Improved
6112 HealthChanged
3785 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 am 35. I was diagnosed with INterstitial Cystitis when I was 20. I tried everything from pain meds, antibiotics, catherizing myself at home four times a day using a DMSO/heparin rinse (which set the burning pain off worse). I went into remission when I was 25 for a few years and I have gradually gotten worse. I have chronic severe burning pain everyday and night!! I am soooo miserable. The only thing that eases my pain so I can go on with my daily work and life is Lortab. I am NOT a pill junkie. Its just a fact that this along with Cystostat helps my pain. I have recently had a Cystoscopy that showed bladder polyps, pseudomonas Trigonitis, and had my urethra stretched. I felt decent for four days two weeks after the surgery and since then I have SEVERE burning pain that just never ends. I watch what I eat and drink, I do what I am supposed to and I just cannot feel good for one single day. I am soooo discouraged and Doctor's around my area do not seem to be compassionate enough or give any answers. I feel for everyone that has this problem as bladder pain is so hard to relieve!!
August 8, 2010 - 8:49amThis Comment
Anon - I'm sorry to hear of your pain, and your discouragement. If you aren't able to find the treatment you need in the area where you live you may want to see if there are specialists available in other communities, perhaps one which has a teaching hospital and medical school. In the meantime, I've found some information on treatments for this condition which you may find helpful. Best wishes in finding the answers you seek.
August 9, 2010 - 5:26pmPat
http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/
This Comment
Hi again,
August 9, 2010 - 9:17pmits been awhile.Unfortunately I have been doing alot of nothing for the past month as my trigonitis has really returned with a vengance. I am not sure if the infection i had started it or visa versa. but i have have three bladder infections in six months now and the last one went to my kidneys, but i am now on the mend and only have the trigonitis to contend with (did i say only?) at least i can walk without being bent over double today. Good news is I have found a female urologist in Adelaide, Australia. who has a very reputation with female disorders including interstitual cystistis, etc. i know that it is different from trigonitis which i was diagnosed with but it will be great to get another opinion. i do have to wait till the end of October, so i am going to have to see if my gp can prescribe something for the pain so i can actually start moving around again. it will be interesting to see what has changed since my last cystoscope about six years ago. i will keep you posted. you wouldn't think i could be so silly as to let an infection get out of control, so if you think you are getting worse or might have an infection go and get some antibiotics like yesterday, i have learnt the hard way(i think i have become doctor phobic, hoping the symptoms would go soon) having inflamitory bladder disorders dont mean that you cant suffer from an infection/s too. does anyone know the best pain relief for trigonitis/IC that is available in australia, there have been some mentioned here but none is familiar. sorry if this sounds a bit muddly, but my brain has been sick too i think.
thanks
xxx
This Comment
Clonte,
Thank you for updating us! Please let us know how your doctor appointment goes in October.
It would be interesting to hear more about your story. Why do you think you waited so long before seeking medical attention? Were you scared, or did not think your concerns would be taken seriously?
August 10, 2010 - 1:52pmThis Comment
Yes you were right the first time. I was scared of trying out a new urologist after my old one retired and as we live in a rural area, i do not have much choice of urologists. My hubby has been to both of them and strongly advised me against seeing either of them as they were very uncaring and unsympathetic putting politely, when he saw them. he suffers with chronic epididimytis and extremely high blood pressure. so i guess it is hard to find one that is sympathetic and acknowleges your pain. i am quite confident with trying out this new female urologist as she has been recommended by my daughter's nursing friends as being very good. i will definitely keep you posted.
August 10, 2010 - 11:29pmcheers
xxx
This Comment
i would have thought that quitting smoking would be the first thing to do for your health let alone trigonitis control. I find that if I leave certain foods alone like raw tomatoes, citrus, capsicum, chillies, soft drink etc, then i can still have coffee 1-2 cups per day and 1-2 glasses of wine a day. most importantly do not allow yourself to get dehydrated so dink plenty of water - you dont have to be stupid about this or your will make yourself sick and upset your electolytes. i am sure that everyone has their own way of coping with this condition but i have found that you do not need to give up everything you love just modify things, unless you are having a major flare up then cut out the coffee and wine for a few days until things settle. here is my way
April 9, 2010 - 4:57pm1. only eat and drink small amounts of acidic food and drink, cooked vegies are better than salads
2. no soft drink
3. no smoking (that goes without saying)
4. urinate and wash after love-making this is a must!
