mild ic confirmed today :(

[Pensive Girl]

hi everyone.

i had an in-office cystoscopy today. it showed mild ic. looked sort of like a blood shot eye, but didn't have any ulcers. only a few of the blood vessels had actually burst.

my doctor said that mine is 90% caused by PFD...and that if i can learn to relax my pelvic floor muscles, i can actually heal my bladder and get over it. he said he makes IC go away in 90% of his patients. he said the bladder CAN heal itself if i let it. meaning, i need to keep taking elavil, a muscle relaxer and add in elmiron while undergoing physical therapy to learn how to relax my muscles.

he is aparently one of the best IC docs in the nation. so, i'm confused because everything i've read on here said that the bladder wall can't heal itself.

i don't have any ulcers or scarring...so maybe that's where i'm different?

he also said that 25 percent of IC patients don't claim diet as a trigger. and that if you've eaten something your bladder didn't like, you will know within 2 to 4 hours. he said very rarely does a flair wait up to 24 hours to happen.

is this sounding right to you guys?

i'm so overwhelmed.

:rant:

[Sally939]

Hmmmm, well I am sorry you have IC but, atleast it is mild and you are on the road of feeling better. As for the bladder healing its self, it is my understanding if it is truely IC it will not go away. With the help of all the tools the bladder can get better than it is now. Mine is a great deal less painful now than it was when I was first DXed. I hope you will be feeling better very soon. Give it some time and try to stay positive.

[leelee88]

I am with Curl on this one..
If it is IC then it is not cureable. BUT it can be very treatable. I don't know who your Dr is but I would be weary and if you have doubt just do your research on IC ..
I truly wish this was true but don't you think all of us here would not be suffering so much if there was a cure? Just a thought~

[mlzippy7]

I am sorry that you have IC. I haven't heard that IC can be healed but that would be great. My IC doctor said I will always have it and that we have to try and manage the symptoms the best we can to maintain the best quality of life possible.

[yvette]

I think his words regarding "heal"....that doesn't say cure.....but it is a way of saying what a lot of us here say about the diet and lifestyle changes....it won't cure but it can help heal up and help with rritation and inflammation that may be current.

Jill had an analogy with IC...."If you had a broken leg you wouldn't run a marathon right?" You'd rest recupe and slowly after lots of personal care and therapy, you'd ease back into walking, then eventually running. So with IC its kinda the same idea...you'd be really good to yourself and your bladder and let those glomerations (tiny little bloody tears in the walls) heal and recupe.

When I first started this whole thing...I had to be really good and follow a regiment that helped calm down my bladder (even more so with my IBS) I can now eat some forbidden foods---but not in the beginning. Dumping coffee, diet coke, oranges and tomatoes wasn't going to get me where I need to be....but eventually i can eat some of that stuff. And now when i get a flare....it doesn't last as long and its not as severe like it used to be.

Does that help make it sound a little more realistic?? :)

[systitis]

I am unclear about the connection between IC and muscle tension. How does muscular tension affect bladder tissue? Can someone explain?

[shanaladee]

I am sorry for your diagnosis but as the others said here, it isn't the end of the road. It seems from what I read here, that changing a few things in your life makes it manageable.

My doctor also said that IC was not curable and that all we could do was treat the symptoms. I am anxious to see if your dr. does cure this and I am hopeful for you. :)

[ICNDonna]

One of the things that can happen with pain is that we tense our muscles in the area where there is pain. That tenseness can increase the pain. If we can manage to relax those muscles, the pain level is reduced.

I know that I am food sensitive and that some foods can take a full day to cause a flare. I think the IC diet is worth a try for you. You may be in the 75% of ICers your doctor referenced.

Warm healing thoughts,
Donna

[GriffsMommy]

Yea, okay, it does worry me that he is supposed to be an IC specialist yet he said he "makes IC go away in 90% of his patients." Perhaps what he meant was that he gets 90% of his patients into remission? If you have IC then you always have IC, you can't make it go away. However if you find the right set of treatments for you then you can go into remission where you have little or no symptoms. This does not mean that it is gone though. We do see many people come back to the boards when their remission ends after many years and have no idea where to start again.
Hopefully because your IC is mild and if your symptoms are mild as well he will be able to find the right combo of things to get you into remission. As for PFD, most of us with IC have it to some degree. It means your pelvic muscles are too tight and learning how to relax them will help with some of the pelvic and bladder pain you are having.
As for the diet, I don't know if 25% of patients say they aren't effected by diet. I know that most here have at least some food triggers. Some more than others. If you look at the diet in the patient handbook it shows you foods that are usually okay, might be okay and usually are a problem. Some people literally can only eat from the usually okay list or they get a flare up. Some like me only have a few things that I know cause triggers and I can eat a lot of foods that many ICer's can't. It is usually recommended that you at least try the diet. For some it is a big part of them feeling better. Until you change your diet to more bland things you won't know for sure if food is a factor for you or not.
Good luck to you and :welcome: to the ICN!

