I'm nervous about botox injection Thursday

[George]

Hi Everyone,

I am scheduled for botox injections on Thursday. I am really now starting to get cold feet and wonder if I should go ahead with this at all. I'm scared stiff that I will go into urinary retention from it. My uro has said this is a possibility but it is dose related.

Any words of encouragement or warning would be much appreciated.

George

[momw/ic]

Hang in there! It can't hurt to try - that was my motto. I figured I was in such bad shape that it couldn't get much worse. Now I am TONS better. The incredible improvement has been in frequency. I pee about once every 4-5 hours! That is a miracle for me! I am also sleeping through the night about 7 hours without getting up at all most nights and only once other nights. I hope it has the same relief for you! My finger are crossed for ya!

Pam :grouphug:

[ICB]

Dear George:

I've heard many patients say that it has worked wonders for them; it's helped them control their pain, frequency and burning. :)

Those patients that have received too much botox have gone into retention and have had to self-cath - in some cases for months. :(

You may want to ask your doctor to start out using a small amount to avoid retention. In future treatments, if you find the amount is not enough, ask the doctor to increase the amount until you reach a comfortable level.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB :flower:

[IcyAngel23]

George-

If you have retension it really isn't a problem. It is very rare but you can take a pill to ease it. You don't always need to use a catheter. The pill is named cardura. It worked for me. I was worried too but I've done it twice and it all worked out just fine. Done worry about it. Botox has really helped me with freq/urg not pain. Some find relief from pain too. Some advice about after....... Take it slow and baby your bladder. It is a surgery so after the injections your bladder needs to heal. Ask your dr to put an instill of lidocaine, sodium bi carb and heparin. This will help soothe your bladder from the surgery. I was completely out for the injections and i would recommend that.
Let me know if you need any other advice. Take care.Good luck.

Kristin

[MarthaB]

:) Hi George, I'm sorry you feel so nervous about the botox injections, but I have read some really good things about it, I'm sure you will be fine, If it will help with your frequency it is definately worth going through with it, and you won't know unless you try, :grouphug: martha

[George]

Thank everyone for your replies. I'm feeling a little calmer today about it all. Will post once I've had the injections.

George

[nss]

Just wanted to wish you all the best for Thursday. I hope it all goes well for you.

[MimiG]

George, how did the Botox injections work for you? Hopefully no pain. I hope treatment works really well for you as it has for others.
mimi G

[mayray518]

I am doing fine now on elavil but if I wasnt I know I would try the botox. Wonder if they would give me a little discount on the side and put it in my face for the same fee (ha).

[andcohen]

Hi George, Just wondering how you have gone with the botox?? The one thing I would fear is the retention, as I have so much trouble with that anyway. I haven't heard of many people here in Australia having it done but I am sure the are a few. I think you are very brave for going along & giving it a try. If you don't mind I was wondering who your Dr. was ( you are in Melbourne right?) I am on the search for someone new but it just the expense of getting there at the moment.
Anyway hope all is going well & look foward to hearing your results.
Take care
Andrea :grouphug:

[George]

I had my first botox injection on November 3. The doctor injected 200 units into my prostate and said that I would come back to have bladder injections at a later date. I have unfortunately gone into complete urine retention and after numerous visits to the emergency room now have a suprapubic catheter and a leg bag. I have been too humiliated to post anything on the boards. I am in so much pain from the catheter and just feel like giving up. I don't know what else to say at this stage I am just very very depressed as I was hoping for some sort of miracle with the botox. My life is so much harder than before with care of the catheter and leg bags and the pain at the insertion site etc. I have been keeping this all to myself and just did not want to tell anyone about this. Anyway I have to go now.

George

[Dianne]

So sorry, George. We all react differently. It's not your fault. Botox was a nightmare for me too but I didn't have anything else to go to and I had to try it. It will wear off. It's just going to take some time.

[Eccles]

(((George)))

I'm so sorry that you have had this reaction, & hope that it will soon 'wear off', hugs

[Rose Fish]

Dear George: Thanks for taking the courage and strength to write on these boards. I admired you for trying the botox and I guess if you didn't try it, you would never have known the outcome. You have to face the fact that this is not a viable treatment for you and now turn the page over and see what other options you have. Try to be positive and realize that this retention is only temporary. You will soon be back to normal and never give up. I know it is easier said then done but just try!!


Take care, Rose Fish

[ICB]

George:

As the other members have posted the retention WILL wear off. I have heard from many patients that have gone through the proceedure and into complete retention that if you have to self-cath - to ask your doctor for Lidocaine to numb the are prior to inserting the catheter; this may help to reduce or eliminate the pain.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes for a speedy recovery.

