Has anyone had Botox to treat pain only?

[Aza]

I have had moderate IC for 18 months, and i have learned to control most of the symptoms of frequency, urgency and nocturia through diet and distraction, and i wear heat pads on my stomach at work every day. I still have flares on average 2 days a week where all my symptoms are increased, and i still have difficulty travelling, but on the whole, i can live my life pretty well. Unfortunately i have had no luck finding successful pain control. I had a second cystoscopy 6 months ago and my urologist said i groaned and tensed in pain even under general anaesthetic when he instilled water into my bladder. The typical glomulations were also florrid in my bladder walls.

My pain comes and goes in waves of intensity, but i am in constant pain every day and cannot even lie down to sleep without pain medication. After trying many different medications, i have been on OxyContin for the last 6 months, which really helps on my good days, eases the pain on my moderate days, and does nothing on my very bad days (except if i chew enough of them they eventually knock me out. My doctor has said i can take up to 8 at a time if i need and he is aware that even this amount doesnt help my pain during bad flares)

I am not allowed to take pain medication when i am working at my current job. Interstim therepy is absolutely out of the question because of the nature of my work. My urologist wants to try Botox to see if it will help my pain.

I have looked on the internet but can find very little information. Most people i have talked to have had it done primarily for spasms, frequency and urgency- some have had pain relief as a knock on effect. I want to know if anybody has had Botox for pain management only? I don't need help managing my frequency etc, because the IC diet has helped with these things. My urologist is really nice and has explained the pros and cons, but he admits that the IC patients he currently treats struggle primarily with frequency/urgency, and the only patients he has with my pain levels are cancer patients. I know lots of other ICers on here have pain worse than mine, so i was wondering if any of you have tried Botox for pain relief and if it has helped at all? Thanks for any advice you can give, hugs and healing thoughts to all

[HopeWithin]

Hi there,
I just wanted to share my experience with Botox. I've had it done twice this year & I have to say that's helped me more than any of the billion other treatments I've tried. Let's just say I'm way past the initial treatments & that is why I chose the experimental ones because I was so desperate for relief from 24/7 constant gnawing pain to the point where I couldn't hardly get out of bed.I could deal with the frequency more than the pain so I did this primarily for pain relief. I'm not completely pain free but it's helped me a lot. With Botox you have to understand that there is side effects & that depends on how much the dr uses, I personally chose to have my pelvic floor muscles & bladder injected. From my research I have read that you really shouldn't have more than 300 units of Botox injected, in other words less is more. The procedure itself is not a long one & they usually do it in less than an hour while your under anesthesia, it's painful for sure to wake up from & definitely requires some extra down time for a few days. I had more done in my pelvic floor than the bladder each time. If they use too much in your bladder it can cause bad retention to the point where you are self cathing often but that subsides, it really depends on your body & how you react. I had less side effects the first time because less was used, it worked for about 3 months & then wore off. So the second round I chose to have more injected because I wanted a longer lasting effect... Well for 2 months I was miserable because I could barely void on my own & self cathed mostly. But after my body adjusted I noticed more relief than the first round. Dr's who did this treatment do say the more you do Botox the longer it lasts each time. I was told it specifically deadens the nerves where you have some of the pain in your bladder & they inject it. I would also tell you to beware about having the "trigone" area injected though because that is more apt to cause serious retention issues.

[Linda May]

Botox

When I was in the hospital to find out whether or not I had IC, there was this lady in the next bed getting ready for a round of botox. She said that she had to have it done every 6 months, she can feel the symtoms coming on after about 6 months her back would start to hurt. She said the botox did wonders for her but every icer is different. I am currently taking DMSO treatments which so far are helping me. I wish you alot of luck pray for cure soon.

[Aza]

Thank you so much for your reply HopeWithin
This is exactly the kind of information i needed and i'm really grateful for you taking the time to share the specifics with me. I'm so pleased that it's given you some pain relief and i really hope it might do the same for me. I am so tired of waking in pain every morning and constantly worrying over how many pain pills ive taken each day, and how many i have left- i feel as though the last year of my life has revolved around pain medication.

If you don't mind me asking you a couple more questions- is the botox something you plan to continue as your ongoing IC treatment? Are you still taking any other medication for IC?

[Aza]

Thank you Linda May- that's really positive to hear You are right in that we're all so different- that's why i find this forum such a god-send, no matter what you can always find others on here that understand what you're going through. It's really encouraging to hear when other people find success with different treatments- it reminds me never to give up hope <3