[Pensive Girl]

thanks for all of your responses :)

i have been on the IC diet for a month. but i still drink coffee and alcohol and occassionally eat something i shouldn't. and i have not had a flair for a month. so that tells me coffee and some alcohol are okay for my bladder.

my doctor said there are 3 or 4 ( i can't remember the exact number ) forms of IC. he said my bladder irritation is caused by constant muscle tension. i also have scars from a double hernia surgery i had at 6 weeks old. my physical therapist feels scar tissue maybe part of the problem.

see, i've probably always had pelvic floor dysfunction. and constant tight muscles down there effects your urine stream. and a hesitant urine stream, effects your bladder. it starts going into spasm. these spasms can cause it to become irritated over time. my bladder had tiny little blodd vessles in it and only a few broken ones. no ulcers. no scar tissue. if i can learn to relax my pelvic floor muscles, most of my problem will go away he said. because for me, the huge piece of the puzzle is that. not so much my bladder.

are any of you the same as me as far as PFD being the main issue?

[BBB]

I am glad to hear you are willing to work with your PFD as it is a long journey. It like IC, can go into remission, however you will always have PFD. I beleive all IC patients do to some degree. I also think that IC can be less painful in some cases then PFD. It is so hard to tell what is causing the pain, bad urine flow, etc.

However, to answer your question, My PFD is worse then my IC. My Doctor diagnosed me with extreme PFD and moderate IC, although the IC is getting worse. Many methods are now available to relax the pelvice floor, including surgery which I had. I also was part of the "BION" stimulator study. PT was a live changing event. I retrained my bladder, learned how to have less painful sex, hold my pelvic girdle in the correct position and how to relax my rectum in order to have a bowl movement.

I use the godsend "IF3Wave" which is an external electronic stimulation for the pelvic floor that pulls the muscles like pizza dough and then encourages them to work together again. The setting on the unit is market IC. See what I mean? The IF3 Wave is a wonderful non-invasive alternative to the Interstim. I tried that too and it wasn't for me!

The other godsend is "Intervaginal Valium". My Doctor invented this method and it makes sex possible. There are several threads on this Board about this treatment, so I won't go into it here.

The one thing I have been experimenting and beleive it is absolutely true is that food can still trigger your PFD. I approached my Doctor about this and he was like "Yeah, of course...You didn't know that?" Say you drink some coffee. I use coffee as an example because that was the last item on the list of "bad" foods I gave up!!! And boy was I convinced that it didn't bother my bladder!! No way, no how!! My bladder hurt in the morning because I had held my urine for three or four hours, not from the coffee. Yeah, right!

My belief, after interviewing Doctors and doing Research, is that certain foods determine if the IC or PFD will flare. I had my Doctor, who is a well know IC/PFD expert test this. You can try it at home but I wouldn't suggest it. Maybe just imagine the last time you ate one of the foods on the following list and where you felt your pain?

Take coffee and chocolate. If a patient is hooked to a machine that records muscle spasms or IC flares, it would show significant muscle spasms. However, it a patient had citrus, like an orange or citric acid, the bladder would spasm from the acidity on the rough, open soar in the bladder. I feel the pain from different foods in two distinct areas. PFD is towards my bottom and hips and IC is a pressure, burning feeling.

The connection between IC and PFD is my new passion since my Doctor and I discussed it and I started researching it. IC or the Bladder effects the muscles because the Bladder organ is muscular in nature, as well as, the uretha. Once one gets going they all tend to join in to some degreee. I hope to write a paper (in my spare time) with what my conclusions are. In the meantime, if you do happen to slip up and eat something on the "Never" list, see where you feel your pain most. And yes....sometimes it is hold on to your hat! I can't take this anymore!!!
B

[jenjen05]

My doctor said that when IC is mild and its cause comes from being "drug induced" (ex- too many antibiotics in short time) he has seen, with drug therapy and the IC diet followed strictly, people heal permanently and show no IC signs or symptoms after a year or two.

Just sharing.

