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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

In response to my above post, the urologist put her on Macrobit for 2 weeks, with a follow up appt at that time. We also have an appointment with a kidney specialist as this was made prior to the diagnosis of trigonitis.

December 8, 2011 - 1:52am
EmpowHER Guest
Anonymous

Hi. My daughter was diagnosed with pseudomembranous Trigonitis today after a cysto was done under general anesthesia in same day surgery. She just turned 17 and has been suffering for months. She has had numerous urinalysis which all show blood (she also has visible blood in urine at times), she hasalso had extensive blood work, a cat scan and an ultrasound. Except for the blood, all tests were negative. She has had pain in her left flank and in her lower pelvic area as well as some discomfort urinating at times (we were just hoping for maybe a stone or something simple). Her regular doctor put her on Tramadol for the pain which seems to help a bit but also makes her tired in school:(. When the doctor came out of the OR with some pictures of this "plaque" build up on her bladder, he said that this is very common and can cause blood in the urine as the plaque tears off of the inside of the bladder and the underlying tissue can bleed a little. He said however, that it does not usually cause any pain.....what? So I thought that we were not at the end of our diagnosis search as the pain is one of her main symptoms. I thank you all for your posts and in reading them I see that pain is a huge factor in many cases. She does not seem to have the urgency or frequency (yet), but is just starting to notice some changes in her stream. After reading many posts I think we will try tome homeopathic regimes ie:primrose and oregano as well as the otc med AZO. I also like the water therapy too. I appreciate all of the comments as I feel that she is not alone. I will have her join this forum and do some research herself. Wishing you all luck!

December 8, 2011 - 1:48am
EmpowHER Guest
Anonymous

Cystitis can be treated with natural and drug-free tampons “Beautiful Life”.I love them for 1000 reasons. They are a wonder. See for yourself. My recomendation - 4-6 in a row, and then every 2-3 months one to maintain, for a year.
A Sufferer

November 22, 2011 - 10:59am
EmpowHER Guest
Anonymous

After all these discussions, and all recommended actions...last time I suffered trigonitis problem and taking antibiotics for e-coli, I took into consideration all these years of effort to beat the problem, i gave up my job, here I am at home, 6 months of not being under the stress help the most of all. It seems that the stress adds up a lot to that sensation, destroys immune system, so the body can not fight it all.
I occasionally take oil of oregano, very strong cranberry tablets, occasionally drink different teas, water non stop, every morning 1l to start the day, I take apple vinegar, no sugar, occasionally d-mannose, avoid frequent sex, I use beautiful life tampons, and all that and more but without a worry, I am Just used to all that now, I sleep well, not seeing people that make me feel bad and sad, I do nor worry over everything, let go of controlling everything around..
listening to music for relaxation,walking...and e-coli is finaly gone..which made my trigonitis sensation stop...it is connected somehow ofcourese...and I am waiting for the next inflamation, when will |I have to deal with hormones, since I am 45, and aware that it is next stop. But not to panic and take the time off the stresfull life is a must.

November 4, 2011 - 6:43am
EmpowHER Guest
Anonymous

I have taken long term use of antibiotics, macrodantin, bactrim, keflex etc.. none of them work,they give you temporary relief, but the side effects of long term use is worse, thrush and a very poor immune system. I have now developed autoimmune problems due to long term use of antibiotics. Hormone therapy doesn't work, if you are low in eostrogen this could cause cystitis as it causes dryness in the vagina, and eostrogen cream inserted vaginally may help. Have a blood test first to check you hormone level, if they are low then try hormone therapy, if not then don't waste your time putting extra chemicals into your body. I have been taking a tablet called d-mannose its a form of sugar that stops any bacteria adhering to the bladder, this seems of have helped, but has not taken the symptoms away completely. I do find that stress causes the trigonitis symptoms to flare up.
I have also been to see a physiotherapist who introduced a gadget called an epino. You insert it into the vagina,its like a balloon, you inflate it and stretch the muscles of the vagina, especially the muscles closest to the urethra. I have been using this and have found to get better relief. By stretching this muscle and also using 5 mg of valium at night it seems to relax the muscle and this allows a good flow of urine.I find when my trigonitis is really bad,i have a restricted flow, feeling that I have to push to empty the bladder completely. The physio also said when emptying your bladder never push the last flow,wanting to make sure the bladder is completely empty, sit and relax and let the last flow come naturally. Macrodantin causes many side effect be careful with this medication. Yes drink plenty of water,although I haven't felt any difference, except that I have to go to the toilet more often.
I feel with trigonitis there is no cure. I have been suffering for over 10 years now. Having urethral dilations helps to relieve the symptoms but its only temporary,the nurses can teach you to do this manually. I have had at least 8 of these,and did get some relief.
I don't mean to be personal, but does anyone find that an orgasm causes the trigonitis to flare up immediately, and the symptoms are back to square one??? Obviously the spasm of the muscles must play a significant part in inflaming the urethra. This is just an observation. Audrey

