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Does anyone suffer from Trigonitis or inflammation of the bladder?

By October 30, 2008 - 3:01pm
 
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If anyone suffers from this, PLEASE contact me!! I've been having bladder and urinary pain for months. My urologist doesn't think I have Interstitial Cystitis, but I do have Trigonitis. I can't find any information on this. PLEASE HELP!!

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EmpowHER Guest
Anonymous

I have trigonitis but I am only 16 which is almost unheard of to have trigonitis this young. I have constant bladder infections that sometimes put me in hospital and I am in constant pain when I pee especially after sex. It I should a horrible condition and next infection I get means that I have to get the bacteria burnt and from past experience it's going to kill.

September 28, 2016 - 11:07pm

My heart goes out to all fellow sufferers of this horrible affliction! I was diagnosed in July, 2015 and although I had symptoms on and off for several years, I didn't have my cystoscopy done until then. IC was ruled out at the same time but I do follow the IC diet because anything, and I mean ANYTHING remotely acidic, causes a major flare-up. For example, I avoid most citrus fruits, coffee, tea, alcohol, some meats and anything with high acidity. Although I have some discomfort daily, this diet helps keep the major flare-ups at bay. I am only 35 and this is by far one of the most depressing and debilitating things I have gone through in my life! It is so hard to live day to day, not knowing how you will feel and not having the simple luxury of eating and drinking like a normal person! Tell me how a normal functioning person is supposed to get through the workday without a cup of coffee? That is the hardest for me. Or not being able to enjoy a glass of wine to relax at night or on a weekend. I've tried it all: antibiotics, dilation on several occasions and food avoidance; however, there may be HOPE here and something to look forward to with these following sentences. After much research, my husband and I stumbled upon an article online about a study done in Texas on a group of women with Trigonitis. It is a procedure called FULGURATION. http://www.sciencedirect.com/science/article/pii/S1879522615004212
I was desperate to have anything done for a cure, so I presented this study to my Urologist and he said he was able to do the procedure for me. It was exactly 5 weeks today that I had this done. Since it takes up to 12 weeks to recover, I will be having my follow-up cystoscopy in early April to determine if it worked. Fingers crossed and to all of you who pray, please do! Maybe this is our answer!!! I have had some discomfort during this healing process but no more than usual, with only one flare-up but that was while I was shedding some of the scabbing in the bladder. It is too early to tell at this point if it worked, but I will keep you informed. Good luck to all and God bless!
If anyone needs more information, feel free to email me at clutzick@keystone.edu

February 8, 2016 - 6:56pm

Sorry, I accidentally posted that first post twice!

February 9, 2016 - 6:11am
EmpowHER Guest
Anonymous

I have trigonitis. Am in nearly constant pain, not just when or after I pee. Been on antibiotics for 3 months. The only thing that seems to help are Azo cranberry pills. I also try to avoid pop, alcohol, and orgasms.

May 11, 2015 - 6:23am
EmpowHER Guest
Anonymous

Hello to all :)

I use toviaz 8mgs to reduce the spasms in my bladder. It works for me as soon as my symptoms start I usually take it for a week or two. I have a really bad reaction to mustard or hot salsa. The toviaz helps the sore to heal.

I hope you all find a remedy that works for you.

