Chronic cystitis and botox

Mom2Dogs · ‎03-09-2010

I have a friend suffering from cystitis...she has to have botox shots into her bladder, this has been done several times....the 'illness' came out of nowhere.

After seeing several different doctors a urologist diagonsed her...he told her that her case is the worst he has ever seen.

There is no known cause for this and supposedly she will have to have these shots for the rest of her life...unless the symptoms disappear, which can happen.

I told her I would pose the question here to see if anyone else has this diagnosis and if you found any relief via diet, medication, etc...thanks.

Trinity11 · ‎11-16-2014

@Mom2Dogs wrote:
I have a friend suffering from cystitis...she has to have botox shots into her bladder, this has been done several times....the 'illness' came out of nowhere.

After seeing several different doctors a urologist diagonsed her...he told her that her case is the worst he has ever seen.

There is no known cause for this and supposedly she will have to have these shots for the rest of her life...unless the symptoms disappear, which can happen.

I told her I would pose the question here to see if anyone else has this diagnosis and if you found any relief via diet, medication, etc...thanks.

Are you talking about interstitial cystitis or cystitis? There is a distinction so before I reply, I would just need clarification.

Mom2Dogs · ‎03-09-2010

@Trinity11 I would say it is interstitial cystitis....no infection...she took meds for several weeks thinking it was a UTI but there was not.

Trinity11 · ‎11-16-2014

@Mom2Dogs wrote:
@Trinity11 I would say it is interstitial cystitis....no infection...she took meds for several weeks thinking it was a UTI but there was not.

Thank you @Mom2Dogs . I have had interstitial cystitis since 1985. It was diagnosed with a cystoscopy under anethesia, which I was told is the "gold standard" for seeing into the bladder. I had the Hunner's ulcers that are indicative of a damaged, inflamed bladder. Before menopause, I was a lot worse but it continues to be an issue for me, even now. I have had numerous bladder instillations but they never worked for long. I try now to just cope because all the promises never really did that much. At Support Meetings that I used to attend, some people did get a Tens Unit but many had difficulty with it.

I was placed on Elmiron but eventually had to stop taking it due to side effects. Most of the time, I take Prelief when I drink any kind of acidic beverages. Diet did affect it. Tomatoes, coffee, strawberries and chocolate can start a "flare." My physician wrote a book on Interstitital Cystitis..I am not sure if it is still in print but it is the best book I have ever read about this illness. (Dr. Robert Moldwin)

As far as Botox, I have never been advised to use it. Everyone is different, though.

If your friend is newly diagnosed, she should think about some Support. The Interstitial Cystitis Association has a wealth of information about how to cope. It is invaluable to anyone just learning about treatments.

I wish your friend well.... She is lucky to have you as her friend

Mom2Dogs · ‎03-09-2010

@Trinity11 , so sorry about the difficulties you have faced. Your symptoms sound like hers. She also has to watch her diet...acidic foods, and her favorite, chocoate are on her list of 'no eating'....her sleep pattern has changed as she is up many times a night to use the bathroom. On top of it all she has a husband that has early parkinson's disease....so there is a lot on her plate.

I guess the botox shots are very painful...she does get a local to numb the area but it really does not do that great of a job and medicare will not pay for her to have the procedure done in a hopital, so she could be put out.

The issue appeared out of the blue and could disappear quickly as well, she is really uncomfortable, but I probably don't have to tell you that...thanks for responding and take care.

Trinity11 · ‎11-16-2014

@Mom2Dogs wrote:
@Trinity11 , so sorry about the difficulties you have faced. Your symptoms sound like hers. She also has to watch her diet...acidic foods, and her favorite, chocoate are on her list of 'no eating'....her sleep pattern has changed as she is up many times a night to use the bathroom. On top of it all she has a husband that has early parkinson's disease....so there is a lot on her plate.

I guess the botox shots are very painful...she does get a local to numb the area but it really does not do that great of a job and medicare will not pay for her to have the procedure done in a hopital, so she could be put out.

The issue appeared out of the blue and could disappear quickly as well, she is really uncomfortable, but I probably don't have to tell you that...thanks for responding and take care.

@Mom2Dogs...just make sure that she has had a cystoscopy with a board certified urologist . Some Primary Care doctors will "diagnose" without one and it could be a chronic infection with too few bacteria to show up on the culture. Sometimes the bladder can be "colonized" by a certain bacteria and it makes dealing with interstitial cystitis all the harder if she does have it.

Keep me posted...

colliemom4 · ‎09-08-2010

@Mom2Dogs I'm sorry about your friend. I have heard of getting botox for an overactive bladder but not for I C.

Mom2Dogs · ‎03-09-2010

@Trinity11 She is seeing a urologist, so I hope he has done the proper testing...I don't ask a lot of questions, but if she is open to it I will ask. I did ask about infection and she said there was no infection...she took antibiotics for weeks with no relief, and a nurse friend suggested she see the urologist, who diagnosed her. thanks.

charlygeorge · ‎06-11-2016

I am 55 and had chronic cystitis when I was in my early 30's. I now suffer from Sjogrens (Show- grins) disease which is an autoimmune disease. I believe chronic cystitis was the beginning of my journey with my present illness (cystitis being part of chronic inflammation) At the time, I had every test immaginable done on my bladder to rule out other causes. I did not have a bacterial infection, however, I was put on a low dose of the antibiotic Macrobid, 50mg per day. It took a couple of months until I felt better. To this day, I continue to get that "feeling" in my bladder from time to time but it passes. Many antibiotics have anti-inflammatory properies. Of course, no Botox back then.I would say do whatever treatment gives you relief. These things tend to get better with time and can suddenly disappear. Find the best possible Urologist or Urogynecologist even if it means traveling to the closet major city. I hope your friend feels better!

Snowpuppy · ‎03-09-2010

Totally agree to start with looking into bladder infection, first. My labs kept coming back with either "few" or 0 bacterial colonies but I was often doubled over in pain. A culture showed strep. Your tinkle should be fairly sterile.

I went from sulfa to macrobid. Several rounds but by then it had traveled to my kidneys so on to keflex. Fortunately, all inexpensive.

I say this because my PCP thought it was IC for months and dietary changes gave no relief.