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iwillsurvive

Registered: July 8, 2010
Posts: 118
Reply with quote  #1 
I'm wondering if anyone has had any experience with steriod (cortisone) injections in the bladder and/or urethra?

I don't have IC as such, I have chronic bacterial infections and also a chronically inflamed urethra. I'm seeing a new urogynocologist who has suggested having these injections in the bladder and urethra along with a local anaesthetic which she thinks will help with the inflamation and then in turn help clear the infection. I'm a bit nervous about trying something like this but then if it works it would be fantastic! I'd love to hear if anyone else has had this treatment as I'm struggling to find any information on it.

Icy

Registered: March 1, 2012
Posts: 428
Reply with quote  #2 
Hi  Iwillsurvive,

I have never heard of this procedure nor do I know of anyone having taken this. However, I would really find out very much more about this before you go ahead. Consultants are very good at suggesting all these procedures, often with little experience of how a patient really does after them - it doesn't matter to them - they just brush it off if things don't work out and you can be made to feel that you were the only person in the world it didn't work for! They are very good at that.

Steroids (corticosteroids)  in any form at all, whether it is sprays for the lungs, oral steroid medications, creams for the skin, mouth ulcer preparations, injections into mucous linings will all have a really bad effect on the good flora that protect all those areas. Steroids can bring down inflamation which of course can be an immediate relief however, the inflamation often will come back and being on steroids constantly is really to be avoided.

I think you need to find out much more about this whole procedure - ask for scientific papers on its success. Although patients don't realise it - they really have the right to question in depth the whole basis of these procedures and if the doctor will take responsibility for what happens if you have them done.  You do not want to be a willing guinea pig for this. Personally I do not like steroids at all of any kind and was actually warned off them once by a gastroenterologist! 

What other options has this doctor tried for you. How much have they actually gone into looking at your whole immune system, gastro system and where the inflammation is coming from?  Have you got hard evidence that these really are bacterial infections - i.e. names of bugs, written copies of results you had done etc.

Of course no one wants to turn down a chance for relief from this awful pain, but where steroids are concerned one has to tread extremely carefully. Just my opinion !
Maybe someone else on this board can give you personal experience.
ModeratorKate

Moderator
Registered: Dec 14, 2011
Posts: 1,029
Reply with quote  #3 
Hi
I found these links on the cob website, as we all know there are so many 'if's and but's'
no wonder,we get so confused.
Hope these and there relevant links maybe of help, and will give you some more facts for your next visit.
http://www.cobfoundation.org/search?query=bladder++steroid+injections&x=6&y=9

Good luck and do post back,as  personal information is always helpful for those looking in.

Regards
Kate


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iwillsurvive

Registered: July 8, 2010
Posts: 118
Reply with quote  #4 
Thanks both.

Ivy, I totally agree with you about the steriods, that was my first reaction as well and I'm definitely not going to go ahead until I can be sure it's worth trying. I will ask for some more informatiom before going ahead. Good suggestion re research papers.

Yes, I'm definitely sure it's bacterial. I've had problems for 11yrs now and whilst I don't get a positive bacterial result everytime, in the end it comes back generally with enterococcus. I try to get my sample done privately now as the NHS testing is very hit and miss and they won't check on low counts of bacteria. I have been seeing a urologist I really trusted who did the cystoscopy and discovered the urethral inflamation but he just doesn't know what treatment to try now so he referred me to this lady ureogynocologist. She is supposed to be one of the top people in the country dealing with women's health issues but after seeing so many different urologists in the past I struggle to trust any of them! I definitely want to try something else for the inflammation because I've tried most of the natural approaches and nothing has worked so far.

Anyway, thank you both for taking the time to post your suggestions, much appreciated.

JillB

Registered: Dec 19, 2011
Posts: 208
Reply with quote  #5 

Hi iwillsurvive

I don’t know whether you have come across this website, http://www.moonstar.com/~icickay/ but it was set up a long time ago  to inform women/men that an underlying chronic infection, not detected by standard testing, to be the cause of some cases of IC/RecurrentBC.  I see from your post that enterococcus is often found on your cultures and thought you might be interested to read about the treatment described on this site.  It does though involve antibiotics that must be taken for a very long period.   There is a practitioner in Washington who treats in this way and uses antifungals and probiotics to mitigate the inevitable side effects.  She uses broth culturing to isolate unusual bacteria and finds enterococcus comes up time and time again. 

