Judy and Others,
Like Judy I am 23 years old and I was diagnosed with IC two years ago in October. I was always having stabbing pains in my lower abdominal area and running for the bathroom. My Md told me I kept getting bladder infections but catching them before anything would show up on test. Well for about 6 months I had about 9 "bladder infections" I was living on antibiotics. Finally with the help of a understanding doctor and family I decided to find out what was wrong. I went to a Urologist and had a bladder hydroextension and bx done, along with tons of other test. The doctor told me I had IC gave me a paper on it and told to follow a special diet. Well a month later I returned to the doctor and asked for more help. I was given DMSO treatments which burned my skin and caused me to bleed for days after the treatment. I had about two months of these (bi-weekly) and told the doctor no more. The doctor told me I needed more treatment to see the benefits! Ha Ha. I never went back to that doctor. I then happened upon a specialist in my area and I went to them for help. This doctor was wonderful. I went for physical therapy and was put on Elavil 30mg a day. It has been about 6 months since I have been to the doctor I feel wonderful and am very happy. When I was told I had IC I told myself I would overcome, yes somedays are worse then others but I believe in a positive attitude and looking for the next good day. I do not let the thing run my life. I eat what I want and drink what I want, yes sometimes I pay for it but I keep going. Good luck
Shannon
In Reply to: Re: Interstitial Cystitis posted by Shannon on August 01, 1998 at 01:14:19:
Dear Shannon,
Thank you for your testimonial. Why do you think the physical therapy and Elavil (antidepressant with some sedative side-effects) helped you?
It is because IC is caused by "bracing" of the levator ani muscle due to total body bracing due to overwhelming stress-effect storage in the hypothalamus. You are in the fight or flight mode ALL the time!
I have been trying to tell people about this for years on the internet. Your testimonial will likely convince more people than all I have been able to say.
Your present treatment, if you do nothing else, will eventually fail since it does nothing for WHY you have this.
Since people rarely do anything to help themselves unless they are suffering, and you are so satisfied with your temporary benefits, the likelyhood of YOUR taking this seriously is low.
I would suggest you print it out & put it in a file where you can find it when your symptoms inevitably recur. Then, at least you will have the info at hand as to how to finally resolve this. Get a copy of Dr Pelletier's classic book: "Mind as Healer, Mind as Slayer" and read it several times.
If you actually decide to pursue this now, write again on this BB & I will be happy to answer any questions (after you have gone to the archives and FAQ page & read about IC).
Thanks again for your enlightening note.
I am aware that you might get angry for me suggesting that your problem has not been resolved. Time will tell. AlI I can do is be compassionate enough to try to tell you the truth.
Walt
In Reply to: Re: Interstitial Cystitis posted by Shannon on August 01, 1998 at 01:14:19:
I read all of your posts on I.C. and about the Pelvic Floor Trainer and my question to you is does this device help stop the pain in the lower back as well as the front? I am going to call and get the directions mailed to me first. I have been dealing with this for 2 years and I am willing to do whatever it takes to lessen the pain. Also I have referred some women to your articles. Thank you for your help. This is not a follow up but I did not know for sure how to submit my question to you since your computer is crashed I may not remember to try again on the 18th. Thanks for your help
Michelle
In Reply to: Re: Interstitial Cystitis posted by Michelle Thompson on August 16, 1998 at 20:19:46:
Dear Michelle,
I am struggling to keep up as best I can by going to my sister's & accessing the 'site from there. I am hoping that most people will take mercy on me & post stuff after things can be done from my desk where I have all my references.
As far as I am concerned, the most effective AND least expensive way to do this is by discharging the total-body bracing & becoming consciously aware of the tension in the levator ani (which usually is obvious once the rest of the body's tension begins to dissipate).
The only reason I mentioned the rectal or vaginal biofeedback probe is that some people need mechanical proof before they will even try anything. The probes will work but the problem will tend to recurr since the levator-ani tension is but an aspect of the total-body bracing.
Bad news orf the day is that I will not get my 'puter back for at least 72 hours after they thought last week (see new note by Bill on the BB).
Walt
Oh. Boy, Becky, Oh, boy.
Well, the place for you to start is at the beginning. Go to the link: IC archives and read everything you can find about interstitial cystitis (archives are up to the last 2 months so you will find more by searching the BB for June & July). Be sure to read the resources listed.
THEN, if you still have questions, write again. The levaror ani is the muscle that keeps all of your guts from falling out the bottom of your pelvis. It is the muscle that includes the voluntary bladder sphincter, rectal sphincter & vaginal sphincter.