November 3, 2011 - 4:44pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I don't know if you have been reading previous posts, but I am consistently posting about a medication (not antibiotic) called CYCYSTAT at least here in Europe. It's the only thing that will help. What happens with trigonitis is that if you get a cystoscopy done, you will see that at the back end of your bladder the trigone which means triangle and that is why trigonitis pain is not easily understood. It hits you in places you can't even imagine. It doesn't feel like the bladder, but anywhere underneath, in the rear, in front, everywhere from the waist down. Now, the trigone area when affected by trigonitis shows a fluffy cottony "thing". Now no matter how many meds you take, how many herbal remedies one may use, how much stress free you try to keep your life, that white cottony thing won't go away unless you get this therapy. This is a liquid form of hylauranic acid (excuse my spelling) which they put in your bladder via your urethra every week for about 9 weeks, and then some monthly follow up sessions. In time this heals the cottony thing in your bladder which is like an ulcer, a wound that needs this special therapy to go away. After the therapies you feel like you did when you felt "normal", something which I doubt you have felt in a long time. Talk to your urologist or change your urologist and stop wasting your time and money on alternative measures. Sorry to disappoint you but they don't work. It has nothing to do with stress or eating well, or drinking well, etc. Trigonitis is a royal pain and unfortunately it is very impossible to heal any other way. And yes it does flare up after orgasms. Get a good pap smear/culture, just to make sure you are clean of any bacteria, then talk to a urologist about the CYCYSTAT. Take it from an ex trigonitis sufferer.

November 22, 2011 - 1:28pm

As I have written before in previous messages, and because I have researched the topic of trigonitis in depth, I advise women who suffer from it that the only thing that works is the urethral medication called "CYCYSTAT". A liquid form of hyaluronic acid, as the urologist explained to me. You don't feel the difference right away, it takes time, maybe even a year, but after that you are perfect. You feel perfect again, and you forget all the suffering that you have dealt with for the past few years. Nothing else works. Not hormones, not avoiding spicy foods, not antibiotics. Im telling you this because I went through a series of doctors before discovering the best doctor. Just made me wonder if most of these doctors deserved their degrees in urology. First of all, talk to your doctor about it and then get started with treatment. It's weekly for a good 9 weeks, and maybe follow ups every month, depending. But you will see that with time it just gets better and better. Trigonitis is like having a wound that doesn't heal. This treatment gets right to the wound as it's given to you via urethra and it makes the wound go away. Good luck. Take it from a former trigonitis sufferer who is now feeling like she never had it. I tried everything under the sun myself and nothing worked. Nothing else works, this is a guarantee from my doctor. So either take this advice or you will be trying a variety of things that will have no positive outcome in the end.

October 7, 2011 - 8:22am
(reply to leanne)

Hi Leanne...I've had the same urologist for over 10 yrs...it's been the same treatment for all these yrs, macrodantin maintenance ...with only brief periods of relief..I'm going to make appt and ask him about the Cycystat :)
Peace

Here's a link that may give some insight to those who suffer with Trigonitis
http://www.wisegeek.com/what-is-trigonitis.htm

December 11, 2011 - 8:07am
EmpowHER Guest
Anonymous

I'm 26 years old and have had UTI's/ Bladder infections since I was a baby. Have taken every antibiotic under the sun, urinary tract support, high dosage cranberry tabs, none of which helped long term. I had diathermy and urethral dilatation for triganitis about a year ago. I have had 3 bladder infections post surgery and have taken antibiotics (macrodentin). Thats my background. I'm curious about Evening Primrose Oil, does it work as a maintenance or would I be wasting my time. I will give anything a go, but I'd love to hear from girls who have trialled it and what their outcomes were.

Alice :)

October 5, 2011 - 5:16am

Went to OB/GYN to get the results of my hormone levesl after having the sotto pellets inserted over a mo. ago....also discussed my trigonitis with Dr..He told me to take 1500 mg of Primrose and that the sublingual progesterone I take nightly will soon heal the trigonitis...the primrose helps too..but mainly the bioidentical hormones..takes time...but we women now have hope...till the hormones do their magic..I'll cont the antibiotic maintenance..the Dr. also adviced me to cont. too...

July 29, 2011 - 4:02pm
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