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 Pain for a year

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Strandsidemol



Posts : 64
Join date : 2016-02-15
Age : 39
Location : Leicestershire,uk

PostSubject: Pain for a year   Mon Feb 15, 2016 5:24 am

for a year now, my pain started begining of feb 2015, i have had urine frequency over 40 times on bad day. Been on urinalysis, had STI checks, ultrasounds, Cystoscopy, urologists, specialists all tests negative. 4 rounds of antibiotics & still feel bladder fullness, frequency, spasms pain in bladder/urethra, spasms in legs, tight buttocks, shooting pains in pelvis. Asked doc about pcr tests and embedded bacteria was not taken seriously. Ref Letter to Prof J M Lee in London was too late not taking on new cases. Pregablin taking edge off but problem still there.  It all started with what i thought was thrush/bv and a water infection. 1st symptoms started as lots of vaginal discharge, smelly urine, burning in vagina and urethra and cystitis. After all the antibiotics and tests and still cant piece together why my bladder and urethra feel like they on fire. I so desperately want to do the pcr level 2 tests so many have done and are recieving the right antibiotic and hopefully will get better.
Please help us all, everyones stories differ but i believe it is all due to embedded bacteria.

Update - been to see Dr Anderson had a broth culture and it is the same bacteria everytime that is cultured - Staphylococcus Epidermidis which i have been tol over and over again is a skin contaminant. Im starting to think it could be this, why would it happen 4 times now, i was so careful when i done tests, area cleaned etc. Sad


Last edited by Strandsidemol on Mon Apr 11, 2016 1:48 pm; edited 2 times in total
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Strandsidemol



Posts : 64
Join date : 2016-02-15
Age : 39
Location : Leicestershire,uk

PostSubject: Re: Pain for a year   Tue Apr 05, 2016 1:46 am

I am at my wits end with all, done a ton of research, spent so much money on tests and private dr's. I am actually scared to see my gp because of the way he makes me feel. Everyday i wake up thinking as it gone, but no the full bladder is always there and thats the least if im lucky. This is when i cry, everyday i have cried for my life for over a year now. Im desperate to work out what is causing this, test after test after test and nothing shows.
Today i have burning in my vagina/urethra, full uncomfortable bladder and it burnt so much to sit at work all day. I am fed up and feel like giving up. Im losing my whole life, i worked so hard to make.
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dantheman



Posts : 130
Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: Pain for a year   Thu Apr 07, 2016 9:07 am

I have spent thousands on different therapists, herbal remedies seen dozens of doctors and nothing. I think most people with IC find it very hard to accept this disease. Constantly looking for answers. Let's hope that this study provides some answers but it won't be a quick process.
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Strandsidemol



Posts : 64
Join date : 2016-02-15
Age : 39
Location : Leicestershire,uk

PostSubject: Re: Pain for a year   Thu Apr 07, 2016 1:32 pm

I will be cured mine by the time they firgure this out. Im determined to try everything to the max to get rid of whatever this is. Over a year ago i was well not had a uti in over 10 years then new relationship and bam all this starts happening... to co incidental i think, been tested over and over but nothing ever shows up. I am taking matters into my own hands now and trying everything all different theories etc. I will win
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dantheman



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PostSubject: Re: Pain for a year   Thu Apr 07, 2016 1:55 pm

I believe you will win. Many have and many will.
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Strandsidemol



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PostSubject: Re: Pain for a year   Thu Apr 07, 2016 2:51 pm

Its just at what cost Sad
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Strandsidemol



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PostSubject: Re: Pain for a year   Sun Apr 10, 2016 2:31 pm

Last night and this morning got that foul smelling urine back Sad i really want to know what on earth it is i have got because its driving me crackers Sad
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dantheman



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PostSubject: Re: Pain for a year   Sun Apr 10, 2016 3:57 pm

Could it be something you ate or drank
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Strandsidemol



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PostSubject: Re: Pain for a year   Sun Apr 10, 2016 5:50 pm

Water and salad... this smell is pungant. Chemical like is how i would describe it
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dantheman



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PostSubject: Re: Pain for a year   Mon Apr 11, 2016 11:42 am

I have noticed that some times i pick up the smell of the drugs that i am on like endep or any of the many meds im on so it's likely you can pick up a chemical smell.
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Strandsidemol



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PostSubject: Re: Pain for a year   Mon Apr 11, 2016 1:42 pm

Im on no drugs on herbals and supplements
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IC Queen



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Join date : 2016-04-13

PostSubject: Re: Pain for a year   Sat Apr 16, 2016 10:01 pm

Everyone's urine smells, check it out! We are just more tuned into it than others. I don't know anyone who has had IC for a long time who will let a urologist touch them. We will self cath with pediatric catheters, but that is it for now. Maybe when the cure comes.........?!!!? Hang in there everyone, I do know more than a few people who had really bad IC for a long time and then it just went away based on no treatment whatsoever. Interesting, but several then got really bad arthritis which they preferred to the IC.
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IC Queen



