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mouse

Registered: May 29, 2007
Posts: 19
Reply with quote  #1 
Hello.
I finally got diagnosed with a low grade chronic infection which I have had for 5 months in all likeliness.
A flexible cystoscopy revealed Trigonitis. My consultant didn't want me to take Destrusitol as he said the bladder may not empty properly, but without it I'm up all night and in bad pain.
Has anyone else been told this? I'm a bit unsure of this guy. He said I didn't have IC as there was no presence of ulcers. Now I know from reading that this is not at all satisfactory.
I'm currently on 2 months of antibiotics to try and get the Trigonitis to heal, plus doing the alkaline diet business.
If anyone has any experience of this or have suggestions, I'd appreciate it. It currently feels like this is never going to end.
Thanks
DawnCOB

Moderator
Registered: Dec 2, 2003
Posts: 4,489
Reply with quote  #2 
Hi,

The following question is from IC Network answered by Urologist, I thought you might find it interesting http://www.ic-network.com/askthemd/feb2001.html#134 

 best wishes Dawn

Q134: My urologist has diagnosed my condition as trigonitis. I can find little information on this disease and read that the symptoms are very similar to what I read about IC. What, if any, are the differences and what about treatment. My physician says there is no known cause nor treatment for trigonitis.

A: This is a review of question 125: Trigonitis is a non-specific reference to changes seen on a portion of the bladder floor called the trigone when evaluated with a cystoscope. It is a "generic" term commonly used by urologists and typically refers to squamous metaplasia.

The trigone is a triangular structure with boundaries between the two ureteral orifices (the openings that bring urine down from the kidney) and the bladder neck (the funnel portion of the bladder where it meets the urethra). Squamous metaplasia is also called "pseudomembranous trigonitis". It occurs when normal bladder lining cells (urothelium) are replaced with squamous (skin-derived) cells. It appears as a white, patchy, bumpy area on the trigone and bladder neck region: kind of like a thin white membrane.

The trigone is derived (embryologically) from the same origin as the vagina and therefore responds to changes in estrogen levels. The changes in the trigone as described above are actually due to low levels of estrogen and do not represent a pathologic or disease state. This is typically found in postmenopausal women but can also be found in younger women with fluctuating levels of estrogen and in men treated with hormones for prostate cancer. Autopsy studies have shown squamous metaplasia to occur in the bladder of nearly half of women and fewer than 10% of men. This then represents a normal finding and is not associated with inflammation and does not produce any symptoms.

Why so many patients are told they have "trigonitis" is a question I cannot answer. However, if symptoms persist, a distinct, pathologic diagnosis is mandatory by obtaining further studies, such as hydro distention to rule out IC, or even seeking a second opinion.

maryc

Registered: Oct 8, 2009
Posts: 4
Reply with quote  #3 

Hi Mouse.  I was diagnosed with trigonitis in August 09 (symptoms started August 08) and my urologist performed Diathermy.  Has anyone had this done?  Its where the urologist goes inside and burns the trigone to deaden the skin and new healthy skin is supposed to regrow??  I really dont feel it has made any difference to my symptoms, infact some times i think it is worse as it is impossible to have sex now whereas i could sometimes have it before.  Anyway im on antibiotics (6weeks low dose post surgery and 4 weeks high dose after that) but still no change at all.  The urologist said he was fairly confident this would all be cleared up in 6 weeks but its now 9 weeks... I'm waiting to get another appointment with him.

Also does anyone have a swollen pelvic area (as in it feels hard and swollen to the touch below your tummy)? Hate the way there is so little info on this!!  My doc says it does go away it just takes time but I'm struggling to stay positive.

I also had vulvar pain to begin with and then developed chronic pelvic pain in surrounding muscles.  I am ontop of the pelvic pain however as i found a very good physiotherapist to help explain what i can  do to get out of pain and the vulvar pain did actually go away with time by itself and a little accunpuncture (8 months approx) so there is hope there

Would love to hear from others and their experiences especially anyone who has had diathermy performed?!

