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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

Hey everyone,
I'm writing here with an update. I have previously stated that I'm thinking about having Cystistat treatment, but my doctor informed me about an alternative treatment.There's a new similar drug to Cystistat in the market, it's call Vessilen. It's accessible in Europe and is cheaper than Cystistat. I have been on this Vessilen treatment and I can say that it has helped a bit, not a lot, but I definitely feel better. I have not yet finished my treatment.
This treatment is pretty much the same as Cystistat. You have Vessilen instilled in your bladder once a week for 8 weeks straight and then you do follow up treatments for 6 months - 1 instillation per month. Later on you see if you need to continue doing it or not. It's not a pleasant feeling when during the procedure, but it's not as bad as I have imagined it would be. It's almost pain free (unlike cystoscopy). After the treatment you are not allowed to pee for minimum one hour at least so your bladder is coated in Vessilen.
I hope this info helps someone out.
S.

July 23, 2017 - 5:45am
EmpowHER Guest
Anonymous

Hi is there any update on trigonitis please? I'm 54 premenopausal and have had this diagnosed via cystoscopy . Now have burning pain all around pelvis and lower back . Thinking hormone related
Help anyone?

June 16, 2017 - 2:22pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I've just read that estrogen therapy is effective for post menopausal women, as you are of menopausal age and you'd be very near to menopause, I'd say you are spot on and should investigate hormone therapy with your Dr. ASAP!!

I've personally had some relief with doxycycline 100mg twice a day for 1 month, then 1 a day for one month with pessary tablets to treat any microbial imbalance, but I'm 29.

Can they can make us new bladders?!

July 25, 2017 - 8:09pm
EmpowHER Guest
Anonymous

Hello to all fellow trigonitis sufferers. I hope you all feel better than the last time you've posted here. I'm dealing with this horrible illness as well. My problems started in 2015 July, when I started having UTI's that eventually lead to cystitis and then it became a trigonitis. I have been diagnosed with it in June 2016, my urologist did a cystoscopy and saw a bit of redness there, that is not supposed to be there. She gave me antibiotincs (doxycilin) and suggested to do cystistat treatment. I refused doing it, since cystoscopy itself brought so much pain, I couldn't imagine dealing with familiar pain weekly during the treatments. My symptoms are constant urinating and stomach ache (in the lower belly). I've tried so many natural remedies, antibiotics, antidepressants, you name it... and nothing. And so many urologists, just like some of you say here do not deserve their doctor's name - they have no idea about this illness. It's heartrbreaking, since this illness stops you from having any kind of normal life.
Now I've recently had another cystoscopy (since I started feeling way worse) and my trigone are is even worse (altho after previous cystoscopy I had tried so many natural remedies, hoping it would go away). My bladder and blood tests are all clear (it's a very common case when having trigonitis). My doctor suggested cystistat once again or botox. I don't really understand how botox could help in trigonitis case, since it's being used usually used for overactive bladder syndrome. So I guess I'll have no choice but do the cystistat treatment. I may inform you on here how it goes, I have a lot of hope for it. If someone is having this treatment at the moment, please share how you are feeling.

Some things that helped me a bit:
Tea made from dry silene flowers (silene latifolia). You put dry flowers and just pour boiling water. Doesn't taste incredible, but it will make you feel better.
Parsley tea
Always pee before and after sex. (I had no idea about this before and had no problems)
Cymbalta x Amitrypletine antidepressants combo - helps with pain and makes you want to urinate less.

S.

March 3, 2017 - 12:49pm
(reply to Anonymous)

Hi I have been been suffering with the same condition for 16 years now, seen numerous specialist.
I have had Botox injected into the vaginal area targeting certain tight pelvic floor muscle areas and yes it did work but only temporarily as Botox is not permanent.
I have flared up again and it just feels like I have chronic cystitis very debilitating.
Put a big stress on everyday living trying to work and stay strong with your family and partner.
I also get the bladder spasms that causes my trigonitis to flare when that happens and I have no control of that.
The only thing I find that gives me some relief is half a tablet of Bactrium at night which is an antibiotic, a low dose anti inflammatory tablet Celebrex helps and get vaginal pessaries of Valium made by a compound pharmacy, place one in the vagina at night, take low dose of gabapentin which help with neuralgic pain.
Sometimes your pelvic floor muscles are also making the problem worse, check you don't have hypertonic pelvic floor, that means very tight muscles., which I have as well.
I have tried everything and I am still suffering. As I said I have been ok for 18 months after the Botox but sex flares it up immediately.
I do constantly use the Valium and Bactria when it get really bad.
I also find that taking prelief which a tablet that neutralises the acidity in your bladder helps before any meal.
Definitely take them, if you can't get them take bicarbonate of soda.
I'm seeing the specialist again next week, another cystoscopy. Having a urethral dilation helps temporarily.
Wish you all the best. Very debilitating disease to have, wish there was a cure.

March 3, 2017 - 3:57pm
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
(reply to Anonymous)

Hi sorry to her you are only 16 and suffering trigonitis.
How did you go with burning the bacteria away from the trigone area. I have heard if it called fulguration.
Try Botox injection vaginally it work for about six months but it does give some relief. Also fake prelief a two tablets before you eat and drink it will keep the bladder alkaline and stop the burning.
I take half tablet of batrium antibiotic at night and that helps a lot.
Hope you get well.
Audrey

March 5, 2017 - 8:23pm

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
EmpowHER Guest
Anonymous (reply to Carlita1)

One of the doctors (profs) who wrote the article you referenced is my urologist who performed the procedure on me today. He's been a miracle worker (saw 3 other docs before him - none helped) and I would encourage others to travel to TX to see Dr Zimmern. I suffered for 4 years terrible pain. 11 years in all. The right doctor makes all the difference!

July 12, 2017 - 6:42pm

Sorry, I accidentally posted that first post twice!

February 9, 2016 - 6:11am
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