Walt
In Reply to: Re: Interstitial Cystitis posted by Walt Stoll on August 01, 1998 at 10:22:14:
Hi Dr. Stoll,
Follow-up and a few new questions for you.
I have been doing deep breathing now for a few weeks. I am having trouble getting 2 20 minutes sessions daily but I have been doing the breathing periodically several times during the day. I find that I fall asleep after 10 minutes most of the time. Do you think I can still get some positive results from doing it this way? Then, I am now feeling some fatigue in my abdominal muscles, it is like I can now feel how tight they are and I get a feeling of releif when I relax them. Is this a good sign that I am doing something right or wrong? Thanks for your help.
Micki
In Reply to: Re: Interstitial Cystitis posted by Micki on August 18, 1998 at 09:41:54:
Dear Micki,
From your present experience, it is likely that this will help you a lot. Beginning awareness is one of the constants people notice when their "relaxation" is working.
If you fall asleep, you will NOT get the long-term effects you are looking for to "cure" this. All you will get is more of the same that you are presently experiencing. That is fun but not veny curing.
It is easy to keep from falling asleep. Just hold a large serving spoon or a paperback book in your hand while you do what puts you to sleep. THEN, if you slide into delta (asleep) your muscle control wil go & you will drop it. This will be enough to alert you to the fact that you went to sleep. Just pick it back up and go on with your practice. Eventually, you will learn what it feels like to be in this state and you will not need to hold something in your hand.
Let us know how you do.
Walt
Tracy, I know what you are going through. There is an over the counter drug called Prodium. There is another brand if you can't find it. This does not cure the problem but helps with the symptons. This is not something you want to take for a long time but it might at least give you a pleasant vacation. I don't know what Ditropan is but I sure wouldn't try the Prodium while taking this without consulting a doctor. Good luck.
I have exactly the same symptoms as Tracy. My urologist wants me to schedule a cystoscopy but I have only heard negative results froom other people. I'd like advice on whether or not to have the procedure or try pursuing the pelvic floor muscle exercises another urologist suggested looking into.
I'd also like to know if the Prodium really works.
Thanks
In Reply to: Re: interstitial cystitis posted by k on August 04, 1998 at 21:48:58:
Dear k,
If you have not had at least one cystoscopy, you need to do so since there are other conditions that can look like IC & you need to have a definitive diagnosis.
Frequently the dilation created by the cvystoscopy will give you temporqary relief since it is the voluntary contraction of the levator ani that holds the urethra closed & causes IC. Of course, this benefit will be short-lived because you will just go right back to habitually contracting this muscle.
When you are ready to actually get rid of this, go to the archives & read everything you can find about IC (also on the FAQ page).
THEN, if you still have questions, write again.
Walt
Walt,
I was perusing the Web Page under net search and discovered your segma of Interstitial Cystitis (IC). Recently I went to my doctor for a urine test and it indicated I had blood in my urine. Immediately I was prescribed an antibiotic and began treatment. A few days later upon completing my prescription I still appeared to be having UTI symptons. So I went in and had a follow-up visit. They administered a clean catch test and the results indicated white blood cells were present. I asked the doctor what the white cells were and what did that mean. She said "This indicates contamination, and we will run a culture to see if bacteria grows." The results came back negative. I'm no doctor but shouldn't she have started treatment when the results indicated "white cells were present during my follow up."
She did not prescribe antibiotics and said if symptons continue come in and they would run other tests. She was rather vague about what tests would be performed. Furthermore, I have an appointment scheduled this afternoon to check for UTI infection among other tests.
I'm beginning to wonder about the lack of medical knowledge in my doctors office.
Can you please address my issue of concern regarding the "White cells" issue. What does that mean when they are present in the urine? Feeling confused
Thank you
D. Campbell
In Reply to: Re: Interstitial Cystitis (IC) posted by D. Campbell on August 05, 1998 at 12:01:20:
Dear D.,
Red cells, without white cells, in the urine do not indicate an infection &, in MY opinion antibiotics were not indicated at that time. As a matter of fact, since the normal bacterial inhabitants of the gut are one of the major ways we protect ourselves FROM infections, the antibiotics in the beginning could only make you worse-----which they did.
Presence of WBCs in the urine is an indication of bacterial infection (which was not there before the antibiotics). Since you were relatively asymptomatic for the followup specimen that showed the WBCs I would think you should wait for the culture to start any antibiotics since they routinely test to see which antibiotic is most likely to work when they do the culture. Once an antibiotic has been used it is difficult to get any of the causative germs to grow (this is the most likely reason why nothing grew)----just another reason why antibiotics should not have been used in the beginning.
