Ready to cry

[HollyS]

I just don't know what to do. I thought the hydro I had last week was helping, but now I am feeling horrible again. This full bladder feeling is driving me crazy. I called my doc and went in for a urine culture yesterday, but they said it will take 48 hours to get back cultures. Obviously nothing has shown up yet. I am so scared I will not get back to how I was before where I could at least function normally. (and I was not taking any meds or watching what I ate) I have been on the since beginning of june, on Elmiron since the end of April, clarinex for just over a month and cystoprotek for almost two months. I just don't know if anything will work. My doctor made an appointment for the end of october because he said by them the meds will hopefully be working, but I can't stand all this bladder feeling until then. What if it does not help??????? WHat if nothing helps??? I have had this for 20 some years and am afraid maybe everthing has just worsened. I could hold 700 cc under hydro and he said I had a moderate case. Next weekend my kids bring animals to the fair that is an hour away, my nephew gets married on the 19th and i have to bring my daughter to college. I was soooo hoping to feel better by them, but I feel horrible. Sorry for being so negative, but I am scared my symptoms will never get to the point where I can live a normal life again. I am afraid every day I go that I don't get everything under control means more damage to the bladder and then what????????? Thanks for listening.

[Kara29]

Holly,

You don't live in NY by any chance do you? Because we have a HUGE NYS Fair 5 minutes from my house and I go every year.

As for the full bladder feeling, can you call your doctor back and ask him if he can do a quick bladder scan on you to see if you are emptying all of the urine out. It can be done under ultrasound or right in the office with another type of bladder scanner. What you do is, you go in with a full bladder and they scan it. Then you empty it and then they scan it again and it shows if the bladder is completely empty or not. If it is they will tell you, if there is still urine in there you may be retaining and that can be quite painful and full feeling. You could be retaining from the Hydro or it could be one of your medications. Bladder Scans can tell a lot about what is going on and why.

That is my suggestion to you and advice.

Well wishes for the fair, the wedding and bringing your daughter to college!

Kara

[Trishann]

Holly, Kara is right about the bladder test, but you will have to be able to hold your urine in. If you can't hold the urine the test will not help.

I would definitely call the doctor again and let the doctor know that you are miserable with this severe pressure. Maybe pain pills will help you, it does help me. I know it sound silly but ice pack helps alot but it is only temporary. I pray that your doctor can help you. Sometimes these severe pressure will come and go. Sometimes food, medications, lifting heavy things, can even make it more severe. Sometimes it just happen because the bladder is not normal.
Somehow get the doctor to understand that you are in pain.

I hope you can relax and hope you will start feeling better, Trishann

[HollyS]

He did check if I was emptying good on my first visit in June and I was. I can hold 2 cups or even a little more (hard but I can) so I think I am empyting fine. At times I feel worse after I pee for a while and then it will subside some and then more pain as the bladder fills more. I have asked about being put on Elavil but he does not want to do that as it said it will mask the pain and we will not know if the other meds are helping with the inflammation. At this point I really don't care. I just want to feel better. Also, this doctor is 2-1/2 hours away and I have to take off work to go see him. Luckily I work at home, so that helps some. No, I don't live in NY. I live in the Upper Peninsula of Michigan. Nothing up here as far as support groups either. Thanks for the advise.

[ICNDonna]

Some people find that it takes several weeks to recover from a hydrodistention so you might want to give yourself a little more time. It does sound like infection is a possibility.

Sending healing thoughts,
Donna

[HollyS]

THanks Donna. I did go for a urine test on Thursday and have not heard yet. I will have to wait until Monday and call if I do not hear anything. My doctor said too it could be a few weeks for things to calm down. I felt pretty good 5 days after, but then started having more frequency and urgency on Tuesday (one week after hydro). I know I need to give it time, it is just so hard when you feel miserable. Thanks for the hugs. They really help. My kids are ready to go off to college, and I have not felt well enough to do anything with them this summer and I don't know if my oldest will be back next summer as she is applying to graduate school. Frustrating. Thanks again.

[jah]

Hi Holly. I am going through the same thing you are. I am in the middle of a horrid flare--supposed to go on vacation tomorrow to MI, and the culture will not come back until Monday. I am miserable. My pee burns horribly and I am depressed. I am on Elavil, but it does not help. I wish you the best. What pain meds do you take? What over-the-counter meds work? I can't seem to get doctors to give me the good stuff. Apparently they don't think this is real pain.

[July]

:pray: :grouphug:

[HollyS]

JAH - I am not on any pain meds. My doc has not given me any. He is trying to reduce the inflammation with the elmiron and clarinex and hopes I will not need pain meds. I don't know. I am also taking cystoprotek, but have only took it for 1-1/2 months now, so too soon to tell. I am not really in a lot of pain but am uncomfortable, so I don't know what to do. Thanks.