Botox

[dl_54]

Scheduled for October, in meantime taking 2 antihistimines, instillations, and methadose (which does nothing at all). I teach all day, then come straight home to hot bath, heating pads and cry. I have no life, but beautiful grown children, husband and grandchildren who want me normal again. I can't participate in normal family functions due to pain. Until 5 years ago, I would run 5-10 miles a day on treadmill...stomach flatter then when I was 16 weighing in at 100lbs, now weight is same but out of shape and depressed. I see one of NC finest docotors but can't get him to understand that 3 methadose a day doesn't even take the edge off, just makes me sleepy. Any suggestions for pain control?

[dl_54]

Thank You to the many that had pm to me but couldn't get on with password, another nightmare, so starting over. To the person who asked me about botox....My doctor suggested it, in fact off of phone with him last night..he is so caring but yet stern...told him of pain....I am a functioning person, that is all..he said NO, I am not even functioning. His solution is if pain continues to be at a level 8 to let him give me a 50mg. pain patch, but I'm afraid due to my job, I teach. I am already sleepy all day from the methadose of 10mg 3-4 times a day, but so sleepy, crying the minute I get in car...I've gone form a happy Teacher of Year Status to putting on game face and withdrawling from life. I am praying that when he does the botox, it will offer enough relief. I can't even consider disability, I have just put the last of 5 children through college....with my husband..we paid for it all and no loans, but now instead of enjoying life, I am falling apart and he is of no help. If it were cancer , he would support me I'm sure but this can't be seen nor is it popular. I feel alone, depressed and not sucicidal but if God wanted my time to be up, I'd go willingly.......is this normal? I am 52, look 35, always taken care of self but can't even do 10 min on treadmill, used to do 11min miles......5-10 a day.......again, I am sorry for not responding but just now got a password to get back on this site....it has been a comical trial of errors....as if there were an outside force not wanting me to communicate with others!! As I said I have a wonderful doctor, FINALLY, even though I do not agree with all his methods. I just have to put faith in God and trust in him. What I want to know is botox the answer I'm looking for? What do others use for pain management and still hold down jobs...I am a teacher, I have to be very careful! Again, Thanks to all who responded.

[Rita Rake]

I haven't heard much about botox. I thought it was still in the trial phase. I don't see how it could make matters worse. :angel:

I'm so sorry to hear about your plight. I also took very good care of myself and now have daily pain. For my Pain I am on moriphine for 12 hour pills. I hope the botox works. Please let us all know the results.

RR

[kimberlyJB]

I can't believe that you all teach and deal with this level of pain. I am just in awe. I just finished a master's degree and just can't imagine at this point trying to teach. I have decided to stay at my social services job until things calm down.
:bow:
Right now for pain, I have an assortment of things. Tramadol is somethign that i can take 1/2 of and not get too sleepy during the day. I also have something from the dentist recently, HC-profen, that seems help with pain without making me sleepy. I am going to ask my pain doc about it soon. I can try to get the full name for you too.

I would also recommend taking the strong stuff at night and trying to make is on the smallest dose possible during the morning / day hours. Hydrocodone is the only thing that really gets to my urethral pain but I can only take this at night because of the drowsy factor.

I hope some of this helps. I am so sorry that you are going through this.

[Texas Baby]

dl 54, I am so so sorry for you. I know how hard it is to try to work through the pain and no be able to take some thing that doesn't do anything but make you sleepy and the pain is stiil there.:bonk: . Recently my URo prescribed valuim suppositories for spasms. We agreed to give it a test trial so far on day 20 I have notice a 50% differece in the way I feel IC wise. It Might be something you want to talk to your doc about. I got the idea from the lecture Dr. Brookoff gave here. anyway these doctors seminars have been most hekpful. I hope you get some relife soon. Another thing mighthelp is to go see a pain management doctor. I have been seen on for my back , I have a herniated disc. It has helped tremendously. I will pray for you :pray:
Hugs, Eva :) :)

[Angeles]

I really hopes Botox works for you. I knwo it works well for some people. Good luck and let us know how it goes.

