Improved
6112 HealthChanged
3786 LivesSaved
3568 Lives0 lives impacted in the last 24 hrs Learn More
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!!
All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.
Add a Comment155 Comments
I'm 26 and have had this since I had a Urinary tract infection last May. The sysmptoms are soo off putting and I find it difficult to do anything. Even a trip to the supermaret has to be timed. I was diagnosed with this in Jully last year and was prescribed Long term antibiotics only I had had 4 different antibiotics before I was prescribed this one and I was allergic to Trimetheprim. I was too scared then to take the ones I was prescribed as I didn't want to be allergic to that aswell. It then cleared up by my wedding day in August. Thank goodness alllon its own. It has returned very slightly again and in the last week has got very bad again. I feel so sad that this just wont leave me alone and end up drinking 2 litres of water a day just so that when I do go its worth it. Biut someone told me a story about drinking too much water and now i'm worried about that. I have two young children and can't even run around with them coz I keep needing the toilet.
January 23, 2009 - 5:35amThis Comment
Jess, so sorry you're having such pain and difficulty with this. You didn't mention what treatment your urologist is recommending for your trigonitis, or what she/he thinks caused it? And may I ask how old you are? There are some differences in menopausal women with this condition.
The trigone is a small, smooth triangular region at the base of the bladder that signals the brain when the bladder needs to be emptied. As the bladder becomes more full, the trigone increases the urgency of the signals to the brain.
In trigonitis, inflammatory lesions form on the trigone region, causing symptoms of urgency, frequency and pain.
Trigonitis is diagnosed much more often in women (usually of childbearing age) than in men. About 40% of women may have some squamous changes in the trigone, where it happens in only 5% of men. It is almost never diagnosed in children.
The diagnoses of trigonitis is confirmed by cystoscopic examination of tissue in the trigone; did your urologist do this test?
While you don't believe you have interstitial cystitis, some of the bladder symptoms for various problems resemble those of trigonitis, and vice versa. Here's a good explainer page on all of them:
http://www.ic-network.com/handbook/basics.html
Have you been prescribed antibiotics?
Here is a doctor's forum from the IC association with a lot of questions and answers you may be interested in. There is one specific inquiry about trigonitis (check the 11th question) that discusses the use of antibiotics for treatment.
http://www.ichelp.org/Default.aspx?tabid=202
There are also a few questions here that address trigonitis:
http://www.ic-network.com/askthemd/feb2001.html
Here are some women in a naturopathic network who are discussing trigonitis:
http://www.pandamedicine.com/rt_education/239-12.html
Take care, and let us know what's going on. In the meantime, anyone else out there who's been diagnosed with trigonitis?
I see your frustration in finding information. There is much information available on IC but not nearly as much on trigonitis. I would like to get you more; are there any other aspects of your diagnosis that might help in this? Have you considered a second opinion?
October 31, 2008 - 8:57amThis Comment
Some helpful info from medical findings.....
4. Treatment
December 11, 2011 - 11:28amSeveral antibiotic regimens have been used to relieve lower
urinary tract symptoms in patients with pseudomembranous
trigonitis. Recently, Burkhard et al. [15] studied the efficacy
of doxycycline in 103 such patients. They received 100mg
doxycycline twice daily for 2 weeks, followed by 100mg once
daily for another 2 weeks. In 30% of the cases complete
response was recorded while 41% of the patients reported
improvement of the symptoms. In 8 of the 31 patients
that consented to followup cystoscopy pseudomembranous
trigonitis resolved completely while in 12 cases a decrease in
the degree of squamous metaplasia was revealed.
Recently, endoscopic treatment with the use of laser
fibers has been introduced. In a randomized prospective
study [16], 62 women with pseudomembranous trigonitis,
confirmed on biopsy, underwent treatment with either endfiring
(Group 1) or side-firing (Group 2) Nd:YAG laser
(energy setting: 30W). Results were significantly better
for the women of the first group (P < .001). Followup
cystoscopy and biopsies in symptom-free patients did not
reveal squamous metaplasia.
We are currently conducting a randomized prospective
comparative study between per os clarithromycin (500 mg
per day) and intravesical cystistat (40 mg of sodium
hyaluronate per week) in women with pseudomembranous
trigonitis. Sodium hyaluronate is a derivative of hyaluronic
acid that replaces the deficient glycosaminoglycan (GAG)
layer of the bladder wall. It is the traditional agent for GAG
substitution therapy based on existing theories about urothelial
dysfunction [17]. Sodium hyaluronate has been safely
administered with success for the treatment of chemical and
radiation cystitis as well as interstitial cystitis [18, 19]. In our
study patients are assessed with a validated symptoms score
questionnaire as well as with biopsies of the bladder trigone.
Relevant preliminary and followup results are warranted.
5. Epilogue
Although pseudomembranous trigonitis affects a large proportion
of female population, few patients seek medical
consultation and many are asymptomatic. Still, the true
meaning and cause of pseudomembranous trigonitis remain
elusive. The absence of an obvious causative factor makes
treatment difficult while the recent use of end-firing Nd:YAG
laser has demonstrated promising results.
Interestingly, the relevant literature upon pseudomembranous
trigonitis is extremely scant. Therefore, studies are
needed in order to understand better this very common but
underrecognized entity and provide adequate treatment.
References
[1] S. P. Jost, J. A. Gosling, and J. S. Dixon, “The fine structure
of human pseudomembranous trigonitis,” British Journal of
Urology, vol. 64, no. 5, pp. 472–477, 1989.
[2] A. Heymann, “Die cystitis trigoni der frau,” Zentralblatt fur die
Krankheiten derHahn und SexualOrgane, vol. 16, pp. 422–433,
1905.
[
This Comment
Jess hope things are going ok for you. Havnt seen a post from you for a while. Jo
June 1, 2009 - 4:15amThis Comment
Sorry to reply to you Jo, but I just came across this and can't figure out how to reply to Jess. Would you please post it to her?
I was diagnosed with Trigonitis in 1993 at the Mayo Clinic. Couldn't find any urologists who knew what was wrong with me in the entire Kansas City area. At least there are some things online about it now. Back then finding anything about it was as scarce as hen's teeth.
I am sorry to say the only thigs I know that will help you will take time.
1. Always sit on a hard flat surface.
2. Always sit with your legs apart.
3. Stay out of cars as much as possible. The motion makes it worse. They told me this at Mayo.
4. Wear very loose clothing around your waist. This is the hardest one.
If you can do these things for a while it will help a great deal. I am sorry but I started these so long ago I don't remember how long it took. I have had to buy only slacks with elastic in the waist, remove it and put in a very loose elastic with adjustable velcroe strips and I don't sew. You will learn to do these things if you want to be rid of the pain bad enough and the feeling of having to constantly pee. I had to figure out three of these things by myself. I hope you can benefit from my experience. My heart goes out to you.
Sherry
June 14, 2009 - 2:06pmThis Comment