to help. Maybe you can give us some insight. Thank you very much.


Re: Interstitial Cystitis

Posted by Jim on June 24, 1998 at 17:06:19:

In Reply to: Re: Interstitial Cystitis posted by Adams on June 24, 1998 at 16:57:29:

Adams

If you click on the "Ask Dr. Stoll" link at the top or bottom of this page, and then click on the "Articles On Health" link, you will find Dr. Stoll's views on IC. You might also scan down the postings on the bulletin board and check the archives to bring yourself up to speed.

Jim



Re: Interstitial Cystitis

Posted by Yvonne on June 24, 1998 at 23:51:32:

In Reply to: Re: Interstitial Cystitis posted by Adams on June 24, 1998 at 16:57:29:

Hi Jim,

I have had Interstitial Cystitis for 2 years. It was many months before it was diagnosed. My doctor decided to try something different when other methods did not seem to work. What he gave me was a godsend. I now have almost no symptoms. I am taking:
nitrofurantoin 50mg 2/day
hyoscyamine 0.125mg 4/day
hytrin 2mg 1/day (evening)

The only problem I have is a very dry mouth and skin but that is certainly much better than the constant pain of the other.


Re: Interstitial Cystitis

Posted by Walt Stoll on June 26, 1998 at 10:57:27:

In Reply to: Re: Interstitial Cystitis posted by Adams on June 24, 1998 at 16:57:29:

Dear Adams,

Use the archives & read everything you can find about interstitial cystitis. If it sounds like this may be her problem, let me know & follow the path of information to her resolution. If not, I would need to know all the information listed on the homepage about Health Coaching (link to the homepage on this page). If this is done publically I would be happy to do it free since my main goal is public education. If there are things she would not want to be shared pubilcally, I can do it privately but the HC protocol would explain what that would cost. ANY omissions would greatly reduce my ability to see a pattern that would explain why she has what she has.

Let me know if I can help more.

Walt



Re: Interstitial Cystitis

Posted by Walt Stoll on June 26, 1998 at 12:20:17:

In Reply to: Re: Interstitial Cystitis posted by Yvonne on June 24, 1998 at 23:51:32:

Dear Yvonne,

NOTHING you are taking can do more than cover up some of your symptoms. When they inevitably stop working you will have to find others.

The time to learn how to resolve this is while the present medications are still working. FIX THE ROOF WHILE THE SUN IS SHINING.

Walt



1998: Apr May Jun

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