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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

Hi!
I have never posted on any med website/forum before, but it is clear after my own experience that everyone is really keen on support and answers about what to do about Trigonitis. 3 years ago, a horrific UTI (with bacteria) was treated with Cipro. For the next 2 years after, symptoms of a UTI started to impact me once a month of more. Very sudden spells of urgency and burning when urinating, along with a very uncomfortable sensation when I was not on the toilet squeezing out (often bloody) droplets. It would last from 1-2 days to 1-5 days. The symptoms would not seem to improve with drinking fluids, water or alkaliser . I was on myriad of antibiotics- where I am now convinced I am resistant to a few strains. GP's deserve a lot of recognition, however I was going to SEVERAL and only ONE suggested I see a urologist. The repetition of hearing "do you wipe front to back" "clean up after sex","don't use soap", "DO use soap" MY GOD.... I was exhausted. Knowing something was obviously wrong I did see a Urologist. Armed with my culture-less pathology results from previous "UTI's"/ bladder/kidney Xrays. He made it very clear that this is not an infection, it is an inflammation. Where you bladder is supposed to be smooth, mine was so inflamed/irritated that small, normally unsubstantial bacteria, undetectable by culture, irritate you so much that you feel like you have a UTI! eh viola! TRIGONITIS. Now he put me on a prophylactic antibiotic- which was a small dose to keep that little bit of bacteria from bothering me and it was a life changer. Then a couple of months ago I had a cystoscopy with fulguration/ diathermy, where he burns away the scar tissue that is inflaming your Trigone. You should be under general for this because it really would not be fun. The healing process he said would take 6- 8weeks and boy was he right. It got worse before it got better, with extreme burning. I wanted to pass out at times. But it healed! There is a possibility that this does come back, and it can be connected to hormones (where symptoms get worse closer to your period) and I do notice a slight twinge of discomfort, but it is a 180 in my book! So I guess I was compelled to write this long piece to encourage someone else, especially a woman, to seek out a Urologist about it! Not a Gyno. There a connections between their functions, but like your eyebrows, your Bladder and Vagina are sisters, not twins. So don't lump their functions together! GOOD LUCK!

January 29, 2019 - 4:32am

Newly diagnosed with Trigonitis. Took a year before I went to the urologist - just couldn't take it anymore. On my 2nd round of Doxy and will start a prostate medication next week. Supposed to help with inflammation of the urethra. Hope it is helpful because - well - this sort of sucks.

So, am I correct in that there really is no cure - just work to keep the symptoms under control? I haven't yet found all my triggers - alcohol is definitely one of them, unfortunately. Frustrated.

September 28, 2018 - 4:47pm
Guide (reply to Jewels143)

Hello, Jewels143.

As you know, trigonitis is a condition of inflammation of the trigone region of the bladder. It is more common in women.

The cause of trigonitis is not known, and there is no solid treatment. Electrocautery is sometimes used as a treatment if deemed necessary. Your doctor can tell you more about this. Several drugs, such as muscle relaxants, antibiotics, and antiseptics such as Urised are common treatments. Other forms of treatment include urethrotomy, cryosurgery, and neurostimulation. Each person is different. Some treated with antibiotics have no further issues, while other's may need long-term treatment.

I hope your current treatment will be successful for you.

Helena

September 29, 2018 - 5:30am

Newly diagnosed with Trigonitis. Took a year before I went to the urologist - just couldn't take it anymore. On my 2nd round of Doxy and will start a prostate medication next week. Supposed to help with inflammation of the urethra. Hope it is helpful because - well - this sort of sucks.

So, am I correct in that there really is no cure - just work to keep the symptoms under control? I haven't yet found all my triggers - alcohol is definitely one of them, unfortunately. Frustrated.

September 28, 2018 - 4:33pm
EmpowHER Guest
Anonymous

Is it okay to share a new Facebook forum here? Me and another women with Trigonitis have made a group on facebook to connect with others and share informations - this forum is great as well, and it doesn't have to be a contradiction. Will just be nice to stay in touch and share our struggles and learnings - since this illness doesn't seem to have a 100% sure cure. Let me know if it's okay with a link. Otherwise - we are basically the only forum on facebook for Trigonitis so come find us!

July 17, 2018 - 8:51pm
(reply to Anonymous)

Can't find you on Facebook - can you share the link?

September 28, 2018 - 4:24pm

Hi everyone! So I was diagnosed through cystoscopy with Trigonitis. I am the initial stages of figuring out how to go about it, and know very little. I just wanted to give one trick that has helped me, before I even knew it was Trigonitis. Colloidal silver - its commonly used in animals but many also recognise it was an alternative antibiotic. Natural. I used to get relief almost instantaneously. Do research it. I havent done a lot of background on it, but here you go. I feel for all of you, and hope we can exchange our experiences - and hopefully one day figure out how to cure this.

July 16, 2018 - 5:35am
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
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