Botox 4 weeks ago-my progress

[Indy]

Well, I'm still not sure if it meets my expectations.

My urgency and frequency and cut in half-but the retention is really horrible.

I think I had a really strong dose (300 cc's) based on articles I've read and this message board. I don't know why my doctor does this much all in the bladder.

My bladder pain is much less but I have pain in the urethra and abdominal muscles from straining to get the urine out.

I'm scared I'm leaving too much urine in there and will get an infection. It's like being constipated in the other area.

My uro says the retention will start to go away as it wears off.

It's not bad enough to catheterize but my bathroom trips take 15 minutes.

I really think I'm straining too hard.

[Dianne]

What worked for me was to put my fingertips over the pubic bone and kind of milk out the urine. It's called "crede" in the nursing world. Didn't have to cath which I really can't handle, my urethra is a mess and didn't have to strain. Even though I'm way past the botox effects, I kept on crede-ing to keep totally empty especially before lying down because the emptier I can be, the longer my chances of staying down a few mins. are. Good luck.

[DanaW]

You def. don't want to be pushing/straining so hard. I think that is why a lot of us get PFD. I hope your retention gets better.....

Dana

[CinSin]

I have minor retention after botox but I have never had 300 units injected only in my bladder. The only time we used 300 units was the last time and I had the bladder, urethra, pelvic floor, vestibule and bartolin glands injected. I find that when I have the urethra and pelvic floor too, I have less retention then I did when I just had the bladder injected. Good luck and hope the retention eases up soon.

Cindy

[Flore]

Indy: I think you are better now, and I´m so happy. I hope your retention will be better soon!!

[Indy]

Botox 4 weeks ago-my progress

Thanks ladies for your kind words.

I had a big flare yesterday-I can't understand that but today I felt pretty good.

Do other people get flares with Botox?

I wonder if I would feel an infection?

I'm still not sure what I think of this treatment. I'm trying not to push at all but then I know I'm walking around with a full bladder. I'm only trying really hard to empty before bed.

I haven't had the guts to eat much that I have dreamed about. I really want to try vitamins since I haven't eaten anything in 1 1/2 years.

[CinSin]

Indy,

Have you tried cathing to see if that eases on the pressure. I have to occassionally cath the first month after botox. I use the pre-lubricated cath by SpeediCath or AstraTech. They will both send you samples.

Good luck,

Cindy

[Indy]

Botox 4 weeks ago-my progress

Thanks CINSIN. I did get the samples but haven't usesd them.

So you thin the retention will wear off soon? Does it go away completely?

I've had a few flares with the Botox-I think from forcing things.

Good luck with your procedure Monday.

[louise]

Botox And Urinary Retention

Hi Indy,

I have only had two Botox treatments - 200 units each time internally into the vagina to help with the pain in the pelvic muscles of which the bladder is a muscle. I noticed quickly that I had retention also because for me my problem is usually the opposite. If I were you, I might suggest you get checked out for a UTI. Since my retention went on for months, I kept getting infections and would have to go on Cipro to treat it. After I went for my second treatment on March 18 which was done in the hospital I became ill a few days later and was diagnosed with C.Difficile which is an intestinal bacterial infection that is caused by being on antibiotics and then being exposed to the bacteria in the hospital. So now I am on Vancomycin which is the strongest antibiotic we have. I had the C.D. three years ago and it took me more than ten months to get rid of the infection.

I have heard about a drug called Cardura that might help with the retention if you wanted to ask your doctor about it. For me, I have decided to stop the Botox treatments because I can't risk getting UTIs and having to go on antibiotics. I have had the C.Difficile infection three times now and in 2002 I nearly died from the effect it had on my heart due to dehydration and my intestines almost rupturing. I will just be glad to get rid of the C.Difficile and have that miserable pain out of my life. Hopefully then if I stop the Botox the UTIs will also stop and then I will deal with the IC somehow as I have tried practically all the treatments for it except removal of the bladder which my urologist said he will do for me like tomorrow if I decide I want to go that route. But I know that would not take care of all of my pain as I have had ten pelvic/abdominal surgeries so scar tissue is also a big part of my pain problem along with PFD.

Good luck and I hope you feel better soon.

LOUISE

[Indy]

Botox 4 weeks ago-my progress

Wow Louise!

I have never read about serious side effects of Botox. That is why I have been working so hard to empty my bladder because I wasn't sure if I'd feel an infection.

I have been getting checked for UTI's once a week and so far I've been clear. I am drinking a lot of water which if I save it up, seems to give the urine stream some force.

I really think 300 cc's was a huge dose.

I have had some really great pain free days-not every day but am adding back more foods and putting on some healthy weight I've needed after that stupid IC diet which didn't help and just gave me malnutrition.

I really hope you don't ever have to get your bladder removed. I really think the pain we've had for years is a pain curcuit set up that is in the spinal cord-like RSD of the bladder (like when someone loses a limb and still has pain).

Have you looked into nerve blocks? Not the Interstim. The last ICA conference had a lot of info on new pain treatments.

Good luck.
'

[CinSin]

Hi Indy,

I think the retention will ease up soon. I had 200 units in my bladder the first round and straining made it even worst.

Louise, I never heard of anything like what happended with you. I hope you feel better soon.

Cindy

[Indy]

Botox 4 weeks ago-my progress

Hi CINCIN-how was your procedure?

Hi all. My retention is definately getting better. I also got marcaine shots into the pelvic floor today and will be using an e-stim to work on the PFD.

I have gained 5 pounds since the Botox-I had gotten too thin but that's enough. I actually had a cup of coffee and that helped the retention since it's a directic.

Louise, I looked up that medicine. I'll keep it in mind. I did try flomax the second week but it didn't help and I have really low blood pressure.

[CinSin]

I didn't have the procedure today - my insurance company called Friday and denied it. I have to file an appeal. Been horribly depressed about it. Thanks for asking.

Cindy

[tulsateacher]

Dana--What is PFD you referred to from straining?

[CinSin]

PFD is pelvic floor dysfunction.