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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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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
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
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