Thanks,

Mary xx

DawnCOB

Moderator
Registered: Dec 2, 2003
Posts: 4,489
Reply with quote  #4 
Hi Mary,

I had rollerball diathermy two years ago whilst awake due to inflammation cervicitis and cysts. 

I did have an infection afterwards which cleared up with ABs. Once healed within 2 wks, felt much better and inflammation did go in this area.

best wishes

Dawn
JaneW

Registered: Dec 3, 2003
Posts: 1,447
Reply with quote  #5 
Hi Mary,I've had diathermy a few times over the years for bladder ulcers and  reddened patches.It has helped but unfortunately the ulcers and patches tend to come back in other areas.I have a large raw area at the moment found during cystoscopy this week and will be having another cystoscopy under anaesthetic so they can take biopsies/treat it.
I hope that you find something that will help to relieve your symptoms as soon as possible.
Love and best wishes.Jane XX
maryc

Registered: Oct 8, 2009
Posts: 4
Reply with quote  #6 
Hi all, thanks for your useful insight.  Its encouraging to hear that other people have experienced diathermy and have had some luck and relief from symptoms, I would welcome any break! 

2 weeks seems very fast I've got to admit I'm rather jealous!! Kinda wish I had a diagnosis when this all started a year ago and then I might have been on the mend faster.  Fingers crossed I will improve!

Cant imagine having diathermy done while awake though, ouch! sounds brave.  Cheers, Mary xx
DawnCOB

Moderator
Registered: Dec 2, 2003
Posts: 4,489
Reply with quote  #7 

Quote:
Originally Posted by maryc
Hi all, thanks for your useful insight.  Its encouraging to hear that other people have experienced diathermy and have had some luck and relief from symptoms, I would welcome any break! 

2 weeks seems very fast I've got to admit I'm rather jealous!! Kinda wish I had a diagnosis when this all started a year ago and then I might have been on the mend faster.  Fingers crossed I will improve!

Cant imagine having diathermy done while awake though, ouch! sounds brave.  Cheers, Mary xx

Hi Mary,

Gynea injected anesthetic into cervix, so apart from intial injection didnt feel anything... we had a good chat whilst doing the procedure ! 

best wishes

Dawn
Hope

Registered: May 16, 2010
Posts: 4
Reply with quote  #8 
Hi, would appreciate any help for sure.

I had a cystoscopy, hydrodistension and diathermy of cysts 5 weeks ago for relentless back to back UTIs.   Specialist said it was cystitis cystica - is that the same as trigonitis?   Anyway since then I have had another TWO uti infections even tho am on a high dose of ABs, little sleep and none of the tablets seem to help frequency, I seem to live in the loo!   Wish I hadn't the operation now.

Cheers, thanks for your help.
maryc

Registered: Oct 8, 2009
Posts: 4
Reply with quote  #9 
Hi Hope,

Your story reminds me of how i felt following my procedure but things improved for me over a few weeks following the operation so hopefully yours will calm down too.  Your body is bound to feel upset after surgery and temporarily feel worse so dont have regrets.

My frequency did improve very slightly since the diathermy and for a while it didnt kill me with pain during intercourse and gradually I was feeling heaps better.  but just after xmas 2009 I got hit by another uti and all my symptoms came rushing back,  I was really upset about this especially having made so much progress.  After AB for this the urologists kind of washed their hands of it saying it must be something to do with the wiring between my brain and my bladder which they cant see and therefore can only prescribe different drugs, all of which have had zero good effects with a few bad side affects.

THe last couple of months i havent done anything more and gave myself time to decide what to do next and I am now waiting to see a gynaecologist just to make sure nothing else is going on.  It really saddens me that in this day and age they still cant provide a definate diagnosis or cure for all these bladder problems us women put up with.  I am trying to get back to where I was last xmas and I try and stay positive about this, although hard at times.  I did it before so why cant i get there again?!