5. do not use public spas, at home spa baths may be ok if your water supply is clean (the ones that are filled fresh each time) only if you have a shower first and use no additives in the water or OUCH!!! the exception is veg based oil and essential oils that you can tolerate
6. as soon as you get that feeling - you know... ouch! try to take 4 tums and a glass of water with 1/4 teaspoon bi-carbonate of soda - i recently tried this and believe it or not it settled my flare up like magic.
7. see your doctor if your symtoms are severe as you could have an infection.
8. try and find a nice urologist in your area (when you do can you tell me I live in Mildura, Victoria, Australia)
9. try and keep your sense of humor
10. if your feeling bad write it down here as it helps to get things straight in your head and you never know, you might actually read some advice that works for you.
by the way I could not think of anything worse than having any treatment that requires a catheder to be inserted on a regular basis as i have a phobia of these things because of my experience with my botched hysterectomy and anyway my bladder goes into major spasams when i have had a catheder in the past, so what suits some girls will not suit others. so pick and choose the advice as there is no definitive answer that suits all.
This Comment
Hallo again...
February 25, 2010 - 3:54pmAm I the only one who got better...? I am the one who wrote about informotherapy, some months ago. I know that kind of treatment is not possible to have in America, but not quite shure!
What I know for shure , they do it in Ukraine, and my doc is Russian.
I am from Serbia, and after I obbeyed every single demand from my nutricionist who is practicing informotherapy ( frequencies), I am happy and cured, without a single tablet, or antibiotic, or operation or argyrol, or whatever.
I eat whats good for people who have A poz. blood type. Thats my type.
I drink a lot of water, or herbal tea. Mild.
I make myselfe a garlic lemonade... etc,etc...
I was receiving serious instructions how to behave and think about myself, my body.
It lasted 10 months. I managed to perfect my immune system, conciosnesly, daily, and learn what I really dont like in my plate, what food hurts Me.
Frequencies- information cleared all the patogens that was inside me, like esherihia,stafilococ,candida,some parasites and viruses, everything that was bothering but at the same time.The weakest link in my case was my bladder, because I had no mercy with it.
Drinking soft drinks, coffie, cola, alcohol-beer , vine, etcetc, eating shugar and solt like desastreous, having it rough, no pure water, plasic clothes, some early bladder inflamations. Stress, the air,everything is frightening us . And threattening us.
all that conribute to that condition that the trigon does not sleep. Never sleeps, and you are in the agony. Its a new age desease, great weakness of some part of us.
We should be all taking the best care of ourselves in order to be healthy and apreciate what we have. And insted we compromise, we cant help it.
Now I see how much smoking hurts my bladder, and that could be the last cure for me, quit smoking. Or I am at risk of tigonitis/forever...
This Comment
Hello there,
February 8, 2016 - 6:22pmI am so excited and intrigued to hear about this therapy, as it is something I have not heard about in the USA. I have been trying to search the topic all night but didn't get many results. For instance, where is this being done specifically? Do you have a name of the Doctor or clinic you went to? Any information would be helpful. So glad you got better! It's gives us all hope that there could be a way to actually cure this disease and not just treat the symptoms.
This Comment
Hello,
September 10, 2012 - 1:22amPerson from Serbia still active on this forum? I am from Bosnia and Herzegovina, dealing with trigonitis and chronic UTI (non-bacterial). I would like to hear more about informotherapy? Is that Zapper frequencies? And is there any approved medication for IC or trigonitis in our countries (Balkan)? Dr. reccomend me a diathermy therapy with cystoskop.
Thank you in advance?
This Comment
Hi,
February 23, 2010 - 8:59pmI was wondering what treatments you ladies have had for trigonitis? I was diagnosed july 2009 with it. I have undergone argyrol treatments ( Once a week for six weeks). Which did not fix the problem. I haven't been back to see the urologist yet, because I have no health insurance. Did anyone ever get a treatment method that worked? I am starting to believe that I will be stuck with this forever.
This Comment