NOW, the real reason for the RBCs, in the beginning, has been masked by treatment. There are many causes of RBCs in the urine and they need to be diagnosed. Everythng from stone to IC, to cancer of the bladder, to congenital or inflammatory conditions of the kidney can cause blood without WBCs in the urine.
Most urologists would do a lot of testing when presented with a patient with only RBCs in the urine BEFORE doing ANY treatment-----for the very reason that s/he would want to avoid the trap in which you now find yourself. Unfortunately, s/he will never criticize the bungling of the generalist for fear of jeopardizing future referrals. Knowledge will set YOU free.
By the way, your WBCs could not be caused "by contamination" whereas spurrious bacteria in the specimen could. The WBCs came from YOUR body's response to something.
If I were you, I would get a copy of my records and insist on seeing a urologist in consultation. You may get resistance by your doc since s/he knows how this has been handled sloppily and will be loath to expose such to any other professional. You need to insist, knowing that s/he will recommend the doc least likely to say anything bad about what has been done already.
You need a good diagnosis of what happened in the beginning to cause the RBCs. Unfortunately, the botched treatment will make it more difficult for the urologist but it still should not be too difficult.
Let us know what happens.
Walt
I have a Question! My mom has Intertitial Cystitis and she has ben taking the DMSO treatments Since Nov.4 97' ! We have heard alot Of bad things about the dmso! We have heard it can dislove the spine and hurt the eye sight Can you help me out with what is going On???
In Reply to: Re: Interstitial Cystitis posted by Amanda on August 05, 1998 at 22:21:28:
Dear Amanda,
DMSO is among the least toxic substances used by physicians. It is bad-mouthed because it is too inexpensive to make a big profit on. Read what is in your local library!
HOWEVER, having said that, when your mother is ready to put this condition behind her, have her read the archives on this 'site about the cause & what she can do to get rid of it.
Then, if she still has questions, have her write again. This is something SHE will have to learn. No one else can do it for her.
Walt
Dear Walt,
My Naturopath told me that my urine test showed a moderately severe bladder infection. He tested me for Candida antibodies (I think this is what it was) and this showed a high level of them too. Does a 1.0 mean anything to you? I
will see him soon and ask.
He told me to take cranberry capsules (I can't drink cranberry juice) and this seems to be helping already.
I was amazed. I am also drinking a tea of Uri Uva. He
wanted to try this first for a week and if there is no
improvement he said I may need to take an antibiotic but
I will have to be careful with the Candida.
I am doing the skilled relaxation EVERY day and feeling so
much calmer. I hope I can try Rolfing in the future. I will
wait until I discuss it with my osteopath when he thinks
I might be able to start that. I will have to wait until
I can afford it too. I have many medical bills.
I love the BRAINSYNC tapes. I am so happy I found them
It is easy to relax and meditate with these.
It is my understanding that holding stress in the pelvic
region can cause you to be prone to these infections. I also
have hemoroids but these have improved with the meditation
and all the other things I am doing.
Just wanted to know if you have anything to add. I was
surprised to find out I have an infection. I have some
cramping in my lower abdomen but not much pain. I was
EXTREMELY tired. Sometimes I felt heat in my lower
abdomen and some pain.
I am not so tired now that I am taking the cranberry
capsules and the tea.
Thanks again for all your help!!!!!
peace and love,
pamela
PS When I first came to this site, I was VERY sick and very
scared. I was desperate. I am not completely well yet but I
am feeling better and better. I have found many alternatives and have hope again. It took time for me
to read your book (over and over) and RELEARN about health
and healing. This has led me to other books and magazines
about alternative healing and to NEW practitioners that
care and are helping me heal.
Thanks!!!!
In Reply to: Bladder infection posted by Pamela J on August 07, 1998 at 03:48:32:
Dear Pam,
Sounds like you are well on your way to resolving this. In the meantime, stick with the docs you have found since it will take you about a year to be totally free of any relapses.
Congratulations on your progress.