I recently saw an NHS bladder specialist who now thinks and treats along these lines and has devised a very sensitive testing technique to isolate bacteria.  This is the first urologist I’ve seen (and I’ve seen loads) who understands, through personal research and evidence, that bacteria are capable of embedding deeply into the epithelial layers of the bladder safe from immune and antibiotic attack and that unless very aggressive treatment is employed over a long period the disease is unlikely to resolve. 

Wish you well     Jill 

iwillsurvive

Registered: July 8, 2010
Posts: 118
Reply with quote  #6 

Hi Jill,

Many thanks for your message. I haven't seen that website before but I'll have a look thank you.

It's interesting that you mention about unusual bacteria because I did get myself tested for Mycroplasma and Ureaplasma early last year by a doctor in London. I tested positive for Ureasplasma and took two courses of Doxcycline. Unfortunately I've been worse since this time not better. This could be coincidental, who knows. I have been thinking recently about getting re-tested for it though. I don’t know how it would come back as my partner also got treated as well (although he wasn’t infected). Is this the type of bacteria you mean or are their other strains?

It would be great if you could pm me the details of the NHS bladder specialist you saw.

Many thanks,

Jo

CheyenneP

Registered: April 20, 2012
Posts: 4
Reply with quote  #7 
Hi Iwillsurvive/Jo,

I had this treatment you describe done privately in December 2011 (multiple steroid injections into the bladder under general anaesthetic) and it was absolutely the worst 'treatment' I have ever undertaken. I was crippled with pain afterwards and unable to work for several months. I am still only on 'light duties' and back on medication and acupuncture to help with the pain caused by this procedure.

My background - I had had multiple bacterial infections which eventually turned into IC and I have tried many treatments in the last ten years.

Please please think carefully before undergoing this treatment. Without wanting to sound alarmist, it has ruined my day to day life as I know it. I am unable to excercise, have sex, or work to my full capacity. I regret it more than anything.

I hope you find some way to help your situation. I know how tempting it is to be seduced by a miracle cure.

Good luck.
iwillsurvive

Registered: July 8, 2010
Posts: 118
Reply with quote  #8 
Hi CheyeneP,

I'm so sorry to hear about your bad experience. The feedback I'm getting here is really making me think these injections aren't the way forward. I really appreciate you commenting on my post. It's hard as the urogynocologist I saw was very insistent that this was the best treatment I could have but I don't want to take any risks so I think I'll try to get a another opinion.

Many thanks again for your feedback and I really hope you make a recovery after your bad experience.

Jo

iwillsurvive

Registered: July 8, 2010
Posts: 118
Reply with quote  #9 
Hi CheyeneP,

Out of interest, which specialist did you have the injections with? I know we're not allowed to post names on here but if you wouldn't mind sharing who you saw then please could you send me a private message.

Many thanks!

Jo

CheyenneP

Registered: April 20, 2012
Posts: 4
Reply with quote  #10 
Hi Jo, have sent you a private message.

mafe

Registered: May 13, 2012
Posts: 7
Reply with quote  #11 
Well, my urologist Suggested this procedure to me years ago. For one, there just isn't enough research on the effectiveness of this treatment for IC and inflammation. Also, my insurance company BCBS agrees and will not even cover this procedure/surgery. Oh, but they will cover for the Interstim device, go figure. I will say though that 2 years ago I probably would have tried anything to get some IC relief. The hydrodistenions and installations work for me now though (at least to get some relief).
orionsbelt

Registered: Aug 10, 2010
Posts: 11
Reply with quote  #12 
I have had steroid injection for epididymitis and it was fantastic. The first one all but completely cured it and the final and second one some 9 months later finished any pain off completely.
Ive been suffering from Chronic Urethritis for last 4 years(possibly IC but no mention from doctor) and I am going to ask for a steroid injection into Urethra,not bladder as it cant possibly be any worse than chronic urethral pain and frequent and painful urination over this time.

Im a male of course so may be quite different for females.
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