Hyaluronic acid treatment for damaged bladder

[Dustyangel]

Hi guys finally getting some answers of what has been going on with my bladder. (Bleeding from it) Had a cystoscopy yesterday, after the usual embarrassing bits, I found it quite fascinating to see inside my bladder on the screen. She never gave me a diagnosis but looking at my past history it is probably caused by the radiotherapy .it's like half of it is healthy the other half is red raw and ulcerated , still have blood in urine picked up by a urine test. So anyways she has suggested that I have hyaluronic acid treatment to see if that will calm things down, anybody had this before? Pros and cons? She said it may or may not work I said worth a try. Also she has upped my solifenacin to 10mg instead of 5mg a day. To see if that will help me needing to pee 5million times a day. Thanks again for any advice x

[Mariecapp]

Hello. No I have never had that but I hope that it helps you with your problem. Hang in there

[accidentalcarnivore]

Hello dustyangel, sorry you are suffering. bladder problems are difficult to deal with. I had radiotherapy for CC in 2007 and quite a bit of similar symptoms for a few years. Did not have that treatment but that does sound helpful. I luckily resolved all my bladder symptoms after about 3 or 4 years by restricting foods and drink that irritate the bladder. Now i still have radiation cystitis but i dont have pain or frequency. Occassionally, i have blood in the urine because the bladder lining is thin and if i have done alot of abdominal exercise or lifting in one day, i might get a bit of hemoraging due to the thinness but it stops quickly and no pain. My diet is eaiser now but i was very strict for several years to enhance healing. Hope this helps. I would try the acid wash if it had been available to me. Its important to get the irritation and inflammation down

[Dustyangel in reply to accidentalcarnivore]

Hi accidentalcarnivore

Thank you for your reply, I finished treatment for cc in Dec 2019 and have had various long term issues since but bleeding from the bladder is a new one to me and was really frightening at the time over the last month I would say it hasn't been bleeding not visible to me anyway but was picked up in the test. Bladder looking quite sorry for itself! I will definitely look into foods/drinks that can irrate it and see what I can do. I'm glad that you have less symptoms of it now . All the best to you.

[starlightblue in reply to Dustyangel]

Hello Dustyangel,

Twelve years after radiotherapy which has caused years of serious bowel problems and bladder damage. I have recently started to have blood in my urine and am on a urgent pathway to find out what is happening, I already know that the bladder is covered with surface blood vessels (Telangiectasia) and there is an ''area of suspicion'' which is being investigated.

Obviously your posting attracted me and the treatment that you have been offered. It is likely that it will be at least three weeks before I get a full diagnosis and treatment plan but I will post the result when I get it. Meanwhile perhaps you could report on the response to any treatment you decide to have.

Best wishes to you.

[Dustyangel in reply to starlightblue]

Hi starlightblue

Thank you for your reply, I did see all the blood vessels in the bladder and the urologist did say that the vessels are fragile and they can bleed easily. My bladder does look sore! I did get a ct scan before being referred onto urology. I hope that your appointments go well and please do keep me updated on how you get on. I will also keep you posted on how this treatment helps or not .just waiting on them now to give me the appointments. Best wishes.

[Dustyangel in reply to starlightblue]

Hi starlightblue

How are you getting on? Are you any further forward with your investigations? Just to let you know I had my first treatment for my bladder yesterday with something called ialuril which is instilled into the bladder went well and no discomfort. I have another 1 a week for 3 weeks then 2 a month then 1 a month later , early days but she did say it can be quite effective so quite hopefull. Fingers crossed

[AlfredSaxon]

