Forum: General Topic Forum ]]> http://cobf.websitetoolbox.com/post?id=6389353 Mon, 17 Jun 2013 10:56:10 GMT http://cobf.websitetoolbox.com/post/Finally-diagnosed-6384602 Forum: Interstitial Cystitis/Painful Bladder ]]> http://cobf.websitetoolbox.com/post?id=6384602 Thu, 13 Jun 2013 13:21:18 GMT http://cobf.websitetoolbox.com/post/NHS-Antibiotics-a-quick-fix-6383757 I've posted on here before.
But basically, I've had on going cystitis since i was 16 - (and I'm 22 now) - which was caused by infections - usually after sex, every time. we tried to use lube,I peed before and after, but still I kept getting infections after infections.
The doctors kept telling me it was all 'in my head' but finally i got referred to a specialist and had a cystoscopy and they said when my bladder fills it bleeds and most likely said I have interstitial cystitis - even though some of my flare ups i've had bacteria present - but they can never be 100 percent. I'm antibiotics 24/7 ( timethoprim )which keeps it at bay. Sometimes a flare, or what I understand to be a flare comes on randomly and I am in agony, during when i urinate and after. I feel like my bladder is completely inflamed. The only thing I find helps is A REALLY hot bath. but it hurts so bad that sometimes I feel like going to A&E or calling an ambulance... I don't know if that would be a lame excuse? But the pain does feel really intense - I'd say about a 10. A lot of people say that labour is more painful that this condition, and that I can believe. i just cant believe there isn't any pain medication I have been offered or anything I am awear of.

My specialist says the only 'cure' really is for my to get pregnant and then after birth I should be cured? I don't know if this is just a theory but he said for a lot of people in my position it cures them... I do want to be a mum in the near future but not yet.. then that also brings me on to the worry of if actually during pregnancy I will be agony as the baby will be pushing on my bladder.

So much worry and so many questions which I dont feel like Have been answered. 
It seems a quick fix to be on antibiotics so the NHS just keep handing them out to me..

I'm tempted to go private because the NHS just seem to be cutting so many corners.

Forum: Interstitial Cystitis/Painful Bladder ]]> http://cobf.websitetoolbox.com/post?id=6383757 Wed, 12 Jun 2013 20:46:11 GMT http://cobf.websitetoolbox.com/post/Support-our-Fundraiser-Mandy-O-Shea-6383006
17th July - London to Paris Cycle
Mandy will be cylcing 265 from London to Paris.
This absolutely gruelling journey has taken Mandy months of training overcoming her pain issues.

You can find out more and make a secure donation on her page:
https://mydonate.bt.com/fundraisers/mandyoshea1

All donations made through the site are secure with 100% going to the COB Foundation


Saturday 6th July - Dinner at Crowne Plaza, Leeds
Why not enjoy a night out with a fabulous 3 course dinner?
The great evening out is just £39 including half carafe of wine, coffee and dancing.
All proceeds given to the COB Foundation.

Please contact Mandy directly for more information:
mandysweeadventure@gmail.com

Forum: General Topic Forum ]]> http://cobf.websitetoolbox.com/post?id=6383006 Wed, 12 Jun 2013 09:04:51 GMT http://cobf.websitetoolbox.com/post/New-Here..-6382371 After suffering in silence for over2 yrs i finally went to my doctor,who refered me to see a specialist.. They discovered that my bladder wasn't emptying properly so arranged for me to have an operation to stretch my bladder which would rectify the problem... It didn't!!! I have had urodynamics twice, the 1st time was a bit of a disaster as i couldn't pass water (even though i was bursting) when they wanted me to.. Anyway's the gave me tablets to try (can't remember the name).. I took them for a month with the most awful side effects before my doctor brought me off them as there had been no improvement, and said it was pointless me suffering the side effects as they weren't going to work.. I went back to the specialist who sent me for urodynamics (with  a view to botox).. I will try anything i am so sick of putting up with this!!!
Went for urodynamics last week, it was awful,the woman said there is nothing wrong  (i would like for her to live a week for me and then tell me there is nothing wrong) She said botox would be of no use, but wanted me to go for physio for pelvic floor exercises she said this cures 75% of overactive bladder sufferers?? I also have an appointment to learn how to self catheterise!! Don't ask me why, i have no idea!!
Has anybody else been in this situation that has been relieved of this god awful problem??