[redfaced]

Thank You to the many that had pm to me but couldn't get on with password, another nightmare, so starting over. To the person who asked me about botox....My doctor suggested it, in fact off of phone with him last night..he is so caring but yet stern...told him of pain....I am a functioning person, that is all..he said NO, I am not even functioning. His solution is if pain continues to be at a level 8 to let him give me a 50mg. pain patch, but I'm afraid due to my job, I teach. I am already sleepy all day from the methadose of 10mg 3-4 times a day, but so sleepy, crying the minute I get in car...I've gone form a happy Teacher of Year Status to putting on game face and withdrawling from life. I am praying that when he does the botox, it will offer enough relief. I can't even consider disability, I have just put the last of 5 children through college....with my husband..we paid for it all and no loans, but now instead of enjoying life, I am falling apart and he is of no help. If it were cancer , he would support me I'm sure but this can't be seen nor is it popular. I feel alone, depressed and not sucicidal but if God wanted my time to be up, I'd go willingly.......is this normal? I am 52, look 35, always taken care of self but can't even do 10 min on treadmill, used to do 11min miles......5-10 a day.......again, I am sorry for not responding but just now got a password to get back on this site....it has been a comical trial of errors....as if there were an outside force not wanting me to communicate with others!! As I said I have a wonderful doctor, FINALLY, even though I do not agree with all his methods. I just have to put faith in God and trust in him. What I want to know is botox the answer I'm looking for? What do others use for pain management and still hold down jobs...I am a teacher, I have to be very careful! Again, Thanks to all who responded.



dl-54, I can really relate. I'm 45, taught kindergarten for years, have three teenagers, one in college, ran and worked-out daily, and basically never had any health problems. I've always taken good care of myself in the diet and exercise departments. Then IC hit a month ago, and I'm already feeling much older and like a hermit. I have a mild case, but am praying it won't get any worse. I can't imagine being in the kind of pain that so many on here experience daily, like yourself. I am glad that I'm not teaching this year, because I often wonder how I would have managed it! I am on sabbatical this year and was planning on going back next year, but we'll have to see. I hope that this illness doesn't cause me to become a homebody forever! But the one thing that seems to be so upsetting about IC is that it is unpredictable. I'm very anxious to hear if Botox works for you. It's the one thing that sounds do-able to me, if I ever get bad enough that I need something directly injected down there.

I hope you are able to get back on that treadmill soon and at least feel like you can do some of your normal things. I know when I can't workout, I do get depressed. When it is part of your life for so long and then you can't do it anymore, it is really hard to handle. I have found that the elliptical trainer works better for me when I don't feel well, and then I do the recumbant bike. Sometimes the treadmill is too jarring on the bladder.

Hugs,

Sadie

[ICLori]

dl 54, (((HUGS))) What you are feeling is COMPLETELY normal for this disease.

Researchers have determined that the pain felt by IC patients can be as severe as that of someone dying of cancer, and our quality of life when left in uncontrolled pain can be lower than someone on dialysis.

That's a pretty bad disease. But people don't understand how much pain we are in. They see us and we "don't look sick" so it's hard for them to understand. And if they have never experienced bladder pain themselves, they absolutely have no comprehension.

I hope so much that the botox will work to relief your pain and that you'll have your old life back again.

Blessings,
Lori

[vm]

Good luck! I hope botox ends up being the missing link for you. :kissing:

[Texas Baby]

dl 54,:hi:
I can also relate to not being able to exercise. I have gained weight even though I follow a pretty strict IC diet. I feel better for a few days , then at the very least I try to walk a few miles . About 3 days later it will come back to bite me in the butt. I have a severe case. I don't presume to know how bad yours is but my IC really started to show up when I was sub teaching. I ended up quitting. Good luck to you! HUgs and lots of them
eva:pray:

[dly54]

trouble with password but think I have it now! Dr. Evans did botox on Friday the 13th, the difference in pictures alone are a miracle, after botox NO signs of red lines it is NORMAL looking, other then pressure I am 90% better. I did not get to talk to him my husband did who has given me 0 support so I want to talk to him myself about followup expectations. For 20 years I have chased my tail,doctor shopping, last two years I had no life, after DMSO and all the treatments no relief and still held down my teaching job just long enough for me to get home to hot bath and heating pads. Will keep posting progress but for now it is a miracle!

[Texas Baby]

dly,I'm so glad the botox is working for you. I have been getting chloropactin treatments myself. I have had 2 so far. My Uro says that my bladder looks better than it has for a long time , and I have a severe case. Botox was going to be my next suggestion to my Uro.
Good luck to you! I hope you continue to feel better!:)
Hugs & God Bless
Eva

[walnut]

I have tried about every medication for I.C. baring experimental ones. Nothing seems to work and I get way too many side effects. I had depression before this even started so functioning is a joke.

