botox injections for IC bladder pain

[chhhb]

I'm scheduled to have botox injections in my bladder on 9/19 and am wondering if anyone has has this done and if you experienced improvement. I've had bladder instills, taken various mediations, and even tried nerve block injections and physical therapy. None have had lasting results. My doctor thinks most of the pain I'm experiencing is due to muscle tension and spasms in the bladder which botox interrupts for six months or so. I also have pelvic and vaginal fullness and pain as well now.

Before this year, my IC was under control and I was doing well for 12 years on Elmiron, and amitriptilene. I had a terrible flare in January I think due to having my HRT reduced too quickly. Since then I've had so much pain and additional symptoms I've never had before such as the vaginal fullness and pain along with the pelvic/bladder pain, urgency and frequency.

This has been a terrible experience yet a learning experience. I'm trying to keep hopeful that something will eventually get me back to where I was before. I pray the botox treatment will do it.

If anyone has had experience with this, I would appreciate your input.

Thanks!

[arkitekton]

I wish I could be helpful, but I'm due to get Botox'ed September 21st 2011 for the first time and don't know what to expect. Nor is my urologist capable of explaining what he hopes to accomplish.

My symptoms are high frequency (30x a day, down from 60x), tolerable bladder burning (down from moderate to excruciating pain), urgency that returns ten minutes after voiding and becomes unpleasant to awful within an hour. The pressure that accompanies urgency locates itself primarily in a golfball sized area just beneath the skin of my perineum.

I'm not asking you to diagnose me , but does this sound like what you've been led to expect Botox will help with?

Good luck and best wishes to you!

[chhhb]

Botox injection treatment

Hi

I wish you the best too. I know the kind of pain you are talking about because that's how my IC was when I was first diagnosed and before Elmiron was given and starting working for me years ago. My symptoms are similare but somewhat different from yours. It's mainly some urgency and frequency (not as bad as yours) and daily pain in the lower abdominal region as well as pelvic floor pain. The doctor believes some of my pain comes from bladder muscle spasms, pelvic floor muscle tension and nerve damage. The botox injections in the bladder will mainly address the bladder muscle issues. So, I'll see how much of my pain is coming from there once I get the injection. She also said that the muscles and nerves talk to each other and get out of control with misfiring pain signals, etc., and that sometimes when they can get one of those to calm down the other issues will get better too. I've been receiving weekly nerve block injections near the pudendal nerve for six weeks and unfortunately I only got temporary relief for a few days and then the pain would return. So, with the botox treatment, the muscles will be weakened and somewhat paralyzed so they can't spasm. I pray this works because I've had so many different kinds of treatment that this is a last resort. I'll also continue receiving PT for the pelvic floor muscle tension.

I wish you the best too! The botox is supposed to last for six to nine months and if you're having that much urgency and frequency it's probably coming from your bladder and it should help you. I just trust that you are seeing a good doctor for this. They should be able to explain it clearly to you as well as what they do in the procedure. My doctor is the best. She is a research physician urogynecologist who has been involved in botox research studies at UCI over the last several years. I know she knows what she is doing. She explained that they inject the botox in 20 to 30 different places along the bladder wall. They do this in one treatment session. Also, a side effect is that you feel like you can't urinate but you can, its simply slower and more sluggish at first. Also, it takes one to two weeks for the botox to kick in before you start to notice a difference and hopefully a lessening of your pain and other symptoms.

I hope this helps. Sorry it was so long but am just trying to provide you with the information my doctor provided to me. This is something a highly skilled physician does who has had a lot of practice. Make sure your doctor is!

Good luck and let me know how it goes.

Cherie

[lnoble]

My daughter had Botox injections in her vaginal area a few weeks ago. She has terrible pelvic pain. She has retention rather than urgency. The Botox has helped with her pain. We will definitely do this again! She is still in pain, but can do a few things now. Unfortunately, she started having a new pain about 2 weeks ago. After several tests, they found that her gall bladder is functioning at only 10%. We meet with drs tomorrow to find out about the surgery. I wish you good luck with your injections!

[chhhb]

My daughter had Botox injections in her vaginal area a few weeks ago. She has terrible pelvic pain. She has retention rather than urgency. The Botox has helped with her pain. We will definitely do this again! She is still in pain, but can do a few things now. Unfortunately, she started having a new pain about 2 weeks ago. After several tests, they found that her gall bladder is functioning at only 10%. We meet with drs tomorrow to find out about the surgery. I wish you good luck with your injections!

Wishing your daughter the best, as well. Had to have my gallblader out a year and a half ago, and they did it through the laperascopic method where you only have three small incisions in your abdomen. The recovery is much easier than the open surgery. Hope she'll do well.

God bless and thanks for the encouragement.

Cherie

[arkitekton]

Cherie--thank you

Thank you for taking the time to be so thorough. I appreciate it very much.
I didn't realize you were addressing my post at the time.

Well, sorry to say the Botox hasn't helped at all. It actually made things worse for a while, and now I'm back to normal, which is to say not too good.

Still and all, my bladder is about as good as its been since all this started for me in 2006. In 2009 I started developing the symptoms of fibromyalgia and its only gotten worse since then. It used to disappear for months at a time. Now it's constant. I'm starting to feel that, no matter what, things are only going to get worse. If one thing heals, another, worse pain, will start up. On top of this, my sister has decided to take advantage of my health problems and the wording of my parents' trust to steal the majority of my share of my parents' estate.

I don't complain a lot around here, but I'm at the end of my rope.
This can't be the life I was meant to have.

Hi

I wish you the best too. I know the kind of pain you are talking about because that's how my IC was when I was first diagnosed and before Elmiron was given and starting working for me years ago. My symptoms are similare but somewhat different from yours. It's mainly some urgency and frequency (not as bad as yours) and daily pain in the lower abdominal region as well as pelvic floor pain. The doctor believes some of my pain comes from bladder muscle spasms, pelvic floor muscle tension and nerve damage. The botox injections in the bladder will mainly address the bladder muscle issues. So, I'll see how much of my pain is coming from there once I get the injection. She also said that the muscles and nerves talk to each other and get out of control with misfiring pain signals, etc., and that sometimes when they can get one of those to calm down the other issues will get better too. I've been receiving weekly nerve block injections near the pudendal nerve for six weeks and unfortunately I only got temporary relief for a few days and then the pain would return. So, with the botox treatment, the muscles will be weakened and somewhat paralyzed so they can't spasm. I pray this works because I've had so many different kinds of treatment that this is a last resort. I'll also continue receiving PT for the pelvic floor muscle tension.

I wish you the best too! The botox is supposed to last for six to nine months and if you're having that much urgency and frequency it's probably coming from your bladder and it should help you. I just trust that you are seeing a good doctor for this. They should be able to explain it clearly to you as well as what they do in the procedure. My doctor is the best. She is a research physician urogynecologist who has been involved in botox research studies at UCI over the last several years. I know she knows what she is doing. She explained that they inject the botox in 20 to 30 different places along the bladder wall. They do this in one treatment session. Also, a side effect is that you feel like you can't urinate but you can, its simply slower and more sluggish at first. Also, it takes one to two weeks for the botox to kick in before you start to notice a difference and hopefully a lessening of your pain and other symptoms.

I hope this helps. Sorry it was so long but am just trying to provide you with the information my doctor provided to me. This is something a highly skilled physician does who has had a lot of practice. Make sure your doctor is!

Good luck and let me know how it goes.

Cherie