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maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #1 

It seems that this is what I have! Has anyone out there suffered the same? What do you take by way of meds and how successfully? Is diet a help with this? Any information would be gratefully received! M.

ChrissyF

Registered: Jan 8, 2008
Posts: 107
Reply with quote  #2 
Hey There!
I have just been diagnosed with this also! Got diagnosed about 3 weeks ago. I currently take amitryptiline at night (30mg), low dose antibiotics at night (Nitrofurantoin - 50mg) and wear an oxybutyin patch.  These 3 things pretty much manage it, and I am reliably informed by my uro that this trigonitis will go! He said it's not that advanced, and is currently 'low level scarring of the trigone'. Said it's caused by a low level infection - otherwise known as 'squamous metaplasia'!! Nice!! I've made the ultimate error in googling it, which never paints a good picture! I think it is definitely something that can ease over time though, as it hasn't yet reached the bladder lining, so to speak. But I guess all cases are different, as I'm learning in this bladder world!! I'm just trying to be positive, take each day as it comes. Most of the time now, I would say that the frequency has been a lot better. I get bouts of pain, but they are nowhere near as bad as they were before I was on the amitryptiline. That has been a GODSEND and has been the only thing that has helped me sleep. Right at the begining of this doctor he gave me Zopiclone, but I soon found my body got used to those, and I had to take double dose!! Not good!! As regards diet, I'm just a bit careful about anything too obviously irritant - i.e. six pints of cider, and a few black coffees! which is what I used to love and get away with before! Ah, those days are dim memories! Now, I have one coffee a day, if I can, and the occasional tea. My uro just said to eat healthily and to carry on with the current meds until end of June. That will be 7 months on antibiotics, which he thinks will clobber it! Well, I really hope so! Please email me if you want to talk more about this trigonitis malarky!! Hope you're coping ok, and the meds you currently take are starting to help. Finding something that works is half the battle I think!! Whoops, sorry for this mega long post!!! xx
maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #3 
Hello Chrissy! A fellow Trigonitiser!! Thanks for all that info - very interesting. I'm on Pregabalin (a successor to Gabapentin) but only because I asked my friendly gp for it. My uro let me leave the hosp with nothing for the pain except 3 days of co-codamol!! You wait till I see him at the end of next week!! I've always had doubts about him and now I know that I was right all along - he's useless!! I've got Zopiclone too but I try to use them sparingly - only the nights before I go to work and maybe I won't need them at all when I increase the dose of Pregab!
I found all the anticholinergics useless. Tried Vesicare, Oxybutinin and the patches - Kentera. The uro gave me Regurin when I left hosp last week and my bladder reacted sooo badly to them! Also the side effects were very bad and after only 4 days my bladder went into a massive 2 hour spasm - so they went out the window!
I'm also avoiding the worst irritants - tea, coffee, alcohol and coca cola but I do drink decaff tea (as I love my cup of tea!) I haven't given up fruit as I don't find that they affect me really.
My histology report said that I have cystitis cystica (nothing to do about that and apparently up to 60% of normal bladders have it!) squamous metaplasia (that's not scarring really,it's good in a way as it's new regenerated tissue that the body produces to replace tissue damaged persumably by repeated infection and will probably be more resistant to the bacteria than the old!)The pathologist said that it was very common in females!I've also got the trigonitis as chronic inflammatory cell infiltrate!! So I've got this chronic inflammation to deal with. Don't know if mine will go away or get better or what and the problem is I don't think I'll believe what my uro says so I will probably have to seek a second opinion!
I wonder if I'll be given anti b's? I've always wondered about the low level infection connection/theory! Samples always negative etc etc I'm also having a blood test on Wed to check my oestrogen levels as I'm approaching the menopause and there is a link between low oestrogen levels and trigonitits apparently!
Enough! Thanks for the message - keep in touch. We will have to compare notes. Had a pain free day today and back at work so fingers crossed for the Pregab! Maz xx
ChrissyF

Registered: Jan 8, 2008
Posts: 107
Reply with quote  #4 
Hi There,
Just to say, good luck with all the tests on Wed! Hope they manage to find a cause. It's always good to know what gives us such agony!! Anyway, have sent you a long winded email earlier - hope it arrived.  I'm always unconvinced of me pressing the right buttons on here!!  Take Care, hope work went ok today with the tablets etc.
maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #5 
Hi Chrissy! Yes, got your e-mail - thanks x Will reply in full probably later this evening - trying to fit eveything in!
Only having a blood test at the gp's surgery tomorrow. I've reqested this to test my oestrogen levels!
I think the histology report confims that I have trigonitis cos that is the area the uro concentrated on with his blasted biopsies!
Work went well today thanks - felt much,much better and managed to stick to my normal hours! So I think my body is gettting used to the pregab but I need to double the dose tonight - so watch out! Another largely pain free day -  yipee, I feel so privileged. Had a bit of a bad patch in the middle of the night though - not sure why! M xx
ChrissyF

