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]

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]

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]

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

:bunny: :bunny:

[Indy]

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]

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.

[Flore]

I was in a Botox talk yesterday, and I understood that Botox is helping with the OAB because helps stoping the bladder contractions

So I think that the retention that you mention is because of this. I never have had more than 50 units inside my bladder

Cindy:
I´m so sorry!!!, and when are you going to have any respond from the insurance company???
Are you going to assist to San Antonio???, I do, the problem is that I don´t have hotel yet, in which are you goig to stay???

Louise: I never have had the side effects that you mention, so I hope you will never have them again!!!, in fact, is very strange that I have an UTI

I continue with my pelvic floor contracted!!!!

Bye!!

[CinSin]

Hi Flore,

I am still going to San Antonio. I have an extra room booked, let me know if you want it and I will see what needs to be done to change the reservation over to you. I need to cancel the room if you don't need it by Monday.

Email me at yahoo address when you get a chance.

Cindy

[Indy]

Hi. Now it's 5 weeks and I'm happy. The retention is wearing off and my period is due and I'm not needing any pain killers.

I hope this continues to improve and lasts a while.

I spent almost $2000,00 of my own money and the surgery was much more of an ordeal than I expected.

CINSIN and Flore, I hope all goes well.

Indy

[deborah bush]

Indy I think your retention will get better. I have been getting 200 unites of botox in my bladder at a time. I had my last botox done in Jan and will have another one done in July. They have been helping my urgerncy & frequency. I am doing 3 year trail study with doctor in Miami. I hope you feel better. Hi Cindy and Flore!! I hope you all are doing great. Deborah

[Indy]

Hi. It's now been 6 weeks. I had 10 days of bliss, with the retention managable and almost no pain. I was eating a lot of things I had sworn off and peeing less than 10 times per day.

Then, something went wrong.

Is it possible to have flares on BOTOX?

I don't have an infection, I'm checked once a week.

I do have severe constipation. After I go, the spasms start up.

Maybe I have added to many foods too soon.

I'm really getting upset-after getting a taste of being normal again.

Any one with any ideas please!

[CinSin]

Hi Indy,

Botox is not a "get out of jail free card". If you eat things you are not use to eating, not only will your bladder let you know but so will your colon. Colon spasms can make you feel like you are having bladder spasms.

I have been able to do more and eat more since Botox but in moderation. Somethings will still cause flares but they are much more manageable now. I know what will cause flares and pre-treat before the symptoms.

Cindy

[Indy]

CINSIN, thanks for your reply.

The first thing I am going to do is get off the elavil which was causing retention and constipation even before the botox.

I guess I should have known better than to add to many foods back at once.

I also added back calcium citrate and cystaq and think one of them could be bothering me. I thought the cystaq which I took for years before the 1 1/2 year flare would help my lining heal.

So, you have given me hope that my Botox hasn't just worn off after 6 weeks and to get out of my denial that I am cured.

It seems the most important thing is to prevent constipation.

Thanks.

[Flore]

Hi to everybody!!!

Cindy: about the hotel, I have the reservation, anyway l sent you an email, did you receive it??

Deborah: Is nice to hear from you again!!

Indy: After Botox IN MY CASE is very common that I am able to eat more things than before it, only 2 things I can´t eat (strawberry and pineapple), but I have to be very carefuly with the food
I use to have flares after Botox, but like Cindy are managables
And after 2.5 years trataing me with Botox, now, I know that when I begin with lots of spasms after evacuate and void is time to begin in the next injections

I began with more frequency at night, and this is anoter symptom. I have often pain, so.... In June is going to be 8 months since my last injections, so maybe is going to be a good idea for the next injections (and the hydro and electrofulguration)

So Indy, take cara of the food!!!

Bye!!

[Indy]

Do any of you who have had Botox take other IC meds? I am wondering if this would be a good time to start elmiron since it takes so long to work to actually try to repair the lining or would it make the botox wear off?

Do you find you need other meds?

I'm getting off elavil slowly and trying ambien for sleep and klonopin and atarax.

[CinSin]

All I take daily is Bactrim for reoccurring UTI's. Other then an antibiotic I take Vicodin as needed and Valium only to manage after sex flares or if I have to ride in a car for more then an 90 minutes. But I don't need both daily - just to manage my symptoms when needed.

I took Elmiron three times and it didn't help but we have figured out that most of my pain is muscle, nerve and tissue pain. I probably have more vaginal and urethra pain and don't have much bladder irritation and burning.

I work with support groups and have seen where Elmiron has worked miracles but mostly with those who have irritation and burning.

[Flore]

I take daily Atarax at night

I have pudendal nerve pain too, so I was taking Neurontin, the problem was the head ache that I had everyday so I´m taking Lyrica (is better and soft than Neurontin, and the maker is Pfizer too), the prooblem with this is that causes me retention, so I try to take only with pain

I have irritation and burning inside the bladder so I have heparin and xilocain instilations too. And I use to take Bladuril (I don´t know the name in USA)

[Nics]

I had botox done about 4 weeks ago now. Mine was for severe pain. I was living on Morphine and had been for the last year. Pain has improved aabout 60% but I am permanently catherterised. Not sure when that is coming out. How long do you all find the botox lasts

[Flore]

I´ll have my injections next June 15, and I can´t wait, because the pain until I´m urinating is terrible

The last time that I had the injections was 8 months ago, so is very important to me to have them again!!!!

