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LizB

Registered: Jan 7, 2006
Posts: 318
Reply with quote  #1 

Hi All again.

 

Biopsy result show chronic mild inflammation with no specific features of IC, any ideas? Does this explain why my bladder is much happier with a catheter and is the most comfortable I have been in ages, don't relish the thought of it coming out on Monday.

 

It is not an infected inflammation so it makes me wonder what on earth is going on, presumably there is no cause or cure? I am soooooo impatient to know the answers to all my questions. I will be really interested to see what happens when this catheter comes out, and whether I retain or not. I guess it could be because I do retain that this inflames the bladder wall, any suggestions from anyone, please?

 

The letter doesn't mention cystistat although that was mentioned whenI had the cystoscpy, does anyone know whether this is used for symptoms that are not IC? I guess this would be a painful bladder syndrome?

 

I think I would like a definitive diagnosis to ensure that I am not totally mad and paranoid. The way my bladder feels sometimes I am sure it is more than "mild" this makes it sound like I am making a fuss about nothing!!!! Paranoia soons takes over when you think the whole world thinks you are mad!!!

 

Anyway, enough twittering, thanks again, I do not know what I would do if I couldn't rant and question everyone on here.

Thanks again

LizB xx

janey

Registered: April 2, 2006
Posts: 68
Reply with quote  #2 
Hi, if your bladder is in inflamed then you could have IC. If there are no known reasons for the inflammation then IC is usually the diagnosis they give you. Thats the meaning of interstitial. Cystostat would prob help you as it is replacing the Gag layer that has become defective . If that layer has broken down then the urine becomes toxic to the inner epithelial layer of the bladder and thats what causes the pain. The fact they say its chronic suggests it been happening for some time. I would definitely give Cystostat a try. The sooner you can have it the better. Jane x


Reply with quote  #3 
Painful Bladder syndrome and IC are the same thing.  Some people have pain, others don't.  if you have inflammation  without any infection, that's usually IC.  Cystistat can be used for BC and IC.  If you are offered it, take the chance. Inflammation is a classic sign- unless it is a left-over from bad attacks of BC.  You may have gone into retention because they over stretched your bladder-the muscle just doesn't like it.  a few people on this site had that and it gradually went away.  Hope you will be ok!

The reason you might feel better now is because of the stretch and nothing to do with the catheter- some people feel better after the stretch as it deadens the nerves - that may be what has happened to you, but you also have the side effect of not being able to pass water until the nerves re-establish themselves and the muscle recovers from the trauma- hope it's not too long!
LizB

Registered: Jan 7, 2006
Posts: 318
Reply with quote  #4 

Thanks

I am still feeling more comfortable with this catheter, it does not even hurt to make love, first time that it hasn't hurt for years!!!!! Empty bladder seems to mean no pain!! Even more scared to have this catheter out!!

 

It is interesting about the actual diagnosis of IC is there a definitive diagnosis or is it one of exclusion. I cannot see what could cause chronic inflammation of the bladder wall, but if it was IC would it show that the GAG layer was defective on the biopsy? I am confused. I agree that I am going to try to persuade them to let me have the cystistat treatment as soon as, because surely the inflammation could get worse?

 

Glynis, you mentioned that it might be that the muscle and nerves need to start working again, any idea of how long this might take, the urology nurse did say she thought we might be too early in taking it out, aprehension again about tomorrow!!

 

Anyway, I will let you know how things go.

 

Regards

Liz xx 



Reply with quote  #5 
Hi Liz

The person I know who had this problem had it for about 2 weeks- then it went away.  She didn't need a catheter but had problems peeing- she really had to strain.

I think the reason you are pain free is not because of the catheter, but because you have lost sensation due to the over stretching during the op.  The nerves are damaged and therefore sensation is lost.  I amsure you will recover, but everyone is different.  I couldn't pee for a week after 2 gynae repairs.

There is no definitive diagnosis of IC- they are still debating- some drs believe there have to be mast cells, others don't.  Putting it simply, if there is long term inflammation w ithout bacteria, then that is IC, to my knowledge.  No one knows the cause and why some people have a deficient GAG layer.  My Ic began after one attack of BC - over 20 years back- and my bladder has been sensitive ever since.
Renee

Registered: March 2, 2004
Posts: 30
Reply with quote  #6 

I had a badly inflamed bladder and was told it was chronic cystitis. I aked the difference between inflamation and IC. I was told IC the bladder usually had like small ulcers. I have been on Elmiron for 6months now and am a whole lot better now.

 

smcneil

Registered: Jan 20, 2007
Posts: 7
Reply with quote  #7 

Hello Liz...did you ever find out what your actual "diagnosis" was?  Was it IC?  I had the same biopsy results as you, and I just wanted to know what they said you had...thank you.  You can also email me directly.  Thanks again. 

ange

Registered: Dec 12, 2003
Posts: 335
Reply with quote  #8 

I've never had a biopsy taken, because my consultant says that the results come back as yours have, not definitive of IC.  The international urology community are now using the term Painful Bladder Syndrome (or Bladder Pain Syndrome), saving 'IC' for those with certain cystological and histological findings.  Unfortunately, they don't seem to have decided what these are (except in the case of Hunners ulcers, which are definitely IC), so my consultant doesn't do biopsies unless there is something iffy, and just gets on with the treatment.   