Registered: Jan 8, 2008
Posts: 107
Reply with quote  #6 
Hey There!
Glad to hear that the pain is under control! It so much improves quality of life! There's another email winding it's way to you with more mad thoughts on this trigonitis thingy too!! Just a thought about the pain in the night. I also have this happen very frequently, and often have to get up and pop some painkillers. I wonder if it's anything to do with the urine being more concentrated at night, and irritating the bladder? Or, it could just be because you're so much more 'aware' at night, having no other distractions, so everything seems amplified? Oh, the mystery of these bladder conditions -one day they will have all the answers!! xx
Mazzie

Registered: March 30, 2009
Posts: 325
Reply with quote  #7 
hi can I ask what Trigonitis is??

thanks

mazzie
maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #8 

It is inflammation of the Trigone area of the bladder which is the broadly triangular shaped section of the bladder at its base just above the urethra.M.

Mazzie

Registered: March 30, 2009
Posts: 325
Reply with quote  #9 

thanks for this can it be caused by using strong pain medications for a long time?  Does it ever resolve or can the drug Emiroln cure it?  I am not aking you professionally but anecdotally  Mazzie

maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #10 

No it can not be caused by taking strong pain medication. Its more likely cause is damage by repeated infections but this is just a theory. It may or may not resolve itself - depends on the individual. As for Elmiron curing anything - I don't know. Apparently it helps some - whether this is permanent or not I can't say. The information sheet that comes with the drug is ambivalent to say nothing of the information you wheedle out of various urologists. Hit and miss affair really. The symptoms of this and IC/PBS are similar - perhaps its even the same thing - who knows?! M.

Mazzie

Registered: March 30, 2009
Posts: 325
Reply with quote  #11 

thanks Maz I seem to have the symptoms of Trig beccause I dont have any urgency or frequncy and it actually feels like an ulcer in my bladder.  Its horrible if I llie on my side too.  Do tou think Urologists know what this is and would pik it up at initial consultation as a possibility?  I also dont know what to extpect from my 1st vist to a priavte Urologist do they do an internal or just press the belly ??  Mazzie

Claire80

Registered: May 11, 2008
Posts: 37
Reply with quote  #12 
Hi Mazzie

My first appointment was a private one, although I now see the same urologist on the NHS (it was getting too expensive) but it was definately worth it in the beginnning to get things moving.

During the first appointment, he went through my history and symptoms in alot of detail - if I was going again, I'd write it all out first as you know what it's like when you're sitting infront of someone, you forget to mention little things.

He then examined my back, stomach area, pelvis and then did an internal examination - I was asked to leave a urine sample and had a blood test to rule out diabetes.

I then went back for a kidney & bladder ultrasound and an x-ray, plus had a flow test - I think these are the basic things to look out for kidney stones etc.

In my case all of this was clear so I had to have a cystoscopy and urethral dilation - I switched to the NHS for this which was a lot quicker than I thought it would be.

I hope that your appointment is useful - it helps just to see someone in the beginning.

Claire xx
Claire80

Registered: May 11, 2008
Posts: 37
Reply with quote  #13 

Plus I forgot to add, before I went to my first appointment my GP got me tested for Clamydia, Trigonitis and general pelvic infections as they thought that this would be one of the first things the urologist would do - by having it done first at least you can go armed with any results so these can be ruled out as a cause to start.

Mazzie

Registered: March 30, 2009
Posts: 325
Reply with quote  #14 

  Thanks Claire thats so helpful.  Does Trig show up in blood tests then?  Mine was clear but I dont know what they tested for.  I will write my symptoms out  in detail and read them to him  thanks again M

maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #15 

If you had trigonitis then you would definately have urgency/frequency - and badly too! The pain is very low down and not at all as you describe. A blood test doesn't help and neither do urine tests. It is inflammation which may show up on cystoscopy with biopsies. A raised leucocyte level in your urine is an indication of inflammation but not conclusive and can be generalised rather than specific. M.

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