ICB :flower:

[ICNDonna]

I'm so sorry you had such a bad reaction. Hopefully the retention problem will go away soon.

Sending warm well wishes,
Donna

[George]

Thank you to everyone for your concern and good wishes.

George

[nss]

George I am so sorry to hear about that the Botox didn't work for you. Please there is not need to feel humilitated at all. We are all here to offer support for each other whenever we need it.

As ICB mentioned Xylocaine I have that and use it for my Vulvadynia flare on occasions and it does help me. From memory its around the $20 mark. It comes in an ointment & gel. I believe it has comes in two strenghts and I think the 5% is stronger (not 100% sure of that). I have the 5% one.

On the tube it says:

Xylocaine 5% Ointment
Linocaine..........50mg/g

I hope the retention doesn't last too much longer and it wears off soon.

Take care,

Nadia

[MarthaB]

:) Hi George, I am so sorry things diddn't turn out the way you had hoped, but you had to give it a try otherwise you will always wonder, you absolutely don't have to feel humiliated, we are all here to support you, and care for you, and like the others said the botox will wear off , it will take a little time.
Take care Martha

[George]

My life is extremely miserable at present with the retention situation. I feel quite sick as well and the doctor thinks I have an infection and started antibiotics. I feel like I want to pee all the time as before despite having a suprapubic catheter in. They have taken off the leg bag today and put on a clamp so I have to hold the clamp over the toilet to empty it. I have to say I am very very depressed and am trying to hold on to some sort of hope but it is hard to find anything to hang onto. I feel like I am going down and not going to be able to get up from here. I am trying to work and it is just so difficult. I can't stop crying all the time. I though things were bad with my urinary symptoms before all of this but I have to say this is sheer hell. I have pain in my abdomen where the catheter comes out and my underpants feel like they are cutting me in half. I just can't find anymore reserves of strength to get me through this and I feel like I am not going to make it. You would think with a catheter in that it would be a holiday from peeing but the feeling of wanting to pee will not go away plus the pain of the catheter feels like it is stabbing me. I will try to take this a day at a time but it is just so hard.

George

[gg56pa]

Hi,

I had botox infections in August 2005 and I had one side-effect that the doctors did not expect.

The injections were in my pelvic floor which gave me relief, but the injections effected my bowl muscles and it is almost inpossible to go to the bathroom.

When I do go, the hard stool has to be pulled out manually and this is associated with red blood.

[momw/ic]

George - I am so sorry this has happened. I have been where you are with other treatments I have tried. In fact I was in your exact situation at Christmas time last year complete with leg bag and everything except that it wasn' the fault of botox. I was so hoping that the botox would help you like it has me. It is the ONLY thing that has helped me. You are in my thoughts and prayers. I know what that catheter feeling is like and you feel like you would feel tons better just to get that thing out. I can relate to the feeling sick because of it as well. Again, I am so sorry. It seems that the nature of this disease is hopes and disappointments and hopes and disappointments. Hang in there and don't be afraid to tell your doctor or anyone how you are feeling. Especially around here - we have all been put through hades and back so don't be afraid to share with us. Just vent if you need to - we are here for you!

[Daffie]

So sorry George,

The first time I tried botox I had minor problems with retention - I always found it easier to empty my bladder after setting in a tub of warm water to relax all the muscles. How much did you have injected? Did you have the urethra injected too? Hope you feel better soon.

[tigger_gal]

Don't give up George, don't let IC win.... We all at one point or another from some sort of a treatment have been where you are.... has any one discussed interstim for your frequency and urgency? have you tried, Elmiron, hydroxizine, urised, elavil?
You should never feel embarassed over a failed treatment, you didn't make it fail... it just didn't work and created more problems...

sending you hugs and hope you feel better soon.

[Babs RN]

George,
I have had a little trip to the hospital so I haven't been around. So sorry. Hang in there, you'll make it.

Hugs,
Barb :grouphug:

[George]

Thank you for your support, it is truly much appreciated. I am trying to take each day as it comes. I have been quite depressed with everything. I still feel like I have to pee all the time even with this damn catheter in. The tube comes out of my bladder below my belly button and I have to do a dressing to it twice a day to keep it clean. I feel a lot of pressure/pain in my bladder because of this tube and the pain goes down my penis.

I am not feeling really well painwise and with this depression and just can't face going out to the shops to do Christmas shopping so I might have to postpone Christmas this year.

George