 

Love Angie

Elena

Registered: Aug 3, 2006
Posts: 187
Reply with quote  #9 

Angie

 

You are so lucky having a consultant that doesn't faff around.  Have had two major doses of nitroflouritin and low dose and am in severe pain - have been trying to tell my uro for over a year I think it is IC but on my biopsy two years ago I had a healthy bladder.  Am trying to survive until I get to see him and ask for cystostat or a stretch again as I am in terrible pain.  Sorry for the 'I feel sorry for myself' statement.  Reg E

LizB

Registered: Jan 7, 2006
Posts: 318
Reply with quote  #10 

Hi

 

I still have no definitive diagnosis. My Drs seem not to want to call it IC and I have had several debates about this. It looks like they are probably going to call it "Painful Bladder Syndrome" as per the new European guidelines. It is very frustrating as I somehow feel that with a diagnosis you get a little more understanding!!!! I also have a problem with retention that is possibly fowlers syndrome but I am not too sure-I was wondering if this is why I have problems with inflammation!!! I don't know.....who does?

 

I am having cystistat instillitions and I have just transferred to fentanyl patches for pain control and things seem to be improving. I take the fentanyl for a chronic back and leg problem, falling apart and I am not 40 yet!!!! As I have said in another whittering that I am possibly going to try SCS for my back pain and as I am convinced that the bladder and leg/back stuff is linked, it will be interesting to see if this also has an impact upon any bladder stuff, unfortunately I will have to wait a while to try this.

 

I am more than happy to chat off line if this is OK, you can email me through the COB foundation-no problems.

 

Hope you having a good day!!!!

LizB xx

Elena

Registered: Aug 3, 2006
Posts: 187
Reply with quote  #11 

Funny you should mention back ache and leg pain.  I get tingling pain down the inside of my legs to the inside soles of my feet - my holistic friend told me that that was the meridian line down your leg and the pain in my foot is the exact reflexology point for the bladder.  I had a spinal fusion years ago and have some degenerative discs in my lumber 5/S1 and I too think that some of my problems could be related to my nerves that get trapped.  I remember someone on this forum mentioned diclofenic sodium which she took for pain and as a side affect her bladder pains subsided.  It is very strong on the tummy and you need to take gaviscon with it.  I hope you get on well with the cystostat - I am going to press my uro. for it too as I'm fed up with not being properly diagnosed.  Reg E

ange

Registered: Dec 12, 2003
Posts: 335
Reply with quote  #12 

Hi Liz

Couldn't email you - it is a private email address!  Mine isn't though, if you want to contact me.

Love Angie

eddy

Registered: Jan 16, 2007
Posts: 9
Reply with quote  #13 

Hi there, This is a very interesting thread for me as I have been having symptoms of IC for about 5 years which were initially put down to prostatitis.In the summer I had a 2nd cystoscopy and in September a bladder biopsy after which I was told I very probably had IC but at my follow up last week the senior uro said that the samples were normal and showed no evidence of IC. He agreed that I did have a chronic inflammatory condition but would not diagnose IC on appearance alone, result another urine test and a 6 month follow up. He is also of the men don't get IC school which doesnt really help. Best Regards Eddy 

LizB

Registered: Jan 7, 2006
Posts: 318
Reply with quote  #14 

Hi All

 

The question of diagnosis seems to be a real confusion. I have a diagnosis of Mild chronic inflamation from biopsy (goodness knows what severe must be like!!!!!) and the consultant used the term Painful Bladder Syndrome. If you read IC books they will say that any inflammation in the bladder all is IC as that is what interstitial means- within the tissues- I m sure someone else has had this discussion with ,me about this recently. Anyway, I have had some success as my consultant has given me a trial of cystistat and fingers crossed things are a little better- not perfect but I have almost accepted that perfect is unlikely.

 

There are loads of sites regarding IC diagnosis but the European Society for the Study of IC/PBS is quite good-google it and it will come up. I have read so much and people have directed me towards loads of information that I can't remember how I got hold of this study info. It could well have been from here.....I tend to be abit wary of reading some stuff as I am never sure which ones to believe and that is why this site is so useful and supportive.

 

good luck and hope things improve.

Regards

LizB xx

smcneil

Registered: Jan 20, 2007
Posts: 7
Reply with quote  #15 
Thank you LizB, I am getting two more opinions within the next few weeks with my biopsy results (which were the same as yours, mild chronic inflammation) and will let you know what these "doctors" say.  I want to know what their diagnosis will be. By the way, I am in the USA.   Thank you.
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