Namaste` Walt
Hi,
I am a 23 year old female recently diagnosed with I.C. I have been suffering from recurrent bladder infections for 4 years before being diagnosed. My question is: I have been told that there is nothing they can do for me. I know this cannot be curred but I cannot believe nothing can be done for the pain. I am allergic to sulfa. I cannot have intercourse, or urinate without excrutiating agony. I have had a biopsy of my bladder lining (negative) and they discovered my left kidney is 52% smaller than my right. And my bladder is the size of a 6 yr. old child. Can anything be done for the pain? I do not want to take anything that will disrupt my day to day life, but to have a normal sex life with my husband would be something I would like to have. My bladder does hurt, but I can live with it. The pain I cannot live with comes from my urethra. They told me there is no scar tissue there, but when they inserted the catheter in pre-op I almost passed out from the pain. That is where my pain comes from during intercourse. I am at my witts end, I am 23 years old and I feel like my sexuality is ruined. Any info or suggestions you can offer would be very helpful! Thank You. J
In Reply to: IC posted by JulieAnn on August 07, 1998 at 11:22:57:
Dear JulieAnn,
You have come to the right place. Use the archives & read everything you can find on the subject (along with the references). THEN, if you still have questions, write again.
As you get over this, I hope you will share your expereinces with the BB participants. There are a lot of you out there & most people listen to a testimonial more than they do to me.
Walt
I recently went through hidrodiliation and feel somewhat better. The spasms have gone away, however I too am drinking a lot more water and it seems to help. Prior to my surgery, I was on Macrobid for ten days and then Urased for approx. two months. During this period of time certain foods seem to make my symtoms worse, such as pizza, and chocolate. Since being diagnosed with IC I have been watching my diet and learning as much as I can to help myself without using medication. If you have any information (particulary relating to diet and certain foods to avoid) that you can pass on to me I would really appreciate it. Thank you.
In Reply to: Re: Interstitial Cystitis/ALAN BERRY posted by Nancy on August 08, 1998 at 21:25:24:
Dear Nancy,
All the dilation does is temporarily force back the tight levator ani. Your problem will be back unless you learn the relaxation I have been describing & practice it at least twice a day for 6-12 months. Even then, if you stop, the problem will likely come back in a few years. The prudent person would keep it up at least once a day to prevent recurrence forever.
Walt
Do you know of any antibiotic-IC interactions? Have there been any reports? It seems that my IC is triggered by Amoxicillin, which I am taking for a sinus infection. I would like to know if there are any other options out there, that might not act as a catalyst to my IC.
Thank you for your consideration,
Jill Marsh
In Reply to: IC/ Antibiotic interactions... posted by Jill Marsh on August 09, 1998 at 17:26:42:
Hi, Jill.
I know of no direct connection EXCEPT: ALL penicillins are excreted almost exclusively through the kidneys. In the early days, when penicillin was so expensive to make, they used to recover the penicillin, unchanged, from the patients using it so they could use it over again.
Ampicillin IS a form of penicillin. Those with IC have inflamed linings of the bladder. Inflammation ALWAYS alerts the immune system & makes it overreact to anything.
Are you seeing how this might be the explanation for your experience?
Use an antibiotic that is not excreted though the kidneys. Of course, to do so, you are going to have to have cooperation from your doc. You will soon find out whether her/his ego is more important than your welfare-----a worth while bit of data anyhow!
Walt
Dr.Stoll
I have had an inflamed bladder for 9 mths. now. I just recently have been diagnosed with IC. I am on weekly treatments of Rimso. I want to have a baby, what should I do. Do I run any risk of hurting my baby, or myself by getting pregnant? My Doctor has talked about me starting a drug treatment, it is a new drug out (I'm not sure of it's name) and you take it for about 1 year. I don't want to wait that long to have another baby. But I also don't want to further hurt my bladder. Is there a special diet I can go on, or any herbal formulas that may help? I am 23 years old, my bladder doesn't hurt all the time, mainly at night, or when I am lying down. Will my bladder begin to hurt all of the time?
Ithank your time.
Selena Wiart
In Reply to: Re: Interstitial Cystitis posted by Selena Wiart on August 09, 1998 at 20:01:06:
Dear Selena,
Be sure to read the package inserts for ANY drug you might take. I will bet you that they ALL say not to take if you are pregnant. Unfortunately, those first few weeks when you don't, yet, know you are pregnant is the worst time for damage to the fetus.
Use the archives for this site & read about how you can resolve this problem. Then the questions about medications will be moot.
While you are learning to keep your levator ani relaxed, get a copy of Paavo Airola ND's classic "Every Woman's Book" and BOTH you & the prospective father read it at least 2 years prior to conception. This will answer the rest of the questions you posed.
THEN, of you still have questions, write again.
Walt
I have read your page on IC and PFD. Being a very stressed
person for the last 10 years... I know what stress can do (handfulls of hair, anxiety, etc.) I have some questions. Many people have benefited from long term antibiotic therapy determined by a non-tradional broth culture showing bacteria, and have been "cured" of their IC. There bladders have shown healing when they have been re-scoped. Could it be possible that the pushing back of the urine into the bladder walls as you explain it, causes a bacteria, hence, the use of long term antibiotics eleviates the bacteria?