My dr in this time is going to inject the trigone, but the injections are going to be intra-mucus (????) I don´t know how can I say this, but my dr says that is a new technice and helps to relief the inflamation in the trigone. I will have too in my pelvic floor via vagina, in the urethra and he is going to see if he injects my pudendal nerve too

Nics: In the beginining Botox lasted in me 4 months, and now lasted for 8 months

[ese]

WOW! I had no idea Botox would last that long. Where exactly does a Dr inject the Botox? Or, is it like an instillation? I've read that for some it does help pain considerably. Has anyone else found this to be true?

[Indy]

I'm 2 1/2 months into the 300 cc directly into my bladder.

I have had several flares lasting days and they increase the retention I already have.

I went to get cathertized and after I thought I was empty, he got out 2 full beakers! The pain is from being full and staying in my bladder and irritating it.

When will this retention wear off? I had thought I noticed it getting better until I had a big flare from eating parmasian chees by mistake. I've also had flares from constipation and straining.

There are some really great stretches of time where I am so happy with it but I don't understand the flares!

It's impossible to reach my doctor by phone and I don't have an appointment until next month.

I'm going to see a pain doctor about an epidural.

[ese]

Indy-
Thanks for being honest - that's what I need to hear. I've been dealing with this crap (IC) for almost 4 years without a lot of help from meds, diet, etc. A year ago, I decided that maybe it was in my head, and I needed to learn to deal with it. I stopped going to Drs and started just trying to deal with it on my own (and with a lot of OTC meds). Now, I've realized what I knew all along - it's not in my head! I went back to my Uro (who, btw is a very compassionate person but I don't think he's very interested in IC) about a month ago, and he put me on one of the few antidepressants that I haven't taken. All it did was depress me - makes a lot of sense huh? :loco:
I had heard that the Mayo Clinic was the place to go after you've tried everything else. So, I called them and they decided to take me as a patient. I'm going the end of the month and I'm very optimistic for the first time in several years. I know Botox is probably my next option, and I want to find out all I can about it. You mentioned something about an epidural. What's the deal with that? I didn't think epidural injections could be used in the pelvic/bladder area. If they can, do you mind sharing what you've learned about them?

[Indy]

I have been reading about some nerve blocks. I don't know if they will do anything to me until the Botox wears off. I'm thinking, maybe they can calm down some nerves that are still firing off and weren't affected by the botox since it was only in my bladder.

I think 100 units would have been better for the first try. I can see how it does relieve the pain once the bladder is empty!

[Nics]

Indy - I had the same problem until my urologist put a permanent catherter in. It work a treat. I was going 4 or 5 times in a couple of hours, getting 100 -150 ml each time and then self cath and getting 600 ml. The permanent cath has made the pain ease considerably. Hope you find something that works.

[CinSin]

I am so sorry that you both are having such a time with retention. I never had that much trouble with retention but never had that much injected in my bladder. It has really worked better for me to have 300 units total but less in my bladder and more in the urethra and pelvic floor.

Flore, it didn't really help much to have my pudendal nerve injected.

Cindy

[Indy]

CINCIN:

How do they know exactly where to inject the pelvic floor? I have had trigger points injections there with marcaine with me telling the gyn where it hurt as she pushed on various spots.

Does it affect sex?

Wouldn't you know it, yesterday I had a great day and went out last night and didn't go for almost 4 hours with no pain.

[Rose Fish]

Hi Flore - I am from Canada and have a few questions to ask you about Botox.
I am considering seeing Dr. Smith from Texas or Dr. Chancellor for Botox.
Spoke with nurse and they see they inject botox into bladder in the office. Is this not painful????

Also, I read about alot of retention after botox in the bladder. Did you have alot of retention???

You also said that you still use an instillation of lidocaine, sodium bicar, and heparin in the bladder. How ofter do you need to do this??

Thanks so much.
Rose Fish

[CinSin]

Rose Fish,

I see Dr. Smith in Houston and his nurse Susan told me the other day that she gave my email address to a lady in Canada, was it you? I only know one other lady who had injections in his office in her bladder. She said it hurt and unfortunately it didn't help her. That was before he started doing pelvic floor injections too and to me that makes a world of difference.

Indy,

The doctor either maps out the trigger points before the surgery or has the PT or gyn map out the trigger points for him.

It really helps with pain during sex but I still have spasms after sex. The after sex flare isn't near as bad as before.

Please feel free to email me at csinclair@icutexas.com if either of you have any more questions that I may be able to answer for you.