Hello Dustyangel

I am using hyaluronic acid to treat bleeding from the bladder, and have done so for about 3 years it has held the problem at bay. I had 3 episodes in which I was admitted to A & E because I had blockage due to blood clots--Clinicians do not warn patients about the severe damage caused by radiotherapy!! My story stated about 3 years ago and I was treated at Urology with a product called Cystistat, this is 50ml of clear liquid which is instilled into the bladder via a thin catheter, the procedure took about 10 minutes. I had 6 weekly treatments followed by 8 monthly treatments--it stopped the bleeding--I then went about a year without treatment and the problem came back although not as severe. I now use a product called Hyacyst which I instill myself, I use it at 6 weekly intervals having been instructed by Urology dept on how to do it --the kit required is a catheter and the product which is in a syringe--its working! about every 6 months I get a supply from my local Urology dept.Both Cystistat ( which is now replaced by Hyacyst) & H use a derivative of hyaluronic acid, and the accompanying instruction leaflet specifically quotes using it for Radiation Cystitis. I hope this helps and contact me if you have any questions

[Dustyangel in reply to AlfredSaxon]

Hi alfredsaxon

Thank you for your reply. I am glad to hear that the treatment is going well for you and it is reassuring me that it might work. I also ended up in A&E twice with a blockage because of the clots and the pain was unbearable they referred me back to gynaecology and I told them that it was not gynaecology I needed to be in! So long story short I'm now getting treatment from urology! Just waiting on the appointments to come through. I'm sure she said I will get treatment every 2 weeks then every 6 weeks but I can't remember. I wouldn't mind doing it at home at least I would feel less embarrassed. They certainly don't tell you all of the possible side effects that radiotherapy can cause ,it's like they keep it quiet until you go to them with problems my consultant just said yes it sounds like cystitis and that I can go buy a powder to mix with water to drink, 3 months down the line I have proper answers and it's like I told you something is wrong! I just hope the treatment works as I certainly don't want to go through all that pain again! Best wishes to you, and thankyou I will contact you again 😊

[AlfredSaxon in reply to Dustyangel]

Hi DustyAngel

Treatment every 2 weeks & then every 6 weeks seems about right. Your case highlights the weakness in the NHS service in that the clinicians you saw could not tell the difference between a gynaecological & a urological problem--you couldn't make it up!! I hope you get the treatment soon and can move on to self administration. My experience of Cystistat was preventing bleeding and soothing the bladder--the new produce should do the same. I'd be interested to know when you start the treatment and how you get on Good luck

[Dustyangel in reply to AlfredSaxon]

Thank you, I'll will let you know how it goes .

[Dustyangel in reply to AlfredSaxon]

Hi Alfredsaxon

Just thought that I would let you know I had my first treatment yesterday at urology with a gel called ialuril and all went well, it's going to be 1 a week for 4 weeks then 2 a month then another 1 month later, with what they said about it I am hopefull.

[starlightblue in reply to Dustyangel]

Hello Dustyangel and everyone,

Waiting for catheter removal and diagnosis following ridged cystoscopy under GA. The ialuril looks very interesting I will mention it at the consultation. Will update after appointment. Best wishes.

[AlfredSaxon in reply to Dustyangel]

Hi Dustyangel

I'm pleased to know that you are starting treatment for blood from the bladder; I looked up ialuril and found that it uses the same medication that is in the Hyastat (previously Cystistat) that I am using; i understand that it can be instilled as a gel but am at a loss as to imagine how that could be achieved! I hope you get a positive outcome---as far as I can tell there are no negative side effects from the product.

[Dustyangel in reply to AlfredSaxon]

Hi Alfredsaxon

Thank you for your reply, it's quite a simple procedure it's instilled via catheter, but have to try and hold it in for at least 30 minutes maximum of 2 hours... maybe by the end I will be able to hold in 2 hours !! No such luck at the moment !

[AlfredSaxon in reply to Dustyangel]

Hi Dustyangel

Try to avoid drinking for some time before you have the procedure, if you are able to get home fairly quickly lie down. I've was able to lie down within 30 to 40 minutes of the procedure as I was driven to and from the hospital--I now instill at home so am able to relax & lie down immediately. Good luck with the future procedures

[Dustyangel in reply to AlfredSaxon]

Thanks Alfredsaxon, unfortunately I just go to work after the procedure. I only have half a cup of tea in the mornings just to wash medications down . I will send a progress report a few weeks down the line . Best wishes