Secondly, is there any data on the success of the pelvic floor exercises (if that is what the therapy is.. not sure)or any place on the internet to read about IC'ers who have successfully used it. You sound so positive that it can cure IC... it gives me hope.
If part of the treatment is simple relaxation techniques ... I will have a hard time as I have tried everything from meditation to yoga.. to you name it.
Can you point me to where I can obtain more information on exactly what you do to relax these specific muscles...
Cathy
In Reply to: Interstitial Cystitis & PFD posted by Cathy on August 10, 1998 at 19:32:26:
Dear Cathy,
Go to the FAQ page & read about skilled relaxation and about IC. The only thing I have seen that universally resolves IC is the skilled relaxation AND the awareness of not keeping that muscle tense.
Of course, the stretched bladder wall is inflamed and any inflamed tissue is more susceptible to bacterial infection. However, any case of IC that is "cured" by antibiotics would have gone away anyhow OR will be back in a few years of stopping the antibiotics.
Antibiotics have NOTHING to do with the causes of IC.
EVERYONE can learn an effective skilled relaxation technique. Once you have read the references listed, so will you.
Walt
i was diagnosed as "possibly" having interstitial disease today. I have been going thru lots and lots of urinary tract infections so i thought for 5 years. Was prescribed antibiotics every time. At times i ran fevers, had pain, lots of it, and lots of trips to the b-room. The general practitioner then prescribed an antibiotic called cypro to take once daily. After taking this for 1 1/2 years, the pain came back, severly along with awful flu like symptons. Again i ran to the doctor, but this time to my gynecologist. He referred me to a uriologist and i had (so far) a cysto test. Had that today, the results came out normal, he then examined me and found that i had severe pain when he put pressure on my bladder. The pain comes and goes for the past 6 months. I have been on Macrodantin for 1 month and that's helped some but i still have the pain at times. He told me today to stay on the drug till we're done with yet another series of tests, but he feels it's this thing with this strange name i've never heard. He spoke about expanding my bladder, and medication. Quite frankly, i'm ready to do anything to get rid of this becuase it interferes with my life. Like being on the golf course and no b-room in site and having severe pain, traveling in the car and having to make frequent stops to relieve pain, having sex and having to experience pain during and after. I'm at my wits end right now. So, here i am a new comer to all this medical stuff and i really dont like it. I would appreciate all e-mail from anyone that wants to give advise or chat about this. I need a support group becaue it's still early in the game for me.
thanks
In Reply to: Re: Interstitial Cystitis/ALAN BERRY posted by RoxAnne on August 14, 1998 at 17:12:20:
Dear Roxanne,
The solution to your problem is on this 'site. Use the FAQ page & read all you can find in the archives.
THEN, if you still have questions, write again.
Walt
Dr. Stoll,
I'm a 19 year old male who has suffered from what I believe to be IC for the past three years. I've never had any pain or burning, but I ALWAYS have the constant urge to urinate. I've gone to countless doctors, natropaths, acupuncturists etc. and nothing has worked. I found your page last week and your explanation of IC. I have to say it's the first thing that's made any sense to me since this whole thing started. I ordered your book and I'm looking forward to finally getting over this. If you could just clear up a few things for me, that would be great. In two weeks I have to go back to the urologist and have a scope done. If they don't see any tears in the bladder lining, does that indicate that this is a completely different problem and the skilled relaxation technique therefore ineffective? There's never any pain or discomfort really during sex, but for about 45 minutes afterwards it always flares up to the point of extreme discomfort, far more than the usual feeling. Can you think of any reason for this? Does this fall along the lines of the symptoms of IC or something completely different. (I just took an anti-inflammatory for a month as the urologist wanted to rule out an inflamed prostate and it did nothing)
What do you make of people who claim to have been cured by long term antibiotics? I've taken some medications before that have done a good job of admittingly, masking the symptoms. Do you see any harm in taking them again over the short term to get some immediate relief while I begin the skilled relaxation? Please excuse the length of this, but it was amazing to finally hear something that I could do instead of a whole lot of "I don't knows" and I just wanted to clear up these points and make sure I'm on the right track. Thankyou so much for your help, NV.