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PostSubject: Re: Pain for a year   Sat Apr 16, 2016 10:31 pm

Addendum: I do find it interesting (though very, very sad) reading the things I went through over 40 years ago, beyond desperate to find a cure. Some things that help me now: getting as much sleep as humanely possible, music- whatever your taste but generally more low key, eating lots of fruits and vegetables, especially dried beans and raisens (though believe that diet is different for all of us), good nutrition helps everything says this former nutrition professor, and most importantly...pain meds, pain meds, pain meds. You don't have to suffer for 30 years without pain treatment these days, the name has even changed to bladder PAIN syndrome. We must demand that our pain be treated while better treatments and/or a cure is found by people way more brilliant than me. I don't want to be a know it all, because I am still searching. But experience counts for something, been there, done that and all.
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IC Queen



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PostSubject: Re: Pain for a year   Sat Apr 16, 2016 11:03 pm

Addendum of my addendum and then I will shut up. Never known of the implanted pain devices doing more than causing problems for hundreds of IC pts who I call friends. Have been to more than a few pain doctors who only wanted to do this or refused to see me! I have enough problems without invasive surgery when I can easily take a pill. Family doctors, I have found....when they know you, can and will easily treat your pain. It may never go away, but it is a life changer. I was able to do so much more in life with a bit less pain...diversions to get my mind off the pain. I had to ask or find a better doctor. Being hysterical (as I truly was) never helped me, we have research and a name (BPS) that says we are in significant pain. Presenting myself in a serous way helped me to be treated more seriously. My mom advised me never to give advice, when my title was advisor!, so I will shut up now.
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dantheman



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PostSubject: Re: Pain for a year   Sun Apr 17, 2016 6:21 am

I'd like to take pain meds but any thing worth while taking causes real bad constipation. The universe hates me. It
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IC Queen



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PostSubject: Re: Pain for a year   Sun Apr 17, 2016 2:23 pm

Well you sure made me laugh with your one word response to my story. So the whole universe doesn't hate you. I guess some of us had diarrhea all our lives and the pain meds just kind of evened things out. I know constipation can be very bad, bad...just never a problem for me and other IC folks I know using pain meds. I used to say I hated everything and everybody...and asked why does God hate me? Maybe just intense suffering with no where to go?
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Strandsidemol



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PostSubject: Re: Pain for a year   Fri Apr 29, 2016 2:41 pm

Going on the raw diet... i really do believe there are so many causes to ic thats why no one can find answers and solutions the only thing that seems to work is radical diet changes so thats what im doing now
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dantheman



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PostSubject: Re: Pain for a year   Fri Apr 29, 2016 2:44 pm

Give it all a go. It's criminal that people are being driven nuts from this disease and the latest testing methods aren't being used. They should be throwing everything at it.
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Tina2



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PostSubject: Re: Pain for a year   Fri Apr 29, 2016 8:07 pm

dantheman wrote:
I'd like to take pain meds but any thing worth while taking causes real bad constipation. The universe hates me. It

Dan can you eat walnuts ? ( with no reaction ) If so a handful each evening does wonders for constipation.
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Tina2



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PostSubject: Re: Pain for a year   Fri Apr 29, 2016 8:16 pm

Well I am now about to try Lauricidin which is supposed to be the purifeid form of coconut extract.

It is supposed to promote a strong immune defence
Support a healthy gut bacteria
maintain healthy levels of yeast.

Seems expencive until it arrives, tiny little pellets and you only need a very small scoopful twice a day, so should last a while.

Will let you all know if anything substantial happens,
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Strandsidemol



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PostSubject: Re: Pain for a year   Fri Apr 29, 2016 8:24 pm

I think the lauracidin has helped me. The only thing it dont seem to work on is ecoli. Good for all fungus and good for digestion too
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Tina2



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PostSubject: Re: Pain for a year   Fri Apr 29, 2016 8:36 pm

Strandsidemol wrote:
I think the lauracidin has helped me.  The only thing it dont seem to work on is ecoli.   Good for all fungus and good for digestion too

Oh no I was hoping it would help my ecoli !
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Strandsidemol



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PostSubject: Re: Pain for a year   Fri Apr 29, 2016 8:38 pm

Check out the lauracidin advice faq page im pretty sure its only one that doesnt. Dnannose by bucket load with antibuotics for a biofilm infection xx
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Tina2



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PostSubject: Re: Pain for a year   Sat Apr 30, 2016 6:26 am

what are the best antibiotics for bio film ?
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Strandsidemol



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PostSubject: Re: Pain for a year   Sat Apr 30, 2016 10:23 am

Antibiotics clear up infection they may break up biofilm slightly but that takes ages you need enzymes to break up the biofilms. Serrapeptase, nattokinase and lactoferrin in combination will work well with an antibiotic that will work on your ecoli xx
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