Sorry for the long post and the rant  Sparky

Forum: Overactive Bladder Syndrome ]]> http://cobf.websitetoolbox.com/post?id=6382371 Tue, 11 Jun 2013 20:29:30 GMT http://cobf.websitetoolbox.com/post/panic-attacks-6381861 am so low

Forum: Interstitial Cystitis/Painful Bladder ]]> http://cobf.websitetoolbox.com/post?id=6381861 Tue, 11 Jun 2013 14:11:48 GMT http://cobf.websitetoolbox.com/post/Biofilms-and-chronic-infection-6380745

Has anybody come across any theories that explain why most people do not end up with chronic UTIs?   Given that doctors offer the same courses of antibiotic to all patients with cystitis, I wonder what factors, in most people, stop the survival of persisters – these are the cells that are thought largely responsible for high levels of biofilm tolerance to antibiotics.   There are, to my knowledge , a couple of physicians in the UK who believe that you need to keep a killer dose of antibiotics constantly in the system  to knock out bacteria that periodically leave the biofilm. These ‘troops’ are sent out to replicate in order for the colony to survive. These physicians maintain that if the colony can’t replicate, then the cells within the biofilm will eventually die as they reach the end of their lifespan. 

During my early 30s I suffered for several years with recurrent infections. I don’t believe any resistances occurred and I don’t believe a biofilm formed.  I took low dose antibiotics and at the end of one of the periods of this regime the attacks stopped altogether.  I have always wondered if the antibiotics caused this cessation or if my body worked to bring about a resolution. During the following years I suffered very occasional infections until I reached 60 when it all started again. This time multi-resistances developed within a few years and I found myself with very few options. I am pretty sure that I now have a
biofilm(s).   Most postmenopausal women’s bladder infections do not become recurrent; could this mean that, for some of us, hormonal factors switch off the immune response to certain bacteria?   Maybe hormonal factors disturbed my immune response during my early 30s – a peak time for women to have recurrent cystitis (as is the early 60s).   

As chronic cystitis leaves the bladder vulnerable to further infections,  my Chinese doctor firmly believes that healing the damaged bladder a priority in dealing with this disease.  Since starting traditional Chinese medicine all resistances have gone, but alas not so far the infections.  Thankfully the symptoms are now well controlled which means the bacteria are gradually weakening. 

Jill   

Forum: Cystitis ]]> http://cobf.websitetoolbox.com/post?id=6380745 Mon, 10 Jun 2013 18:36:37 GMT http://cobf.websitetoolbox.com/post/Phages-locked-thread-6380210 I am appalled that the Antibiotics and Resistance thread has been locked.   The use of phage therapy is becoming well known in certain sectors of medicine, and it is also well known that phages are found in sewers.  If a member of COB wishes to discuss how he would isolate phages, it is plainly not a recommendation, implicit or explicit, for others to go and do the same.  Preventing this discussion is challenging his right to freedom of expression.   What he said is not illegal, not discriminatory and is of great interest to me and perhaps many others.    It is exchanges and ideas like this that are the life blood of good debate.  

Forum: General Topic Forum ]]> http://cobf.websitetoolbox.com/post?id=6380210 Mon, 10 Jun 2013 09:55:03 GMT http://cobf.websitetoolbox.com/post/Long-Term-Antibiotics-6379329
Have been on antibiotics now for 2 months & was wondering if anyone has had any success with this treatment option?