In Reply to: Interstitial Cystytis posted by NV on August 18, 1998 at 12:58:28:
Hello, I had the same problem that you are experiencing. No pain or burning but constant need to urinate. It was diagnosed when I was 30, I was placed on antispasmodics for 2 mos which helped a lot but had woozy side effects, which is why I didn't take them for the prescribed 3 mos. The DMSO treatment did not work for me, thus the antispasmodics. Ten years later I was checked in the hospital by a different doctor just to be sure it had been diagnosed right as I didn't have the pain so common in others. The diagnosis proved correct, but I am so medication sensitive nothing has really helped me along those lines.
When I was 43 I noticed that it seemed to really be getting worse again and this made me extremely depressed. It wasn't great at the time but livable. I took a hard look at the situation and realized that I was constantly responding to the need, meaning I used the bathroom constantly as a way to alleviate the discomfort, even though it didn't help anything. It occurred to me that it was a waste of time worrying about the next bathroom break if it didn't help anyway and perhaps I could just get used to the "feeling" and save myself some hassle. Nothing else had helped much.
I started out by imposing a 30 min. rule. I couldn't use the bathroom more often then every 30 mins. At first if I just walked into the bathroom my body would literally sway toward the toilet. It took a lot of willpower to just walk back out but I did it. I gradually worked up to an hour and a half but it took a lot of determination. My bladder would just scream at me, much worse than the ususal problem, but I would just wring my hands, distract myself and ignore it. I went on walks needing to urinate, to bed needing to urinate, etc. For two weeks I did this and gradually worked up to 3 hours but found that just too much and have settled back down to a pretty reliable hour and a half barring unforseen stress, etc.
Although I do believe the skilled relaxation can be effective assuming you can figure out the right way to do it and stick to it long enough, I also feel that those of us who don't experience any pain possibly come to RESPOND to the problem too much and we make a bad condition much worse. You seem to need to retrain your brain.
I am not "cured", I have good days and bad days, but more good days. It is very common for me to have a half hour or more now with no sensation. I'm often doing quite well until my brain clicks in and wonders if I need "to go" and then the sensation will hit me. I can also tell now when I can ignore the sensation and it will often just go away. I work hard to relax when it is really bothering me just to see if it will abate and it does many times. Nights are the worst, trying to get to sleep, but what I have done has helped me in that area enormously also.
What I have done is not a total solution, but it put me back in much better control. I was spurred on to try this as I realized I could never take scuba diving lessons if I'd have to go to the bathroom before I could even get the wet suit on. I've suffered from this since I was 4 yers old, until I was 30 I used the bathroom up to 60 times a day and was miserable in between times.
Maybe this could help you also. Good luck.
In Reply to: Interstitial Cystytis posted by NV on August 18, 1998 at 12:58:28:
Dear NV,
IC is rare enough in males that the odds are that you do not have that yet. HOWEVER, your symptoms are typical for the spastic levator ani that causes both IC AND chronic prostatitis & prostatosis.
In the end, the resolution to this problem is the same as if you DID have IC: relaxation of the levator ani.
Vicki's note is wonderful since it addresses another aspect of symptomatic relief AND the difficulty getting someone who has suffered this all her life to actually DO what is needed to resolve it. It is NOT that skilled relaxation is not the solution to this, IT IS! The problem is getting people (who say they are willing to do anything) to actually do it.
Walt
In Reply to: Re: Interstitial Cystytis posted by Vicki on August 19, 1998 at 11:41:47:
Dear Vicki,
Thanks for this wonderful note. It not only brings up what you have learned that is helpful to suppress symptoms but it also helps others see how tough it is to get people to do what actually cures it: skilled relaxation.
Thanks again, Walt
In Reply to: Re: Interstitial Cystytis posted by Walt Stoll on August 19, 1998 at 12:23:26:
I guess it is not clear to me how one goes about skilled relaxation and more importantly how you figure out if you are doing it correctly. It's obvious re-reading my message that I have a lot of willpower or could not have gone through what I did to help myself. That was a few years ago and knew nothing about relaxation techniques at the time. So it should follow I could channel that into something even more productive. This disrupts my sleep so much the thought of needing less sleep is intriguing.
I have seen references to the fact people can practice this for months and not do it correctly, and therefore I assume not get the desired results. I've heard about biofeedback equipment you can wear that lets you know when you have hit a certain wavelength.
So I guess fo rme I'd need specifics on how to go about this and make sure I'm doing it correctly. Is this all something I can discover in your book or should I look elsewhere? There is a certain challenge in your last response I can feel myself "bracing" to. Thanks. Vicki
In Reply to: Re: Interstitial Cystytis posted by Vicki on August 19, 1998 at 13:12:19:
Dear Vicki,
Thanks for recognizing my attempt at "challenging" you. It was meant to produce exactly the "bracing" you are experiencing. Getting under one's skin is the surest way to stimulate action. The trick is to do just enough to stimulate action without turning them off.