[sailawaygrl]

I believe that IC can go into remission or with treatment and your work on proper food and stress control become much less noticeable in our day to day lives. I also have been told that PFD can go away- maybe BBB has a more severe form but the way PFD was explained to me is: when our body is in pain the muscles around the pain tense up as a way of protection which is good in the beginning but since our pains stays for so long they stay that way too long and that is not good. They then shrink and remain tense. We have to -with physical therapy-work hard on lengthening and getting those muscles back to their natural state. This will probably take continued work probably at some level forever and I guess that is where the not curable part came in with BBB ( now I understand ,sorry)

Just my two cents, on how I understand thing from DR and PT. I know we all hear it differently and understand what we hear differently too.

Hope this helps some. Good luck to you! Bottom line is you can and will get better, but it will take a lot of work on your part.
Sandra

[targirl81]

Hi Pensive Girl: I am so sorry that you are dealing with this. I am glad that your case seems to be on the milder side. I have PFD and IC as well. It took many years and doctors but I got a jewel of a doctor off this website and he has been an angel :angel: for me. I am on a regimen of a low dose valium and hydroxizine. I have pain meds on hand for flares. I have been able to live a pretty normal life since working with this urologist since the fall of 2005. I am in NC....I don't know where you live but if it's close to me, I'd be happy to refer you!

[laurina]

Hello to a new IC patient. I am new as well....and have been suffering for the last 4 months. I was wondering what State your doctor is in because I would go to the end of the earth to get rid of the feeling of pressure and shards of glass in my bladder.
I have been reading this site since being diagnosed and I respect Everyone that has replied to you.....if there is a cure or a way to go into remission I would fly anywhere to get that help.

Thanks for reaching out...Laurina

[SharonA]

This thread is an older one. It looks like Pensive Girl found what works for her since her last activity on the boards was on 5-19-08. BBB has not been on the boards since 9-04-08. I hope they are both doing well and living life to the fullest.

laurina...:welcome: to the ICN :):):) I hope targirl81 sees your post and gives you the information about her doctor. You could always try sending her a PM (Private Message) asking her for that information just in case she does not look here. If you are not sure how to do that, just click on her screen name and then click on "Send a private message to..."

[laurina]

Oh ok, haven't quite figured out the system yet....Thanks so much for getting back to me yourself.

I'm on the Central Coast of California and looking for a Specialist here. This site has helped me cope.....but if there is someone out there claiming to be able to take away the pain and help cure us....I want to know them. I'll try contacting her.

Also my 9 year old seems to have some of the same symptoms I do, and we thought she has been getting bladder infections, but the test came back only positive for blood....so it looks like I may have to take her to a specialist too....she described it like she had eaten something plastic and when she peed it took her breath away...praying not

[SharonA]

You might be able to find a doctor by clicking on this link:
http://www.ic-network.com/md/

Just remember...As of right now, there really is not a cure for IC. There are many meds/treatments (look in the Patient Handbook - link to it is in my signature below) that can help with the symptoms, though.

[laurina]

Thank you again.....I will do this right away

[targirl81]

Laurina: I have had IC since 1998 but did not find my angel doctor until 2005. I am in North Carolina. I know you are in CA but perhaps his office could help with a referral out there. His name is Dr. Robert Evans and he is located in the Greensboro area. Feel free to PM if you want more info or to talk at:
targirl81@aol.com. :hi:

[laurina]

Thank you so much I will email you from my private email, I don't know how to private message yet. My usband just called to say he was done seeing patients and on his way home for dinner.....I feel bad for him because I told him I was about two minutes away from being on the floor. I am getting close to early full blown menepause and haven't had a cycle for two months....however today my period came and I can barely take another day anyway....so IC on top of that you can imagine....I need to take meds in a while and will email you after they start to take the edge off.....which is all they do. Thank you thank you thank you.....

[musiclover]

Keep me updated, I'm interested in learning what else your doctor says. I also have PFD, but am getting physical therapy and seeing results in terms of pain. My pain is almost gone. But I have a lot of frequency/urgency, that's all. I'm not very sensitive to most foods, except vinegar, lime/lemon and some red wines. But besides that, foods don't make me any worse. But I'm pretty bad already with the urgency. Well, that is really a bummer for me to hear today. I thought that the bladder could at least partially heal itself if you let it. I've talked to a couple of people on here that pretty much got over the IC after a couple of years, but only once in a while get some frequency. I'm hoping that is true, and that it can happen. I've got to keep the faith, because this is really getting to me. I've been scared to start on my Nortriptyline (like Elavil). Maybe I should start taking it. Did your doctor say why? Will it actually help heal the bladder? Maybe it stops the circle of inflammation so that it can begin to heal. Is it really impossible for the bladder wall to get better? That doesn't make sense to me. Sigh...

[musiclover]

One more thing. I read that sometimes Elavil can have a detrimental effect on PFD, so you have to be careful for that. Have you heard that?