cystoscopy/hydro/biopsy?

[Ducky31]

hey guys after reading all of the posts about hydro i am really thinking that i might not want to try it despite what my uros think. i am only 19 and i am in pain but i guess at the same time i do not want to make anything worse you know. i feel bad because i trust my urologists but... wow if i made anything worse i think that would be horrible considering my age and being in college and working a lot and what not. i still have a lot of life ahead of me!! i need advice please! i got a cysto three years ago with a different doctor so now my new urologists would like to look inside again and do a biopsy and hydro while they are in there. would it still be beneficial to do the biopsy and cysto alone? :( :confused: :(

[waterflow]

I don't think I would do a biopsy again. I only had the one done 12 years in the beginning. Has anything changed bladder feeling wise since the last one? A cysto might not be a bad idea. Would give him a chance to see how things are going on in the bladder. I've had it done I think 6 times, if I remember right, over the 12 years but I don't blame you on being weary of it all. You never know really what will help, what won't and what might make it worse.

[BT2008]

Hey Ducky,

I am so sorry you have IC at such a young age!! Here's a (((BIG HUG)))!

The difference between getting the cysto alone and getting the cysto with the hydrodistention, is that quite often the cysto alone shows no damage to the bladder lining at all! It is only when then they put water or air into it that the damage to the mucosa lining and deeper layers becomes evident. And this is what tells the urologists the extent of the damage to your bladder. Also, you are under full anesthesia so you will not know what is happening while it is being done.

Yes, the hydro can make the pain worse for a few days afterward (plus a biopsy alone will probably hurt as well), but after a few days I could not tell that it made my overall pain any worse at all! But, I have a severe case of IC--verified only after that hydrodistention--so I am in a lot of pain all the time. I would, however, do it again if my urologist thought he needed another look inside my bladder.

If you trust your urologist, just talk to him/her about your fear that it will make your IC worse for the rest of your life. I finally had to come to terms with the fact that I will have IC for the rest of my life anyway, in some form or another, so the more my urologist knows about my bladder the more he can help me as time goes on!

Hugs,
~Beth

[Briza]

Ducky
I would like to reply to your post in more detail as I do have some things to say that may be worth considering, since I have had had cysto'/hydro/biopsy and some years behind me of expereience with ic diagnosis as does Waterflow and also some years behind me being member on this board (thank GOD for ICN!!). I don't think your age, being 19, has as much to do with making the best descision you feel comfortable with going thru with this procedure...because all the pros and cons must be weighed at ANY age.

But yes, there are some things I would like to comment on but it is late and I am tired so hopefully I can post tomorrow or soon after!!! In the meantime, I think it is good for you to continue to read more posts here....especially those by longtime and/or very experienced members because those who are longtime IC patients or longtime members of this board seem to be the ones to give the most accurate and helpful advice....those members are the ones I have learned to rely on the most.
I will write more tomorrow if I can about your current predicament!

[Ducky31]

thank you guys! bt2008: i have had a cysto before and i did show inflammatory tags and glomerlurations (however you spell that word) but that was 3 years ago with no hydro or biopsy. so i do show ic even without the hydro for sure. now three years later i have new urologists so they want to do all three. waterflow: my symptoms have not changed since they started when i was 16. the only thing that did change was that i developed vulvodynia. also why would you not get a biopsy again?
i have read a lot of what other people had to say about hydrodistention and it scared me! -ducky

[Ducky31]

oh and by the way :) i am not afraid of getting a cysto since i have done one in the past. i am basically just worried about the hydro and biopsy..considering when i did urodynamics i could only hold 212cc before i felt like i couldnt hold it anymore. .... :( . thanks for replying you three:) . i am just really afraid:help:

[BT2008]

bt2008: i have had a cysto before and i did show inflammatory tags and glomerlurations (however you spell that word) but that was 3 years ago with no hydro or biopsy. so i do show ic even without the hydro for sure. Oh, I didn't realize that a test had already confirmed glomerulations. Well, in that case, I hope you will still consider speaking with your urologist about your fears.

Since your new urologist is obviously familiar with IC, he/she knows much more than any of us here what the actual risks are for doing these procedures. And only they can tell you why they want/need to do the hydro, which should carry a lot more weight than anything any of us can say. I can also understand why a new urologist would want/need to see for him/herself the condition of your bladder now, especially 3 years later. Evidently, you have a very severe case...

Whatever you decide though, I do hope you find some relief soon!
:grouphug:
~Beth

[BT2008]

Also Ducky,Ducky
I don't think your age, being 19, has as much to do with making the best descision you feel comfortable with going thru with this procedure...because all the pros and cons must be weighed at ANY age.I agree that age should not make a difference when it comes to IC. Plus, the more you do now to get proper treatment, the better chance you have of insuring that you will have a much better future!

~Beth

[ICNDonna]

It's been many years ago (1975) since I had my first hydrodistention and it definitely helped control my symptoms for many months. I am among what I have read is the 50% of people with interstitial cystitis who are helped by this procedure. I had #42 in May of last year and I'm still doing well. It may be that your doctor is hoping it will help your symptoms.

Just to clarify, during an office cysto (no distention) water is put into the bladder so the lining can be seen. The bladder collapses, much like an empty balloon, when it's empty so the water is instilled partially fill it.

If there is anything my doctor sees during a hydro that is questionable, I would expect a biopsy to be taken. I didn't feel any more discomfort when the biopsies were taken.

I hope this helps.

Donna