The main reason that I took the chance is the very history you mention as proof that you have the "guts" the solution to thie problem will need.
I think you should go to the FAQ page & read the skilled relaxation article THEN, get a late '70s or early '80s edition of the recommended workbook from your library network.
IF money is no object, you might want to get a good GSR biofeedback machine. That is not the way I would go but you will end up spending an average of $100-300 in biofeedback checking and a good machine would cost about $350. You could sell it used, when you don't need it any more (about a month or so), for about $150-200. I would be happy for you to tell about its availability right here on this BB.
I do not want to sell anything on this BB. However, your making it available to others who want to make the same choice is NOT selling.
Walt
Once you get that far, you will have more questions.
Namaste` Walt
In Reply to: Re: Interstitial Cystytis posted by Walt Stoll on August 19, 1998 at 12:20:34:
Walt,
Thanks for the response. If it's possible for me to have these symptoms without actually having IC, does that mean that if the urologist tells me that the inside of my bladder looks fine that the relaxation would still help or even cure this problem? If so, I'm a little confused because I thought that tiny holes in the bladder caused the symptoms of constant urgency which is caused by the urethra becoming smaller, which in turn is caused by the chronic pelvic tension. Is it possible that I could have all these syptoms for so long and at the same time have a normal bladder lining? If so, will the skilled relaxation still help? Thankyou for the clarification. NV
In Reply to: Interstitial Cystytis posted by NV on August 18, 1998 at 12:58:28:
Dear Walt,
I wonder if osteopathy can also help with this IC? I have a bladder infection and often have cramps and discomfort in my pelvic region. I have had cramping there for years. I am doing the twice daily meditation. During the meditation, I sometimes felt an increase pain in the abdomen. I wondered if it was that the pain was there all the time, I just was relaxed and became more aware of it.
Anyway, when I went to the osteopath he found that my pelvis was out of alignment. He said that my pelvic bones were shifted in one direction and that my internal organs were shifted in the opposite direction. Ever since he adjusted it, my whole abdominal area is not cramping as much and feeling better. It feels more relaxed too.
I know I will need more adjustment but it really helped. What do think about this and Interstitial Cystytis and prostrate trouble? Do you think Rolfing and Osteopathy could be helpful to get it to relax along with meditation?
I just feel MUCH better overall after seeing him. THANKS for recommending I see a qualified osteopath!
Do you think this might help NV and others with Interstitial Cystytis and prostrate troubles along with all 3 basics...(Whole foods, meditation, exercise)?
Feeling MUCH better,
pamela
In Reply to: Re: Interstitial Cystytis posted by Vicki on August 19, 1998 at 11:41:47:
Just wondering, given your description, if this might not be a type of obsessive/compulsive disorder? The anxiety you describe, when you don't let yourself "go", and the fact that it began in childhood or adolescence, points toward the O/CD possibility.
In Reply to: Re: Interstitial Cystytis posted by Vicki on August 19, 1998 at 11:41:47:
Did you ever try skilled relaxation? Do you also have flare ups after sex and if so, do you find anything helps? NV
In Reply to: Re: Interstitial Cystytis posted by NV on August 19, 1998 at 17:44:32:
Der NV,
At the risk of seeming frivolous, the answers to your questions are yes. yes, yes & yes.
Your bladder will eventually show these changes. I hope you do not wait for that before getting rid of the levator ani tension.
Walt
In Reply to: Re: Interstitial Cystytis- osteopathy again? posted by Pamela J. on August 19, 1998 at 18:18:05:
Dear Pam,
Everyone who is "bracing" would be llikely helped by any structural approach. All you have mentioned are such approaches. I have tried to focus on those things the person could do for themselves just to save money.
Some people MUST have help to get this rolling and that is where I recommend these things that can be done to you rather than your doing it yourself.
I am sure that I am sometimes too conservative about those recommendations and I am grateful to you for taking the time to mention them. If I took the time to mention everything that COULD be done, I would be spending a hundred hours a day on this BB. Your help is VERY gratefully accepted!
