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julesthefish

Registered: April 20, 2007
Posts: 2
Reply with quote  #1 
Hi There fellow sufferers!!
I am due to go into hospital on Thursday for a cystoscopy and cysto distention, for symptoms of IC. I was looking on the internet for any information on what to expect when I came across this formum. So I would please welcome any advice on what to expect as in recovery times, how sore you are afterwards, If symtoms worse initialy etc and if any body has found this treatment to be of benefit.
jaywoo

Registered: Jan 12, 2007
Posts: 86
Reply with quote  #2 
Hi

I take it you will be having a general?  The actual procedure takes about 15 mins so is very quick.  You will be rather sore afterwards and when going for a pee it could be painful, a trick that was mentioned to me was to pour cold water on myself as I was weeing, as that takes the sting away.

Drink plenty of water and within a few days you should feel better.  I found that the procedure helped a lot and my frequency became less afterwards.

Hope it goes well for you.
julesthefish

Registered: April 20, 2007
Posts: 2
Reply with quote  #3 

thanks for the info, I will get the cold water ready!!

sweetangel2080

Registered: July 30, 2005
Posts: 1,187
Reply with quote  #4 
hiya
if you search for hydrodistention or cystoscopy or go onto http://www.ic-network.com/handbook you should find some more information

Due to the nature of the test - ie putting a camera in through urethra, many people will feel irritation and urgency for at least a few hours to day. Everybody is different with recovery times

If heat helps you/ cold keep these on hand as it can really help the pain and urgency due to urethral irritation. (my heat pad helped me soo much)
I have had 2 and it hurts to pee afterwards- like peeing razor blades but this time round I found drinking lots of water and mixing bicarb of soda in water helped that a lot plus had painkillers
Some people find a squirty bottle of water helps the stinging when peeing.
The hospitals recommend a wet flannel in that area

I had it done in the morning and had discomfort but the next night the burning had gone and was just a little pain and frequency. I was one of those ones that were helped by the cystoscopy and a lovely pain free 2 weeks (but most say it helps from 3 months to some even a year although this is rare)
It didn't help me at all the first time I had it and was in agony with pain and frequency for 2/3 weeks (but had Bacterial cystitis too) so my IC had got worse since then and was dreading the next cystoscopy but it was fine!

Everybody responds differently - I hope it goes well for you, but do be prepared for an increase in symptoms and then if it is all fine, will be great!
MandyG

Registered: Nov 10, 2005
Posts: 361
Reply with quote  #5 
Hi, I had this procedure done nearly 4 weeks ago - I wasn't as bad as I'd expected - a little discomfort and my wee was pink for about 12 hours (bleeding).

As for the procedure working, well, I don't think so.  My consultant said if there was to be any improvement it would be known within 2 weeks.  I am now nearly 4 weeks later and I can say I haven't seen any dramatic improvement.  I suppose I'm having more better days with frequency, ie I can now sometimes go 3-4 hours instead of 1-2 hours, but that's only some days.  That little niggly feeling of always wanting a wee is still there though, but I can sort of hold on better.  It's certainly better when I'm just sitting around relaxing, not when I'm at work and on the school run!

I go back to see my consultant in a couple of weeks to find out the result of the biopsy and what he found in my bladder (he did say it bled a little, but didn't elaborate on the facts - is that normal when a bladder is stretched?!) and I was still groggy from the anaesthetic to take in what he was saying really.

He has said in the past that if this procedure didn't work then the next thing would be instills - so still don't know if I've just got OAB or mild IC (though he has said I could have some sort of inflammation).  Nobody seems to know anything and the whole process is taking FOREVER!

Just one question to ask people a out there - why the need for more than one stretch?  If the procedure never worked first time then why go through it all again?  I've read several times of people having a few cystos and stretches.  One's enough for me!!

Mandy x
sweetangel2080

Registered: July 30, 2005
Posts: 1,187
Reply with quote  #6 
oh and to add yes first time round did have some bleeding for a few hours and pinkish urine too.
also the stretch can help capacity - it helped me first time round in this way.
is meant to help ic pain etc due to nerrves being disturbed during stretching.


mandy,

the pinpoint bleeding/glomerations (sp?) is normally seen as a diagnostic criteria for IC and things like excluding other conditions is also taken into account as diagnosis is never easy and some ICers have pain but no frequency, others small shrunken bladders and pinpoint bleeding,others seemingly healthy bladders but frequency etc etc.
Your doctor may just be hesitant to mention IC unless he is really sure but if they say you have OAB, do question how they came to that diagnosis. 

as well as the above link the forums in the US for IC are quite big so good for information -  http://www.ic-network.com/forum where there are lots of threads and one just for newly diagnosed and those being diagnosed


maggie32

Registered: April 16, 2007
Posts: 5
Reply with quote  #7 

Quote:
Originally Posted by sweetangel2080

mandy,

the pinpoint bleeding/glomerations (sp?) is normally seen as a diagnostic criteria for IC and things like excluding other conditions is also taken into account as diagnosis is never easy and some ICers have pain but no frequency, others small shrunken bladders and pinpoint bleeding,others seemingly healthy bladders but frequency etc etc.

Don't wish to confuse anyone however I was told that even normal bladders when stretched bleed a little. I realise some consultants are not that clued up on ic, if you look a t my profile then you will see I had an ic specialist regarded as the best in this country. To be honest though I have read a lot of people on this particular sight haven't been happy with this consultant, so realise I'm not alone there then.

Hope i haven't offended you sweetangle best wishes maggie
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