Cindy

[Flore]

Rose Fish. I never have had retention, but as Cinsin, I never have had more that 200 units inside my bladder. In fact I only have had once in the bladder

I think Dr Smith is a very good option. CinSin invited us last year to me and my dr to her conference day, and my dr and dr Smith talked about the injections and I think that they have similar ideas and techniques for the way to inject

Cinsin: Thanks for tell me about the injections on the nerve, because next June 15th I´m going to have the injections and I was afraid thinking in the results of the injections in the nerve

As Cindy, my dr in the surgery room check the trigger points for inject them. And in the next injectios he is going to inject sub-cutaneus, I hope this really helps!!!!

Bye!!

[CinSin]

Hi Flore,

The injections didn't appear to help much at first but seem to have helped a little in the pudendal nerve. It has only been three weeks and from what I have been told by people having other pudendal blocks it takes about four to really know for sure if it has helped.

Cindy

[Flore]

Thanks CinSin!!!, anyway I talked to my dr about this possibility and he doesn´t want to inject my nerve. So in this time I´m taking Neurontin again, and is helping me (for now!!)

I know that when I get the hydrodistention, and Botox, I´ll be fine again!!

Did you loose sensivity in your clitoris with the injection in the nerve??

[CinSin]

Hi Flore,

No I haven't lost any sensation in clitoris, I haven't lost any sensation in the pelvic area with any of the botox injections.

Cindy

[Flore]

Thanks Cindy!!

I have an infection!!!!, so I have to take antibiotics before the surgery!!

[RedRose]

Is botox the same as Botulinum Toxin Injection?

[deborah bush]

Redrose botox is same as botox boximgilum what ever.(my speller is not great) I am going next month again for another injections of botox in Miami. Deborah

[Nics]

How much Gabapentin do you find you need to take for it to work. Im on 200mg three times daily and it made no difference. I only got relief when I had the botox done and am wondering with the expence is the Gabapentin worth it?

[Flore]

Well, I had the injections last June 15th. My dr did the cysto/hydro too so I was in the hospital for 2 nights

This time was incredible!!!!!!, I had a very big contraction in my pelvic floor, so in the surgery room, before I got sleep he checked me very carefully

He talked with the anesthesiologyst about the pain after the hydrodistention and about the contraction in the pelvic floor, so they decided to get me sleep for 24 hours. Wow!!!!!!!!!!!!!! it was incredible, because I didn´t remember anything. My mom said that I was in pain may be for 5 hours after the surgery, But.......... I didn´t remember!!!!, I was so druggy (??), in fact the nurse took my a shower IN MY BED!!, I didn´t remember very well this either

2 days after the surgery, my dr removed the catheter and I went to the wc to pee. And what was my surprise that I COULD VOID WITHOUT PAIN AND RETENTION!!!

He put 200 units: 50 in the trigone, and 150 in urethra, vagina and vulva (in the trigger points)

I saw the video and I was in shock!! I saw how whe he injects the Botox and inmediatly a little bumb (??) is formed (??). He said that he put 25 shoots

On Saturday I couldn´t sit, so I was in my bed, and on Sunday (In México was the father´s day) I went with my family to celebrate my husband I was pretty well. On Monday I went to my office.

And today (1 week and 1 day after) I´m very very very well, my frequency is maybe 1 every 1 hour and at night I have to go to the wc maybe 3 times. I don´t have urgency and I´m totally pain free!!!

I´m not taking neurontin now (because I don´t feel pain in my nerve) and I´m only taking dayly Atarax and TENS only 30 minutes at night

Bye!!!!!!!!!!!!!!

[CinSin]

I am so happy that you are doing so much better!

[Flore]

And you????

[CinSin]

I am doing good.

[Indy]

Hi ladies. I'm glad you are doing well.

I am 3 months into this now. I have had some incredible days but still get flares like this week. I think it's related to the IBS. I will never get 300 units again. I still have retention, but only during the flares.

[RedRose]

Flore,

I am so happy you are doing well. I assume you would recommend botox as that is what I am debating getting done. I had the hydro several years ago and it helped a lot. The doctor now wants to do botox.

Rose

[Flore]

Rose: I recomend Botox, thanks to it I can continue withe my life!!! and before Botox treatment I began with the hydrodistention. So IN MY CASE both are the best treatment. Hydro helps with my IC and Botox with my PFD and vulvodynia. The only "side effect" of these treatments are the cost and that I have to be 3 or 4 times a year in the hospital, but I don´t care!!!

Indy!! Three months????? wow!! very soon!!!. I hope very very soon you´ll be perfect!!, and I agree with you, 300 units are so much, and for the next time, tell to your dr about the option to put a very low doses (??) in the bladder and more in your sphincter and pelvic floor

Cindy!! I´m so happy for you!!, are you going to stay in Arlington??

[CinSin]

Flore,

No I am not going to Arlington. I need to stay here and prepare for the ICU patient conference in October.

Cindy

[Flore]

Don´t forget to send me details because I want to looking for my sponsorhip

[CinSin]

Flore,

The Houston Patient Forum is October 22, 2005 at the Hotel Derek. We are so excited that Dr. Robert Moldwin is going to be our keynote speaker. The details are at http://www.icutexas.com/Patient_Conference.html.

Cindy