Namaste` Walt
No, I don't see it as obsessive/compulsive. What I meant by hand wringing was that during the time I was trying to retrain myself to not respond so often to the need to urinate the sensation was so intense it was just miserable. There seemed to be a war going on between me and my brain and I intended to win. It got downright painful and the "hand wringing" was a metaphor in this case. I've been hospitalized and checked out with IC. What I was trying to say earlier was that based on my own experience it seems quite likely that we begin to over respond over time and your body becomes accustomed to the pattern. When I reached a point that I could comfortably hold out for a couple of hours during the day that is exactly how often I would wake up at night, every two hours. I still have that problem. There has to be a brain/body connection going on here to some extent. I was just thinking today how wonderful it has been to have the amount of time I do now off and on without that miserable sensation. My next step is to try the skilled relaxation.
In Reply to: Re: Interstitial Cystytis posted by Walt Stoll on August 19, 1998 at 13:43:05:
I'll ;look into the skilled relaxation. Will start with the workbook and go from there. Thanks for your help and encouragement.
How is skilled relaxation different from what is done by a doctor using trigger point release for PFD, and does it give the same type of results. Is one more effective? Skilled relaxation teaches you how to do it which is great, but how can one possibly get the same results (it seems difficult to pinpoint one specific part of the body ...levator ani and relax it).
I also would love to hear from those who have used your technique and have been cured.
In Reply to: IC - effective results? posted by kate on August 19, 1998 at 14:11:53:
I feel like I am missing something. Don't mean to ask so many questions, it's just that I do body/mind relaxation techniques and have for years... and I still have IC. I also read that you have to verify that your doing the relaxation properly to ensure your relaxing the levator ani. How is this done? When I read posts it seems vague as to how to pinpoint the pelvic area. I guess I'm looking for more specifics on treating a certain part of the body. I read that your supposed to do skilled relaxation ... is that it...how do I think about relaxing a certain area without even knowing where it is?
In Reply to: Re: IC - effective results? posted by kate on August 19, 1998 at 14:56:05:
Dear Kate,
If you checked out your skilled relaxation technique with biofeedback, way back then, to certify that you were indeed reaching the alpha/theta rhythm in the brain (the "relaxation response") AND you have been practicing it at least twice a day for 20 minutes (not counting any done within 2 hours of going to bed at night), for more than 6 months---and still have IC, I would like to know. You will be the first person I have even heard of that this did not resolve.
One of the first things a successful skilled relaxer begins to sense is the various muscles that are more tense than the rest of the body. This was even discussed under another response today by the person reporting this effect. If you have to ask, this has NOT happened for you. I will bet my reputation that your relaxation technique (meditation as per your note) does NOT produce the relaxation response OR that you have not been practicing it at least twice a day.
Any competent biofeedback instructor knows about the rectal, vaginal or urethral probes that can be hooked up to biofeedback instruments & feedback to the person when these parts of the levator ani are tense. It is no trick at all to learn to keep that particular part of the muscle relaxed. Research laboratories have demonstrated over & over that anyone can learn to control one single muscle cell with a few hours of training.
HOWEVER, although that can resolve something localized like this. that is NOT what I recommend. This is just another "tip of the iceberg" of the total body response to the fight or flight storage in the hypothalamus. If all one does is get rid of the IC, something else will inevitably break down since the total body cause has not been addressed:
your IC will be gone but your endocrine system will break, etc.
Walt
Dr. Stoll,
I forgot to mention it in my follow up, but do the syptoms I'm having around sex (no pain or discomfort during, but a big flare up of urgency for about an hour afterwards) fall into lines with the symptoms of IC? Has anyone else had similar experiences? Any suggestions? Thanks, NV.
In Reply to: IC and sex posted by NV on August 20, 1998 at 00:06:17:
I have always personnally felt that the big flare-up after intercourse is due to the fact the bladder is constantly "nudged" throughout the process. It seems like anytime you do something that irritates (annoys) the bladder you can expect some kind of reaction if you have this problem. I cannot have a catheter inserted and left in place without taking antispasmodics for example. It causes me to experience an extremely intense and constant sensation of needing to use the bathroom. If there is some more precise medical explanation for this problem I'd be interested to hear it.
In Reply to: IC and sex posted by NV on August 20, 1998 at 00:06:17:
Dear NV,
This experience is so typical of levator ani tension that I neglected to mention it in my note. The levator ani relaxes during intercourse. What you are experiencing FOLLOWING intercourse is the re-tensioning of the muscle.
The only reason you don't feel it so much ALL the time is because of "accomodation".
Once one understands the relationship between levator ani tension , IC, prostatosis, hemorrhoids, vaginismus, etc. One wonders why such an obvious connection was not seen before. UNTIL one understands these relationships they tend to seem to block it from their minds.
Paradigms are REALLY difficult to change!
Walt