Very discouraged

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I am very discouraged. I was treated two weeks ago for white blood cells in my urine which indicated an irritation, not a full blown UTI. After 5 days of Macribid, I still have intermittent urination burning, and frequency and urgency. I have to have a repeat urinalysis. If it comes back negative, the diagnosis is more OAB and more Botox injections. A few weeks ago, I was lauding what I thought was the Botox continuing to keep my symptoms in check after 10 months. Now I probably have to eat my words and go for more injections. I am so discouraged and using my disposal pull up underwear at an increased rate. This sucks big time.

 

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That sounds awful. I hope they can figure out something

 

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Sorry to hear that. I was going to ask about the Botox thing. I’ve read in the forums it sometimes helps. I understand the whole cost too. This adds up so quick. Hope they can get it under control to some degree for you. I take oxybutinin for the bladder spasms. Helps to some degree. More comfortable at least. Is there anything they can try for you?

 

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Thank you for your kind words. Unfortunately, none of the meds worked for me.

 

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I am so sorry this is a set back. From what ive read Botox does have temporary effect but it is not a life time solution meaning stops working after about 2 years?

 

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My doctor said one of his patients obtained relief for several years. Everyone is different. It’s just a nasty, life affecting health condition.

 

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I am waiting for my second Botox treatment as the first treatment is starting to wear off after 8 months. I am trying a bigger dose next time to see if it lasts any longer, phil

 

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Hi guys, thanks for the info. Phil I hope the doc can come up with something that works well for you. Hang in there and know that folks are praying. There are a bunch of things to help make things manageable at least. I am thankful just for the simple fact there are much better items for us now than 10 years ago. Don’t be discouraged, if we are moving forward to a better solution then we can chalk that up as a win right?
Even if it is just small steps. That is a plus too.

 

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you might consider switching from a pullup to a good quality tab style diaper pull-ups do not have the capacity of a diaper

 

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@jrpoorman thanks for the encouragement. I have come to terms with wetting at random, I know from many stays in hospital that there are far worse problems to have. The Botox is a way to manage symptoms for a while, I know it isn't a long term solution. My consultant wants me to try sacral nerve therapy, but I have heard very mixed reviews, Phil

 

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Years ago they suggested the interstim unit for me. I wasn’t able to afford it then but may look at it if they suggest it again.
There is a clinical trial going on for an internal catheter system that I think will work amazing. Basically when you need to go you hold the control device and open the valve. When empty you close the valve and just change the thing periodically.

I really like that idea and hope it gets cleared for everyone. Better than diapers or having to intermittent catheter several times a day. Sorry, I forget then name of it. Will have to go through my emails to find the nurse who is doing the interview for the study. Have to run I’m at work.
Have a great day guys and gals