Thanks

Forum: Interstitial Cystitis/Painful Bladder ]]> http://cobf.websitetoolbox.com/post?id=6379329 Sun, 09 Jun 2013 16:49:19 GMT http://cobf.websitetoolbox.com/post/Furadantin-6378358
I posted a week or so ago about a really prolonged bout of BC... Finally it did go.

I'm on hols at the moment in Portugal and I've just been in the pharmacy and asked them whether they sell over the counter antibiotics. They given me a box of Furadantin 100mg. My plan is to keep these for any emergency BC outbreaks (which are usually once a year/18 months). My regular UK dr is extremely slow at prescribing and my dip tests usually show negative (but the the culture test then usually shows positive) - and I've had some real horror shows over the last 3 decades, dealing with drs who almost get the hump about the fact that I pretty much know what I've got as soon as the symptoms appear :\

I'd like to hear anyone elses experience with Furadantin, if anyone has taken it. The pharmacy gave me a box of 50 (14 would be a 7 day course) - and the cost was 10 euros. If they are effective, I'm literally going to be over the moon

The pharmacist here described Furadantin as an 'antibacterial', but when I look online, all info says it's an antibiotic.. Sounds silly, but are the two the same thing, I wonder.

Thanks in advance for any experiences anyone has had with this drug.

Jo

Forum: Cystitis ]]> http://cobf.websitetoolbox.com/post?id=6378358 Sat, 08 Jun 2013 19:15:28 GMT http://cobf.websitetoolbox.com/post/Bladder-Stoma-6377430
Please can anyone give me any advise, I have a Mitrofanoff at the minute which has now failed for the second time. I Been offered a Bladder Stoma in about 6 to 8weeks for surgery. Can anyone tell me much about the operation?
How long does the surgery take? Did you have to have a NG tube? What are the best stoma bags? have you had a problems since the surgery? Can you have kids? as with the mitro I was told not 2........  The uro I saw said he did not want to take the bladder out because it can affect sexual function they only like to remove it when you have cancer? If anybody can help me out I would be really thankful. I hso many questions I forgot to ask.......
Hugs Emma

Forum: General Topic Forum ]]> http://cobf.websitetoolbox.com/post?id=6377430 Fri, 07 Jun 2013 22:03:44 GMT http://cobf.websitetoolbox.com/post/Burning-in-bladder-6377335 So Im sitting here so scared because I cannot live with the pain as he has suggested, who do you turn to, am so desperate
god help me

Forum: Interstitial Cystitis/Painful Bladder ]]> http://cobf.websitetoolbox.com/post?id=6377335 Fri, 07 Jun 2013 20:32:05 GMT http://cobf.websitetoolbox.com/post/vesicare-help..-causing-leaking!-6374418 Forum: Overactive Bladder Syndrome ]]> http://cobf.websitetoolbox.com/post?id=6374418 Wed, 05 Jun 2013 19:43:45 GMT http://cobf.websitetoolbox.com/post/do-i-have-oab-6372987 .....doctors were no help and told me to take tablets (didnt help) and excerise (i do) and pelvic floors (done for years) basically told im too young to have oab? please if anyone has any tips or any advice to help itd be very much appreciated. This has made me depressed and not to mention the pain. Thankyou for reading. X

Forum: Overactive Bladder Syndrome ]]> http://cobf.websitetoolbox.com/post?id=6372987 Tue, 04 Jun 2013 21:01:23 GMT http://cobf.websitetoolbox.com/post/Chronic-pelvic-pain-6369348
It's been awhile since I have been on here, hope you are all keeping well.

I need some advice due to the fact I seem to be in chronic pain round my pelvic region (feels like chronic period pain).  I have just recently had a course of antibiotics due to a UTI.  Any help would be grateful.

TracyJune

Forum: Interstitial Cystitis/Painful Bladder ]]> http://cobf.websitetoolbox.com/post?id=6369348 Sun, 02 Jun 2013 13:11:30 GMT