Anyway thanks for your message and I hope you feel better soon too!! x

Hope

Registered: May 16, 2010
Posts: 4
Reply with quote  #10 
Thanks MaryC.   So tired forgot to mention that I had a biopsy as well, can't wait to see what that says.   This site is terrific - my best wishes to everyone for speedy recoveries too.

Read somewhere that hypnotherapy, acupuncture, reiki and other alternative methods would be good to investigate so I started with acupuncture.   I am resistant to all the antibiotics now so my specialist wants to inject me with antibiotics but I have refused and went to the health shop and bought strong Cranberry tablets, D-Mannon and Inner Health tablets which rejuvenate the bowel after the punishment the ABs hand out so I shall be even busier!   Also forgot to mention that my glucose test came back pre-diabetic so that's another avenue to go down. 

Will report improvements by Monday!

Best wishes
maryc

Registered: Oct 8, 2009
Posts: 4
Reply with quote  #11 
It's definately worth trying all avenues.  I get connective tissue massage which is meant to get the blood flowing more freely to the damaged/inflamed areas.  My physio does visceral manipulation on the bladder which I found really helpfuly but that has stopped working recently so i am now trying the massage.  I have been having acupuncture since this all started and it definately helped with my vulvodynia but not so much the frequency/urgency.  I'll be interested to hear how you get on.  I also take cranberry supplements everyday and hopefully that will strengthen resistance to future attacks over time.  I actually find it really interesting trying out and researching all this stuff just a pity natural methods are slow like nature and takes a longer time. 

Hypnotherapy by the way is brilliant.  I read this amazing book by a guy called dermot o' connor and he gives you all these mind exercises to do on how the mind can help heal the body by using your imagination/sub conscious.  So I would recommend hypnotherapy or meditation.  I found a counsellor who did hypnotherapy as well which was a really good mix of skills but unfortunately she moved away so now i rely on this book when i make the time.  I personally find it difficult to switch off and do it everyday and to get the best results i think thats what one has to do...

Anyway have a relaxing weekend and look forward to hearing about your progress!

Hope

Registered: May 16, 2010
Posts: 4
Reply with quote  #12 
Maryc:  Thanks for your reply.   Have a bit more energy and am on top of a mild uti which I don't want ABs for.   Am delighted that the French Open is on and that takes me mind off it, I won't notice all the trips to the loo!   My post op check is this Friday, I don't have trigonitis I had Cystitis Glandularis woteva.   Sometimes I feel only the symptoms are treated, not the cause so it's up to me to ferret around researching.

Cheers


DawnCOB

Moderator
Registered: Dec 2, 2003
Posts: 4,489
Reply with quote  #13 

Quote:
Originally Posted by Hope
Maryc:  Thanks for your reply.   Have a bit more energy and am on top of a mild uti which I don't want ABs for.   Am delighted that the French Open is on and that takes me mind off it, I won't notice all the trips to the loo!   My post op check is this Friday, I don't have trigonitis I had Cystitis Glandularis woteva.   Sometimes I feel only the symptoms are treated, not the cause so it's up to me to ferret around researching.

Cheers



Hi Hope,

Folowing was answered by COB medical panel urologist thought you may find it interesting to read. best wishes Dawn


 
 
 
I have been diagnosed as suffering from cystitis glandularis. What is this and how does it affect IC sufferers ?

Cystitis glandularis is the term given to describe the appearance of the bladder lining in a certain form of bladder inflammation which is usually due to chronic urinary infection. A milder form of inflammation is termed cystitis cystica because the bladder lining breaks out in multiple tiny blisters. A slightly more severe form is called cystitis glandularis in which the "blisters" have a slightly thicker lining and in which the bladder lining itself acquires a cobblestoned appearance. There is no direct relationship between these forms of inflammation and IC as these are due mainly to infection whereas the diagnosis of IC rests on a number of clinical symptoms, signs cystoscopic and urodynamic findings. They may of course co-exist with IC.

Mr Paul Irwin MCh FRCSI(Urol)

Hope

Registered: May 16, 2010
Posts: 4
Reply with quote  #14 
Thank you very much Dawn.   Very interesting.   Appreciate that.

Best

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