Just had the Cystoscopy biopsy procedure.... is this normal?

[Arabelle Amara]

To start off with the past 3 weeks have been a nightmare.... the first week I was unable to leave the bathroom... literally. I would dribble a little bit every 30 seconds to 2 minutes. My husband brought in his notebook computer so that I would have something to do while sitting there. (We definitely need a cushion for the toilet seat). lol
Then the second weak, the urgency and frequency went down a bit to around every 10 to 30 minutes, but I had the most severe pain in my sides that I've ever experienced.... I saw the urologist and he told me it was all in my head and at which point I went to see a specialist in a hospital two and a half hours away from where I live....
Well, I'm still awaiting the diagnosis to confirm that what I have is IC from the biopsy. I went in last Monday (the third week of this nightmare) to have the procedure done. For most of the week I had to stay in the hospital with the biggest catheter I've ever seen. I had so much blood.... (the nurses were bringing in buckets to empty my bladder of blood and using these syringe like things to try to continuously clean out my bladder. Talk about ouch!) so much pain I couldn't move. I was forced to lay on my back the entire time.... During the entire week the catheter, I believe, was the culprit to the pain. I couldn't eat, I couldn't sleep. It was a nightmare, and now that I'm out of the hospital, I've still got blood (but it's not too much now, though I do bleed more if I move around too much) and a horrible lot of pain.
I've been using heating pads, taking pain relievers, getting a lot of bed rest... nothing helps.
When the doctor looked into my bladder she said it looked bright red... and as though the lining was torn up. Her words were "it looks very painful" along with "it was not a pretty sight"
They gave me some blood replacement liquids through an IV while I was there...
Has anyone else had to go through this?
I've been having these symptoms for a couple of years now, most of the time it's a chronic problem. I tried ********* for a while, and it helped for a little bit, but then it started flaring up again. :(
I wanted to prove to everyone that I'm not crazy by having this procedure done to show there is something going on with me, but now it seems like I am going crazy regardless.
Ick...

[vm]

Did your doctor give you pain medication for after the procedure? I know you mentioned pain relievers, but I wondered if you were given any narcotic meds to get you through the first several days after.

It's not unusual to still feel pretty crappy a week after the procedure. You might want to be checked for a UTI - it is very common to develop one after catheterization and that can lead to a very unhappy bladder.

Sounds like you had a lot of blood loss - moreso than most of us have after that for sure. Your bladder will probably take some extra time to heal up after all of that trauma... :(

I hope you feel better soon. :kissing:

[Katrina]

:welcome:
I really feel for your suffering.

Your story of blood loss reminds me of when I lost my colon from what we thought at the time was ulcerative colitis.
I know that IC has been the worse pain I have ever experienced though. To put those two experiences together breaks my heart over and over just immagining it.
I recommend you look at the http://www.ic-network.com/handbook/
Please keep us in touch of the results of your biopsy. I sincerely hope they go well.

I hope you feel better soon. Many well wishes to you :kiss: :kissing:
:grouphug:

http://www.ic-network.com/forum/showthread.php?t=7562 this link is a pain managment post. The second page has 4 attachments...the last one is a list of ideas for IC pain.....take a look if pain is problem for you.

[ICNDonna]

If you're not receiving adequate medication to control your pain, I suggest you telephone your doctor and ask for some. It's not unusual to have some bleeding after a cystoscopy with hydrodistention, but it usually only lasts a few days.

You may need to be checked for infection --- that can cause bleeding too. I hope you feel better soon.

Warm hugs,
Donna

[Arabelle Amara]

After the operation, there was one week of severe blood loss.... I'm into my second week now and the blood is tapering off. The water isn't just only bright red anymore...
I do know about checking for bladder infections, but I'm not sure about the accuracy of checking on them, especially in women. Before, I had gone to my local doctor and got checked. I was told I had an infection and was prescribed antibiotics. I didn't take the antibiotics. Instead, I went immediately to the urologist and showed him the results from the other doctors. He tested me and said there was nothing wrong...

I just tried doing a little bit of cleaning around the house because I couldn't take it anymore.... soon afterwards it caused a bit more bleeding and little tiny bladder pieces to come out when using the bathroom again. This is really quite gross...

They gave me some very strong pain medication, but it isn't working. All pain medication so far feels like a placebo. I guess the bladder isn't an organ that can get adequate (spelling?) pain relief from medications...
The medication just makes me feel sicker... faint, dizzy, blurred vision, extremely weak, nauseous.... and the pain is still there, with noticably little difference in the pain...

[Arabelle Amara]

hehe Here goes another novel.
I'd also like to add.... that before this operation... on a daily basis there were other things that would cause a lot of pain. Taking baths are impossible... the water is a huge irritant... (even if it's a sitz bath... Then I thought maybe the baking soda effect would help but I could only stand it for about a minute before the pain was too intense) and even taking showers. I've tried varieties of soaps, shampoos and conditioners.... looking if there was something there that was a trigger... I thought maybe the water was bothering me... but even when having moved to another location with a different water source, it was still a problem.
Often I have to run around with a skirt and no underwear because of pain... I thought maybe it's an irritant in the laundry detergents...
I had already researched "thoroughly" on IC before doing the procedure to diagnose it... and tried the elimination diets... it didn't seem to matter what I ate or drank. I had a diary of voiding and foods for about 3 months.
The symptoms seem to move from one thing to the next. There is never a break, but there are definite changes in symptoms, and then the cycle seems to just repeat itself.
It starts off with this inability to leave the toilet for hours at a time, with very little voiding. This lasts about a week, then it goes on to every 10-30 minutes voiding a lot... Then the following week, it's voiding a lot every 30 minutes to an hour followed by intense thirst and then the need to void again. Eventually, it recycles to where I was at week one again. Of course... then there's this horrible side pain that occurs in any of these stages. It doesn't seem to have a preference.
I've always been a water drinker... I could never really drink anything else... Not that I "couldn't" but because I've just always preferred water to anything else...
Before any of these symptoms started up, I was someone who enjoyed vigorous exercise... eating healthy.... One of the worst things is having so much energy from being an active person and not being able to use it!
Nothing is making any sense... I just can't figure out what the trigger is.
This all seemed to happened shortly after getting married, and I just want to be able to hold or hug my husband without too much pressure and pain in my bladder/urethra areas. :(
Being able to work is seeming to be less of an option, and this is a huge depressing part for me. I want to work, and I want to have a job where I'm very active in working... physically active. Accepting that there is this disease is the hardest part, though I know it is crucial to accept it and learn to live with it. I just wish I could figure out how to learn to live at the moment and for the future...

[vm]

Maybe when your first doc tested for infection he only did the urinalysis? Maybe the uro actually did the culture and saw there was not an actual infection? That is possible.

I would still really encourage you to have your uro run a culture this time around. It is really possible that you have a UTI - especially after all your bladder and urethra have been through recently. And a culture will either show a bunch of growth or not - it's pretty accurate.