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[bluebird68]

Hi Ladies, I have been suffering with bladder tenderness and on the odd occasion had trace of blood in Urine. Anyway, I saw a urologist who looked inside my bladder and said I had a form of eczema.  I assume its atrophy.  I have been invited to have a bladder installation which I believe may help.  its not a cure but something i can administer myself at some point.  Anyone had this procedure and did it help? What is your experience? Is it worth the effort? thank you all,  A long suffering member.  Hoping between us we can support eachother

[Snowcat]

Hello Bluebird.  Yes I have had bladder instillations called ialuril for interstitial cystitis - I had one a week for 6 weeks then it was supposed to reduce to 1 a fortnight then, 1 a month with a maintenance dose every 6 months at some point but then Covid happened and my course was interrupted. 

I decided with the agreement of my urologist that it didn’t really make much difference to me so we didn’t resume it.  I know it makes a huge difference to some but not to others - another case of ‘we’re all different’ I guess. 

I don’t know if the instillations you’re talking about are the same things.  Maybe someone else on here will know more.  It’s difficult making these kinds of decisions so you have my sympathy!

[bluebird68]

thanks snowcat.  I suppose we can only try these things and see if it helps as we are all different.  I suffer from dry everything, skin inside and out.  Dryer than the sahara desert. Thank you for sharing your experience.  I hope you have found some way to manage it. I do use vaginal estrogen pessaries and gel which helps a bit.

[MrsMitch]

This is very interesting ladies. Obviously you never hear about these things until you have problems with your bladder. Will you update us, bluebird, if you go ahead? Can you elaborate on what you describe as bladder tenderness, please?
My bladder us driving me mad & it'll apparently take at least 3 weeks to see if the solifenacin will work. Until then I'm busting to pee constantly now.

[bluebird68]

Over the last few years I have been having problems emptying all or most of my pee and having frequent visits to the toilet. Also to the go surgery with samples of pee which turned out. Ot to be a water infection. It's exhausting. I just feel this feeling of soreness lower abdomen above the pubic bone. Anyway,  I was referred to urology who asked for a pee sample and found a trace of blood. Looked Inside and said  it looks like eczema. The tenderness/soreness feels worse when the bladder has pee inside.  I intend to go ahead with the treatment to see if it helps.

Also urology said antihistamines may help. It has made no difference to me.

[Snowcat]

Bluebird, ask urology if you could, in fact, have interstitial cystitis (aka painful bladder syndrome) and if they say you would have hunners ulcers if that was the case, that is not true.  Most cases don’t.

I have a lot of experience of this condition unfortunately! The normal ‘Teflon like’ lining of the bladder becomes compromised and is very painful especially as the bladder fills up.  A constant feeling of having a full bladder even when it’s almost empty is one of the symptoms. 

I hope you haven’t got that as it’s challenging but there are various treatments that help manage it - antihistamines are one (didn’t work for me though) but diet is one of the things that most find helpful - and making absolutely sure, via proper lab testing, that you don’t have an embedded UTI (some are hard to find - I never accept a negative result if I’m in a lot of pain) long term low dose antibiotics can help or, better still, a drug called Hiprex but you need to be infection free to start that.  Google interstitial cystitis and see if you think it could be that.  (That could look like excema) if so, ask to be seen by someone who has experience of treating that condition.  Not all doctors have this, as although it’s not rare, it’s not that common. 

[MrsMitch]

Snowcat, can I ask re interstitial cystitis,  diet a change in diet help & how long after cutting out irritants did symptoms improve?
Also, having just read a little about the condition,  is it possible that the years of untreated GSM I had mean that a normal bladder/urethra cannot be restored regardless of taking HRT with appropriate GSM treatment?
How's it going with your mum, are you having a lovely time? 😊

[bluebird68]

Thank you snow cat much appreciated.  I am managing, some days seem worse than others but its an ongoing issue for many years now and also think my pelvic floor is weaker than it used to be. I think keeping a food diary is worth a shot and will ask the urologist about this.  Im not sure if the urologist will perform the procedure or a trained nurse.  will add to this discussion once the treatment is completed as it may help others.

[MrsMitch]

Bluebird I think a food diary sounds a good idea. I've read about what aggravates the bladder so I'm going to cut things out.
I hope it helps you & I wish you the very best outcome with your procedure. It's such a horrid type of condition. Sometimes I'd love to just sit & read or watch a film without being distracted with the discomfort or keep getting up to pee, bet you would, too.

[bluebird68]

What a lovely message Mrs Mitch. The times we took granted. I hope we both find some peace from the irritation. Always grateful for a new day.  I have the occasional less bad day which we have to hold onto x