I am considering Botox. I really cannot see the down side besides the cost.

First questions.

My insurance already denied it. Anyone have any good ideas about how to go about the appeal. In other words things I might want to include?

Second. I have not read anything about anyone taking concurrent medications while they are doing the Botox. A big reason I want to do it is to get off all these medications. Does anyone have any idea about whether this is reasonable to assume?

Thanks,

walnut

[mbakker3]

I am scheduled to have botox injectins in all of my pelvic muscles in two weeks which will be performed in the operating room. I am very nervous but I am hoping the outcome will bring some relief ! I have been going weekly for homeopathic injections for almost a year and pelvic physical therapy but the pain and spasms are just not stopping and the meds and weekly instillations do not help enough. I am trying to be positive but do not like the idea of the unknown ! But running out of options and it sounds like others have had some success. The docors who are wonderful are trying to improve my quality of life so I can enjoy my boys and not have every minute of the day be such a effort. Even short term relief would make me happy right now. I will go through with it and at least I will be asleep because the office injections are very painful. I try to prepare myself each week, but it doesn't work, they are over quickly but my gosh they are not fun at all !!

[walnut]

Just wanted to give you well wishes. Let us know how it goes. I have heard mostly good stuff about Botox. No matter what it is temporary.

[mela414]

Hi Mbakker,
I see that you are from NJ. I live in the Freehold area and also have severe IC and terrible PFD. Do you see a local dr? MY PFD has been really acting up lately and needs attention. I am thinking about Botox as the PT made me worse when I tried it a few years ago. I haven't found anyone in the area that really knows how to treat PFD. I went to one lady, who had a good reputation but it was a heck of a ride for me down the Jersey Shore. I stuck with it for a while but the pain was too much too handle. I also had internal trigger point injections by my dr who is in Philadephis but that was torturous! I was in agony for days afterwards. Not sure what to do anymore but I know I definately NEED to do something. I hope the Botox works for you. Please keep us posted. If you have any info that you can share with me about PFD I would appreciate it.
Thanks,

[laurafitz20]

I have had botox injections & I think they have really helped me. I actually am feeling quite 'normal'. I did have some problems actually being able to go the bathroom after the procedure, but nothing major. I had the procedure about a month ago & am feeling really good. Sitting right now I don't feel like I have to go to the bathroom which never would have been the case before the botox. I am going to start seeing my physical therapist again because my dr thinks now would be a good time work on the muscles in my pelvic floor to make sure they stay relaxed. If anyone has any questions on Botox please feel free to contact me. Good luck to everyone!!

[ICEL]

Laura,

I am glad you are feeling better. How many cc's did your Dr. inject, what areas and how many injections?
Thanks

[deborah bush]

Hi!

I can not believe that your doctor gave you botox once a month!! I do botox and I have it 6 months but this last time I had it 8 months. Good Luck to the other girl and I hope it works for you!!! Deborah Bush:hi: :hi:

[mbakker3]

Well I am a week later from the pelvic botox injections and the procedure went well,and I can't wait to go to my follow-up appointment because I have bad burning and piercing pain which may be normal for the first week due to stirring things up. I will see on Friday. I hope I made the right decision because so far I am not too sure. I have alot of pressure but I may be on my feet too much.

[LBUSH49]

Hello you don't hear much from men , My name is Larry I had a lot of problems with my Bladder ,first a supra pubic tube , then the mitro , still no luck as my Bladder kept having spasms so I tried 4 different medications , then came the BOTOX I had 15 injections still no luck , I ended up having a BLADDER BYPASS WITH ILEAL LOOP ON MY RIGHT SIDE OF ABDOMEN now they never removed my BLADDER just by passed it this was last may2006 ,it all stems from having 7 back operations causing me to have a NUEROGENIC BLADDER , now I wear a 2 piece bag system made by ConvaTec , these supplies are very expensive , each time I take a shower it costs about $35 in supplies ,this can be hooked up to a leg bag , or even a foley , that is what I use when I'm staying in at my home , it just makes it easier than emptying it so often , I was hurt at work May 10 , 1985 since that date I've had 23 operations , and take 16 medications a day , if anyone wants to email me they are welcome to at LBUSH47@YAHOO.COM my name is Larry Bush I'm 50 years old and will have to live like this from now until the Good LORD takes me again feel free to email me . I thought it was kinda of funny seeing someone with the same last name ,but you don't see many males . good luck to all and may GOD WATCH OVER ALL

[JPS]

Male-36 Yrs. Old. Have Severe Ic For 11 Years. Nothing Helped........except Botox. It's Giving Me 50% Plus Relief. Still Not Where I Wanna Be But Inching My Way Closer. For Those With Severe Ic, It's Worth A Shot.