August 4, 2014 - 8:31pm
EmpowHER Guest
Anonymous

Indeed, from all the comments here, this is a horrible condition, as I was diagnosed with trigonitis in April 2014. After months of painful bladder procedures/bladder medications that didn't work, and severe, excruciating bladder pain as well as urgency and frequency (going 60 times a day to the bathroom being up all night in agonizing pain), I certainly can validate everyone's frustrations here. The disabling pain that wouldn't go away made me absolutely miserable, and wreaked havoc on my job, my marriage, and my life. My husband wasn't quite able to understand why I couldn't be intimate anymore; but I knew that if I was intimate, I would pay for it for weeks. However, I have learned that instead of following the masses and giving in to to the pain, which made it undeniably worse, I chose to be empowered and do something proactive about my situation. When I received the diagnosis, I decided to research the condition to better understand its causes, the treatment options and the ways in which I could help myself. After spending a lot of time doing so, I learned that my condition was likely caused by a back fracture I sustained last year - in essence, the nerves that connect to the lumbar and sacral spine (the areas of trouble) innervate the bladder. The trigone is the area where the nerve endings bundle and populate. This is exactly why I was struggling - nerve misfires from a broken spinal vertebrae. Anyone who has trigonitis, I suggest you have a chiropractor examine your back to see whether this is a root cause of your problem. I also realized that my diet was not making the situation any better. For those that have trigonitis or any other type of bladder condition, your food choices often dictate whether you will have a good or bad day. I soon became educated on which foods to avoid, namely coffee, chocolate, spices, citrus fruits, cranberry juice, citric acid, vinegar based salad dressings, and a number of other common bladder offenders. I recommend you go to google and search the "IC Diet," which can help you to pinpoint problem foods. A naturopathic doctor who I was seeing ran a blood test as well, to see whether I had food allergies that were contributing to the inflammation in the bladder. Lo and behold, I have a severe allergy to chicken, eggs and dairy products, things I ate regularly before all this started. The blood test examines foods that lead to inflammatory responses in the body - I highly recommend you check this out for yourselves and see whether you may have a similar issue. I also stumbled upon a pelvic floor physical therapist, who found that my pelvic floor was also, due to the back fracture, not functioning correctly, which led to a lot of the pain and agony in the pelvis and bladder. Trust me, there is no quick fix for this problem. But what I do know is that PT, a change in diet, and a simple blood test got to the root causes of my problem. I had gotten to the point where it was either suicide or take matters into my own hands and learn how I could get better. I fought hard and have found some relief. While it is not a perfect science, I recommend for all of you to stop focusing on the negative, which is hard as I know, and start looking at things to help yourself. If anyone has questions, please post and I will answer them. I am no expert, but I do have some helpful suggestions.

July 31, 2014 - 9:25am
EmpowHER Guest
Anonymous (reply to Anonymous)

Thank you for your story!
I was told i have trig last yr after a few samples came bk with
No positive test for UTI.... but still had all the signs and symptoms
I look forward to looking up the IC DIET
Thank you

April 15, 2015 - 6:06am
EmpowHER Guest
Anonymous

I've been reading the past comments and I will once more say as I have been dealing with this problem on and off for years that the only thing that helps trigonitis is cystistat (look it up on the internet). Forget antibiotics, forget holistic treatments etc. They don't work. Trigonitis is a sore in the bladder, and the only way that sore will go away is if your bladder membrane is cured, as it affects the wall membrane. Once your bladder membrane has been damaged, whatever happens to you in front (STD's, yeast infections etc) will trigger the pain in the trigone area of the bladder, also women with a UTI problem damage the bladder wall. So antibiotics unless you have a bacteria, can not cure trigonitis, unless it's being caused by a bacteria, so you take antibiotics to cure the bacteria, and then do the cystistat therapies to cure the sore! Most urologists have no clue what they are talking about. Cystistat is a cure for IC and trigonitis. I don't think it has to do with hormones, but with bacteria that has affected the vagina and the bladder over time. They just made that particular spot more sensitive. Most women with this problem have been diagnosed with chlamydia or HPV which were the culprits for their suffering where the bladder was concerned. So girls, get a good pap smear see if you have any bacteria roaming around down there, a urine test, and then suggest cystistat to your urologist.

June 18, 2014 - 2:19am

Hello
I have been diagnosed to have trigonitis and uretritis.
As soon as I have sexual intercourse I have terrible pain in my body even in my esophagus and I have also been diagnosed to have helicobacter virus in the stomach. I am feeling terrible. Please can someome help me. For two years nearly everyday I used medicines. It was fine in the end however as soon as I had sexual intercourse with my partner all started again. Please advise

June 14, 2014 - 2:26pm

I got interstitial cystitis in 1992; I am now in remission but not before it destroyed my life. I have a website which I hope can help those suffering

www.sunloversspot.com

May 30, 2013 - 1:04pm
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