topic Re: Chronic cystitis and botox in Wellness

Chronic cystitis and botox

Mom2Dogs — Fri, 14 Jun 2019 01:05:38 GMT

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.

Re: Chronic cystitis and botox

Trinity11 — Fri, 14 Jun 2019 01:15:40 GMT

@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.

Re: Chronic cystitis and botox

Mom2Dogs — Fri, 14 Jun 2019 01:19:26 GMT

@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.

Re: Chronic cystitis and botox

Trinity11 — Fri, 14 Jun 2019 01:35:09 GMT

@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

Re: Chronic cystitis and botox

Mom2Dogs — Fri, 14 Jun 2019 01:51:12 GMT

@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.

Re: Chronic cystitis and botox

Trinity11 — Fri, 14 Jun 2019 01:54:34 GMT

@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...

Re: Chronic cystitis and botox

colliemom4 — Fri, 14 Jun 2019 01:58:33 GMT

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

Re: Chronic cystitis and botox

Mom2Dogs — Fri, 14 Jun 2019 02:00:11 GMT

@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.

Re: Chronic cystitis and botox

charlygeorge — Fri, 14 Jun 2019 02:41:33 GMT

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!

Re: Chronic cystitis and botox

Snowpuppy — Fri, 14 Jun 2019 04:11:35 GMT

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.

Re: Chronic cystitis and botox

Suzeecat — Fri, 14 Jun 2019 15:22:13 GMT

My sister suffers from interstitial cystitis and is on disability from her nursing job because of it. It got so bad that she was at the point of just wanting her bladder removed, but decided to get a pain pump, which has been working, for the most part. A while ago she got very ill and thought it was the flu. After suffering terribly for a week, it was determined that her pain pump had stopped working and she was actually suffering withdrawal symptoms! Unfortunately, she has been resistant to modifying her diet and I cringe every time she pops open a Diet Coke . . .

I never heard of Botox for it and will ask my sister if she has, although after her pain pump withdrawal episode she might not be interested in trying anything else.

Re: Chronic cystitis and botox

chrystaltree — Fri, 14 Jun 2019 18:49:51 GMT

It's not chronic cystitis. If they do botox to the bladder, it's Interstial Cystitis which a different and more serious condition and NO, there are no food or supplements to cure the problem. The pain can be unbearable for some and there is no one size fits all treatment for the condition or for the pain. I know two women who have had this for many years. They have each gone through a vast number of tests, therapies, medications and procedures. They get some relief but it's temporary. One gets satisfactory relief pain relief from Botox injections, hypnosis and Claritin, which I think reduces bladder contractions. Diet soda? I don't recall my friend ever saying she can't drink soda but she does only drink spring water and green tea. I don't know the other woman nearly as well but I worked with her for years and I don't believe she restricted her diet in any way. She had various bladder surgeries over the years and some type of nerve implant. I don't know how successful that was.

Re: Chronic cystitis and botox

Mom2Dogs — Fri, 14 Jun 2019 20:16:49 GMT

@chrystaltree , yes the actual name was mentioned earlier in this thread....my friend is suffering quite a bit right now, she was diagnosed about 6 months ago.

She has not mentioned any other treatments, but when/if she brings it up I will ask about the nerve implant.

Re: Chronic cystitis and botox

grandma r — Fri, 14 Jun 2019 23:50:27 GMT

IC is a very debilitating disease. At this point, I have suffered with it for most of my life. Years ago doctors had no idea; some even discounted it and came up with other "reasons" for the symptoms.

Yes, it is now classified as an autoimmune disease. There is no cure!!! Yes, there are specific dietary constraints for IC. Anything acidic should be avoided!!! Tea, coffee, soda/pop, iced tea should all be avoided. Anything, including chocolate, that has caffeine should be avoided. That said, it doesn't always help!

There are various bladder instillations that can provide temporary relief. DMSO has been proven to help if instilled over a period of time. Once weekly for 6 weeks, once every other week for 6 weeks, etc. However, the side effects are not pleasant.

Some bladder wash instillations can give relief for short periods of time. Medicare doesn't cover all of them.

To properly diagnosis IC a urologist needs to perform a cystoscopy with hydrodistension of the bladder. That is done in the OR under anesthesia. Hunner's Ulcer is often found in conjunction with IC.

I wish the strength and support needed for your friend. Living with this disease is more than challenging. Having people around her who support her is important.