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ddj42

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Reply with quote  #1 
I had my second consultation with the Prof yesterday and it is bad news. My urine sample is now completely clear and I have been diagnosed with "chronic bladder pain". 
I should have asked all sorts of relevant questions but was probably too shell shocked to think clearly. Can someone help?

- is chronic bladder pain just another word for interstitial cystitis? Or is what I have some sort of residual inflammation? The Prof's literature says repeatedly that the inflammation can linger long after the infection has cleared. This scenario is my only hope.   

- I have to continue the antibiotics (Nitrofurantoin). Why, if the infection has gone? 

- I have to start Hiprex

- I have to start Amitriptyline. I am very concerned about this a) because it seems to confirm the diagnosis of c.i.  and b) because the side effects seem awful. 

If any of you is in the same circumstances (acute uti morphing into "chronic bladder pain" after a few months), I would be grateful if you could get in touch. 

Thank you, 

Diane



Moderator_Jen

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Reply with quote  #2 
How long have you been experiencing bladder pain for? What other symptoms are you experiencing?

In response to your question, no, chronic bladder pain is not the same as Intersitital Cystits (IC). When the prof says you have chronic bladder pain he is most likely describing a symptoms not the cause. He is saying that you are experiencing long term balder pain and you can experience this for a multitude of reasons. However your pain could be attributed to inflammation from an infection and if so it's very possible that amitripyline could be very helpful to resolve this.

Amitripyline is a dual role drug, in higher doses it works as anti depressant. In low doses it works well as a pain relief. Amitripyline is very effective for reducing/eliminating nerve pain for some patients and a lot of patients respond well to it.

He has probably kept you on the anti biotics to ensure the infection does not return and has been fully erridicated.

If your main symptom is pain and the prof feels that he cannot offer any further treatment to resolve the pain then it is worth speaking with your doctor and asking for a referral to a urologist to rule out IC or a referral to your local pain team to see if they can help you find a pain relief regime that is effective towards your bladder pain.


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ddj42

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Posts: 22
Reply with quote  #3 
Thank you Jen. Your answer has already helped me a lot, particularly your explanations about the medicines. 

The whole story started 4 months ago as acute cystitis. My main symptom is the constant urge to urinate. This fluctuates all the time: it can be strong to very strong (driving me up the wall) or light at times (not often). I have almost no pain as such, except occasional vaginal pain (can be quite strong) and an intermittent pain in my left thigh/buttock which appeared in the last two weeks or so. I only used the word "pain" in my previous post because this is what PML said he used for a whole range of symptoms, including mine. I find the vaginal pain and thigh pain a lot more bearable than the urge to pee. I also have almost daily bouts of extreme exhaustion. 

The urge to urinate is always made worse by voiding. In fact, I usually feel "at my best" in bed in the morning, when my bladder feels normally full but not in an uncomfortable way. My bladder capacity is about 200 to 300 ml during the day, closer to 400 (sometimes a bit more) first thing in the morning. I know these are normally good signs which go mostly against CI symptoms (no true bladder pain, no relief after voiding, reasonable bladder capacity, more comfortable when bladder full) but I have read about different types of CI for which these are not excluding symptoms. So I can't be sure. 

And if what I have is only inflammation, why is it taking so long to go away? PML seemed to imply it would take months, a year even, or more? I know people are different but a friend of mine with an identical story (no infection, only symptoms) had a very sudden improvement: she went from bad to cured in 24 hours after a shorter period on antibiotics than me.  

They perhaps don't sound like much but my symptoms are debilitating and I am virtually house bound. I would very much like to find someone with a story that is similar to mine (acute cystitis, infection clearing relatively quickly, lingering symptoms) and ask them what they think is wrong with them. Just to be absolutely clear, I have two main concerns: a) is it inflammation or CI and b) if it is inflammation, based on other people's experience, what can I expect? 

I would be very keen to know what you think as well, given your experience.