[mela414]

Hi JPS,
What are your symptoms with severe IC and how did the Botox help? Are you sensitieve to foods and beverages? Just tryng to figureout if it's right for me. I had an appt for jan 4th but cancelled it because I wasn't sure.
Did they inject your bladder and pelvic floor muscles too?

[Sheryle]

I have been denied Botox Injection Therapy. Can you please let me know how you accomplished approval through Insurance?

Sheryle

[JPS]

mel- no, i did not have my pelvic floor muscles injected. i'm a male so our anatomy is a bit different. for me, i have horrible urethral pain. every doctor i've been to has told me they have never seen glomerulations in the urethra like i have- lucky me! plus, i'm a relatively young man that got ic at 26. anyway, i've tried/done everything. been on so much pain medicine for the last 10 years i'm surprised i'm still alive. i live in houston and the local support group leader, cindy, talked me into trying it. for me, it is honestly the only thing that has helped significantly. my doc injected my urethra and that's it. he did'nt even put any in my bladder. first, he did a thorough urodynamics test to determine exactly where i was feeling the pain. i knew where it was but he needed to confirm it for himself. once we determined location, we did the injections. it was actually fairly benign. he did the injections rectally b/c it's easy to get to the urinary tract through the rectal wall. it's quite thin(only about 5 layers of cells) and right next to the bladder, etc. it took all of 5 minutes. so, for all the women(and men) out there that have suffered interminably, i think it's worth a shot. my pain is down at least 50%, maybe a bit more. and nothing else helped me- elmiron, atarax, elavil, bcg, dmso, heparin, etc. etc. matter of fact- i believe alot of the meds they had me on 10 years ago are what made the ic progress so rapidly and even spread into my urethra. i'm glad i gave it a shot. i'm doing another treatment april 1st. i did my first one nov. 29th and by the second week i was feeling incredible relief.

[JPS]

sheryl- i payed for the botox myself. the doctor that does it here in houston at baylor is out of network for me. go figure............so, i coughed up the $1,800.00 for the first treatment. i am working on at least getting the botox itself paid for next time. my doctor called in the rx and i picked it up at the pharmacy. my argument is that it's not for cosmetic purposes. if they deny me i'll keep appealing.

[LBUSH49]

The DR. told me I had IC , but come to find out I had a Neurogenic Bladder that caused me all kinds of problems now I have to wear a 2 piece Bag to catch my URINE after 4 operations I've been to 5 different Urologist in the past 2 years . LBUSH

[mela414]

Hey JPS,
I'm glad that you found some relief. If the Botox works for you..great! I have a lot of pettechial bleeding inside my bladder. When they did the hydro they told me I had severe IC. duh....no kidding! my bladder is screaming all the time. As for the PFD>>>>I know we are different but.....you never know where the drs want to inject or how they will get there. I remember when I took my Yorkie to the vet, they injected her bladder directly thorugh her pelvic area!!! OUCH! I would have never thought that!
I too have not had any good results with any of the meds for one reason or another. I am really affected by diet though and have to watch everything I eat or drink. Having said that I still have pain daily.
Isn't it a shame though, that we pay so much for insurance and can't even get the medical attention that we need.
good luck with your next injection and I pray that it continues to give you the relief that you need.:angel:

[Myca]

My main problem right now is that I have to go all the time at night and I am not getting any sleep because of it. My doctor put me on Ambien but I don't want to be dependent on that. I had a hydro in August and then another one in December. They usually help but recently haven't done much for me so I figured this might be my last resort because I DO NOT want to try Interstim and the instillations do nothing for me.

So I wanted to do the Botox because in theory, it sounds like it would work great. But I'm scared! My other doctor, not the one who is going to do it, said that sometimes they over do it and then you can't pee at all and have to catheterize yourself! That doesn't sound much better. SO I wanted to get on here and see if anyone had any success with it.