Those with Botox...

[melbel]

ever had a problem with leakage?

[Daffie]

I haven't had any problems with leakage.

[melbel]

Thank you for your reply. Can you tell me about your experience with Botox? Do you have retention? Do you have to self-catheterize?

[Daffie]

I had problems with retention and had to self-cath occassionally the first time but when the dose was reduce I didn't have too much trouble with it. I do have PFD and sometimes it causes retention.

[melbel]

Do you know what doseage you had the first and second time?

[IcyAngel23]

Melbel-

I've had botox done twice. I'm not sure of the exact dose but it was half of a vial.
I had 30 injections all over the bladder. I had a little retension but my dr gave me Cardura to help with that. I didn't need to use a cath. Cardura is used for many things including high blood pressure and BHP( benign hyerplacia) I think that's how you spell it. Something in Cardura helps with retention. I don't know why but it does work. So retension doesn't always lead to painful caths. I have another thing to help you if you need to cath. My dr in San Diego( Dr. Lowell Parson's ) gave me a supository for the ureathra. It is a rescue cocktail that works amazingly. Instead of lido gel this supository melts slowly with your body heat and it is absorbed more effectively that the other stuff. I get them from a pharmacy in San Diego where they are compounded and then sent to me. Not many drs. know about this. My dr here in Chicago didn't know about it until I came back from seeing Dr. Parsons. I have such a bad case of IC my parents flew me out there to get his opinion because he is one of the top dr. in IC. I hope this helps you . Feel free to ask anything else.

Kristin

[melbel]

Kristen,
Thank you so much for taking the time to respond. Everyone talks about retention, but what does it feel like exactly? Like you have to go, but can't? Like nothing at all, but you know your bladder should be empty?

[icjen]

I know when I'm retaining by the feeling that I still have to go alot, but can't. Usually my IC belly kicks in if I'm retaining...although sometimes it's there when I'm not. I'll also have alot of pelvic pain, more than the usual. Also, you know, if I'm feeling like my bladder is ready to burst, but I'm only going small amounts.

[IcyAngel23]

Melbel-

For me retention was a few different things. One was having the urge to go but couldn't fully empty. (which was right after the injections and a few days later) Second was having no urge but a cramping pain telling me to empty.(This happens once the botox kicks in fully around 7-10days after injections. Mr dr gave me the cardra right away because it makes emptying easier on the bladder by relaxing it. The retention didn't last more that a few weeks tops. Retention is just your bladder reacting to the paralyizing agent in botox. It really is more bothersome than a problem. More trips to the bathroom pretty much. Hope this helps

Kristin

[melbel]

All of this is really helpful. I made an appointment to see Dr. Parsons in January. I just want to get an idea of what to expect if I proceed with the Botox. I have this overpowering fear that my bladder will just give out and I'll have leakage.

[bellaluna05]

Could you guys tell me where this Dr. Parsons is please. I am due to have my bladder and urethra removed in a month by Dr. Raz in Los Angeles. I heard he was the best, but now I keep seeing Dr. Parsons name. I have had many second opinions and they have all said that my IC is so severe that I have no other choice other than surgery, but I desperately want to find a way out of it! I just turned 30 and I just can't seem to get mentally ready for this.
Thank you,
Lara

[melbel]

Hi Lara,
Dr. Lowell Parsons is at UC San Diego. He has a website also. I used to go to Dr. Raz, but Interstim was his solution for everything. Definitely get a second opinion. By saying that, in no way do I mean he's a bad doctor or anything, but our opinions differed. I'm in Los Angeles also. If you cannot get into see Dr. Parsons right away, I may have some other ideas. If I can be of any help, let me know.

[IcyAngel23]

Melbel-
Dr. Parson's didn't do my Botox and as far as I know isn't doing that treatment. I saw Dr. Parson's after I had botox done twice. I loved botox but it never helped with the pain. Plus my insurance didn't cover the botox but the surgery they did. I had to pay $500 out of pocket for the botox solution. It got pricey. Dr. Parson's will work even with the hard IC cases that I think is what thrives at. He has me on heparin injections and I have a little improvement. I've only been doing it for about 2 months though. Dr. Parson's and his team will help you in anyway that they can. They work with ym dr in Chicago to stay on top of my treatment. Hope everything works out for you. Dr Pasrons nurse Mary Ann is just the sweetest.

[melbel]

Ok, who did your Botox then? I'm looking for a doctor who Botox experience to administer Botox. So he doesn't do Botox at all?

[IcyAngel23]

Melbel-

Idon't think he does botox but I don't know. My dr is here in Chicago. Dr. Parsons is just the dr I went to for answers and is heading up my treatment thru my dr here.
ask his nurse Mary Ann if he does botox.

[melbel]

Thanks. I'm looking for a doctor in the LA area who is confident in his ability to perform the Botox procedure. I've yet to find one. I don't mind traveling. I'm still going to see Dr. Parsons. maybe he can recommend Botox. I have absolutely no pain, but only urgency and frequency.

[Dianne]

Tell me about the suppository. What's in it?

[Jennyanniedots]

Kristin,

I am curious about this urethral suppository, for pain. I have mostly urethral pain but do not self cath. Do you have a recipe?

Thanks!
-Jen

[ICEL]

Hi,

I had the Botox Injection on 1/10 - have some retention - can't fully empty bladder. My main problem is Urgency/Frequency - I still have not cut down on peeing a signficant amount. Did you have urgency/frequency? How long did it take your Botox to fully kick in?


Melbel-

For me retention was a few different things. One was having the urge to go but couldn't fully empty. (which was right after the injections and a few days later) Second was having no urge but a cramping pain telling me to empty.(This happens once the botox kicks in fully around 7-10days after injections. Mr dr gave me the cardra right away because it makes emptying easier on the bladder by relaxing it. The retention didn't last more that a few weeks tops. Retention is just your bladder reacting to the paralyizing agent in botox. It really is more bothersome than a problem. More trips to the bathroom pretty much. Hope this helps

Kristin

[LBUSH49]

Hello My name is Larry ,I don't know if I'm the only male or not ,I had the mitro stoma operation , and have had alot of problems with leas throgh my stoma which is in my bellybutton ,, now I've tried 4 different medications I had 15 Injections of BOTOX , for me it didn't work out then they tried a Bladder Stimulator trial for 2 weeks and had that removed it didn't help , my problem is I've had 7 back operations causing my bladder to not work right ,I have a NUEROGENIC BLADDER , I evenhad a Supra Pubic Tube ,still no help,since I got hurt in 1985 I've had 22 operations,now my Dr. says he thinks my only thing I have left ,so I can live a some what normal life is to have a Bladder ByPass operation ,now I'm not sure if this is on the same type of problems you are having or not ,But the Botox injections weren't painful now being a male it might be alot different for a woman ,That I don't know . But good luck and may god bless LBUSH47@YAHOO.COM