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Trying to get bladder issues diagnosed since 2013 Watch

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    hiwas wondering if anyone could shed light on this In 2012 I used to get UTIs - all cleared with antibiotics - except for one that persisted - I visited GPs a thousand times - who eventually referred me to urologist - was told then apparently I had interstitial cystitis - my symptoms were not too bad - so I declined any treatment they offered me - but they threw aggressive powerful medication at me - without even considering me as a person who has other health issues..anyway fast forward to 2015 and suddenly I had acute onset worsening of my symptoms without any reason - and my bladder frequency and pain suddenly became severe It has stayed that way for 18 months now - gets worse when I have my period (is my hormones the issue here ?) and improves whilst not on period - but still not normalI moved to uni in sept - up north - where obviously I managed to get a LOT of tests done under NHS - as less people up north I had cystoscopy again + had my bladder capacity measuredI was told I was misdiagnosed with IC - my bladder looks absolutely fine - my bladder capacity is fine - and it empties itself normally - and they essentially can't tell me what is wrong with me - as everything is normal and there is no abnormality my other General history includes:IBS - which also worsened 18 month agohad optic neuritis 2.5 years ago (not diagnosed with MS or any other autoimmune disease)every blood test or any test whether it is MRI - CT- ULTRASOUND - is NORMAL for me I am going back to GP *(now back down south so going to a clueless GP who I have to present my notes to..)how can I get doctors to take me seriously and do something for me as for them the buck stops for them as every test result is NORMAL....
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    (Original post by Anonymous)
    hiwas wondering if anyone could shed light on this In 2012 I used to get UTIs - all cleared with antibiotics - except for one that persisted - I visited GPs a thousand times - who eventually referred me to urologist - was told then apparently I had interstitial cystitis - my symptoms were not too bad - so I declined any treatment they offered me - but they threw aggressive powerful medication at me - without even considering me as a person who has other health issues..anyway fast forward to 2015 and suddenly I had acute onset worsening of my symptoms without any reason - and my bladder frequency and pain suddenly became severe It has stayed that way for 18 months now - gets worse when I have my period (is my hormones the issue here ?) and improves whilst not on period - but still not normalI moved to uni in sept - up north - where obviously I managed to get a LOT of tests done under NHS - as less people up north I had cystoscopy again + had my bladder capacity measuredI was told I was misdiagnosed with IC - my bladder looks absolutely fine - my bladder capacity is fine - and it empties itself normally - and they essentially can't tell me what is wrong with me - as everything is normal and there is no abnormality my other General history includes:IBS - which also worsened 18 month agohad optic neuritis 2.5 years ago (not diagnosed with MS or any other autoimmune disease)every blood test or any test whether it is MRI - CT- ULTRASOUND - is NORMAL for me I am going back to GP *(now back down south so going to a clueless GP who I have to present my notes to..)how can I get doctors to take me seriously and do something for me as for them the buck stops for them as every test result is NORMAL....
    Unfotionately I don't have any specific advice, but as far as being taken seriously just don't back down and keep saying how bad it is for you. Ask to be refered to a urologist straight away given that you've already had a bunch of tests that have come up with nothing.
    My only thought is that it could possibly be something gynocological which is spreading to affect your urinary tract. Might be worth asking about.
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    Thanks for the reply

    I did see this trainee gp who relumctantly referred me back to urologist.the iromy in seeking a second opinion from someone who misdisgnoeed you but im not seeing same comsultant

    Ironuvally i dod see see a gymea doctor up north as i hsd ovariak cyst which weny awau and they checked me extemsively and said everuthing id find mormsl

    No point in going private atm as i neec someone with specific expertier on complex cade such as mine and will onlu do necessary tests...amd not rip me off

    All i know is that it goes worse on period but gp sais im too young to have hormone isdues

    Pain always in urethra area and bladder not vaginas uterus area ...

    All iv seen on internet is posdiblt old uti deep seated in bladder lining wfich never quite webt away and hence not pickrd up standard bacteria culture

    Unfortunately the only professor who deals with this theory is out of area hence cant be referred there under nhs
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    Endometriosis is plausible - mention the symptoms to your GP as being monthly and ask for a referral, or try the pill to see if it helps. Could be part of your IBS too - IBS symptoms can be worse with periods, and can extend to the GU system. Unlikely to be MS etc if the bladder empties normally.

    Btw, i get you're pissed. But with the number of referrals and expensive investigations you've had you can't say that they aren't 'taking you seriously'. And what can they do if they have tried medication that you refused, and there is nothing to find on any investigation?

    I doubt it is a 'deep seated infection in the bladder' - that seems like crazy talk and there would have been some evidence of it in blood tests or cystoscopy or urine sample.

    Maybe, since you're pissed with the NHS, you should just take the plunge and go private. I know you said you don't want to, but sometimes if your convictions are that strong despite the evidence that you're not being taken seriously and having enough investigations you have to risk being 'ripped off' by someone who will just do whatever investigations you want to be done. You never know, you might even be right.
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    (Original post by haprybeingright)
    Endometriosis is plausible - mention the symptoms to your GP as being monthly and ask for a referral, or try the pill to see if it helps. Could be part of your IBS too - IBS symptoms can be worse with periods, and can extend to the GU system. Unlikely to be MS etc if the bladder empties normally.

    Btw, i get you're pissed. But with the number of referrals and expensive investigations you've had you can't say that they aren't 'taking you seriously'. And what can they do if they have tried medication that you refused, and there is nothing to find on any investigation?

    I doubt it is a 'deep seated infection in the bladder' - that seems like crazy talk and there would have been some evidence of it in blood tests or cystoscopy or urine sample.

    Maybe, since you're pissed with the NHS, you should just take the plunge and go private. I know you said you don't want to, but sometimes if your convictions are that strong despite the evidence that you're not being taken seriously and having enough investigations you have to risk being 'ripped off' by someone who will just do whatever investigations you want to be done. You never know, you might even be right.

    I have alresdy been seen by gynaecological doctor and theyve had a look and they've told me i dont have endometriosis

    Erm im the patient and to me it feels exactly like an infection in fact professor malone a doctor. ..has tested plenty of women who were negative for infection wjth NHS anc it turned out they did have bacteria in their urine. ..aka chronic infection that never went away. Goimg to him eventually as i need to be sure that i defo dont have infection since the irony is that sll of this started when one acute infection no longer got better on antibiotics. .

    Im not debating doctors not taking me seriously because omg they've done so mamy tests. .

    Im saying that when my symptoms suddenly gey severelu worse they basically dont even consider just listeninh to me just because someone 6 months ago diagnosed me as mormal

    Ita as if the present doesnt matter if past says yes all normal

    And i have brought up the issue of periods before with gp and they completely jusy ignored me so im seeing a different gp today to have a chat about my issues

    Jusy because someone does not have life threatening symptoms does not meam they deserve to suffer a poor qualitu of life for years becsuse they're not dying
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    Ps

    I do have blood in my urine on and off ...

    Have had ovarian cyst that went away

    I feel that my problem is actually simple like infection
    And that everyone including me is making it more complicated.
 
 
 
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