Many thanks, 

Diane



 


Sarah1975

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Posts: 27
Reply with quote  #4 
Hi Diane
I can't offer much in the way of advice but I am similar to you in that my problems started with an actual bacterial infection (first ever in July 2016) that cleared in 3 weeks but left me with stinging just before voiding. Numerous pointless GP visits ensued, then one evening, a couple of months later, I went for a run and came back with the terrible urge to urinate, this feeling didn't really improve for months and I developed burning on my pubic bone area.  I started treatment with Dr. A and have been on Nitro for 4 months, the urge has improved somewhat but the stinging hasn't changed, I'm thinking of getting another broth culture done.  I absolutely feel for you with the urge, mine was always worse about 10 minutes after voiding and a full bladder always felt better.  This urge has improved since the beginning but I still get it or just a fuzzy irritated feeling in my bladder.  The urge means you just can't think about anything else, people say just do something to take your mind off it, if only it were that simple!  These last few weeks I've also started getting a bit of urge incontinence which I didn't have before.  I'm still hoping that it will all get better eventually but the longer the time goes on the more difficult it is to stay positive.  I'm also seeing a urologist who has done various scans which were all normal.  The next step is an MRI on my urethral area to see if that picks anything up which might explain the urethral/bladder neck stinging.  After that it would be a cystoscopy which I'm nervous about and may put off for a while just to give things more time to settle.  The Uro agreed with me about not having a hydro as I don't actually have bladder pain as such.  Please stay in touch and private message me if you wish, I'm taking various supplements which I'm happy to share with you.
best wishes
Sarah 
Moderatorsusan

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Reply with quote  #5 
Sarah

I'm not sure when you are next seeing or speaking with Dr A but it may be worth discussing these new symptoms with her. I'm not sure how old you are but if you are in your 40s or 50s the role of oestrogen cannot be discounted from bladder symptoms including urge incontinence. Dr A has training in female hormonal problems and it overlaps with her specialism in chronic bladder infections. I'm also uncertain if you have had a family but the pelvic floor does weaken as we age so you may want to discuss possible pelvic floor therapy with her - I've attached a link with more info.

I've also attached a link which has some basic information about the lessening of oestrogen in the vaginal and urinary tract area as hormone levels decrease.

http://www.pelvicphysiotherapy.com/bladder-disorders/

http://www.bladdermatters.co.uk/content.php?id=164g%3D2%2FRole-of-Estrogen

Moderator_Jen

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Reply with quote  #6 
Any bladder symptoms are so difficult to deal with and are greatly life impacting so I understand your frustration and desire for answers. I really wish I could give them to you but sadly there is no set rules for bladders. They love to be unpredictable and refuse to follow logic or rules sadly.

I honestly can't say why some people bounce back from an infection with great ease and others, like us, go through hell and suffer the most horrendous and debilitating side effects.

What I have learnt is that listening to your body and learning what it does and doesn't like can help reduce/control bladder issues. Diet can play a huge part in reducing and flaring bladder symptoms. A lot of people try different things such as medications, alternative treatments and therapies such as acupuncture or meditation.

There is a lot of information about the above on the main Bladder Health UK website.

Hope the above helps x

__________________
Bladder Health U.K. Forum Message Board Moderator.
Kent Support Group Co-Ordinator
Special interest in supporting those with Interstital Cystitis, Fowlers Syndrome and those who have bladder issues in Kent.

Please support Bladder Health UK by become a Bladder Health UK member  - click here for more details: http://bladderhealthuk.org/membership
Sarah1975

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Posts: 27
Reply with quote  #7 
Thanks Susan, I'm 42 and I've not had children.  I did wonder if I might have some pelvic floor issues as I'm pretty tensed up most of the time although I guess this would have the opposite effect on my urge incontinence.  Also my periods have been all over the place the last few months, I think brought on by anxiety so my hormones could well be out of kilter and there's the possibility that I'm entering the peri menopause.  I'll have a look at the links you've sent.  I'm emailing an update to Dr A today so will inform her of the recent issues.
Thanks again
Sarah 
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