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Sarah1975

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Posts: 29
Reply with quote  #1 
I seem to have a range of odd symptoms which started with a confirmed UTI last July.  Most of my problems seem to be urethral or at the bladder neck.  I have no pain with urine in my bladder as such and no aching but when I get the urge that makes your bladder contract I get a really sharp sensation very low behind my pubic bone, its as if there's a sore about the size of a 10p and the muscle contraction squeezes it producing a sharp, stinging pain that lasts a couple of seconds.  Sometimes turning in bed or bending produces the same sensation but only when there's urine in my bladder, its always in the same spot.  It's the movement that produces the pain and it's over in an instant.  Does anyone have anything similar? I've been scouring the internet for months but can't find anyone describing anything like this.  Just as I'm about to urinate I have the same sensation too, like the action of moving the muscle squeezes the 'sore' making it hurt.  I also get a pin prick feeling externally in the fleshy area just below my urethral opening occasionally.  My uro wants to do a cysto but I'm nervous this will make things worse.  I don't flare as such, it's there all the time.
jeananne

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Posts: 227
Reply with quote  #2 
I have read your post and in some ways it appears to be in the same area that we share pain. I was diagnosed with OAB and at the beginning I was in and out of the toilet all day and night.  I was advised to have a cystoscopy to see what the cause was and then I think I got worse.  The trouble is I was prescribed Detrusitol after this axamination because my bladder was given the "all clear". I do not know how long I kept taking this medication but eventually I was told to come off it as this was probably the cause of what was now "pain".  Once this had left my body, I was straight away back to the loo all day so was then treated with Vesicare.  All this happened 11 years ago and I am still in pain very much like you are experiencing.  Just at the point wher bladder joined to the urethra, I hurt.  sometime pain acute and most of the time it is sore.  I now know that all the medication was adding to the ploblem of pain but how can you live with a bladder that constantly makes you pee.  I am now trying the vaginal hormone cream in the hope that dryness may cause the soreness in the urethra as I understand if used continually, it helps the whole area down below.  While you decide on whether to have the cystoscopy, why not ask for the cream, it cannot do you any harm.  My pain has aways been set off by the act of doing a wee.  But I have never find a doctor to say they understand why.  Good luck and let me know how you do.  Jean
Hannah123

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Posts: 20
Reply with quote  #3 
Hi Sarah1975,
My pain has been identical. I have now improved a lot with 2 types of treatment.
One from the Prof for a biofilm uti, which is working.
But secondly, the pain upon movement such as bending over, turning in bed, initiating urine flow, (like a scorpion sting down the left hand side of my urethra), this was found to be from a rotated pelvic bone!! Ie: iliac crest on one side of my pelvis was rotated forward and the symphysis pubis on the same side had rotated backwards. My physio was the only one who discovered this. She working to reallign my pelvis month on month. After the first session this symptom improved by about 75%. Do you get pain in either sacro- iliac joint at the back of your pelvis? this rotation was causing mine to hurt too, but that's just about gone with the physio. It's a long process, I'm a few months in and cannot do any physical exercise or hoovering etc yet because it sets things off, but I can now bend and turn over in bed and do a lot more movements without triggering that pain atall.
The physio found trigger points in the quadratus lumborum muscle which goes into spasm and sets off the pain, so it's worth getting this checked too.
I didn't ever have an injury or trauma to the pelvis so I cannot detect when this happened.
It took a long time for me to work out there were two different sources to my pain as they are so intertwined and started at similar times to my initial acute uti began and never went!
It may be a long shot, But it's worth you getting good physio to check you over [smile]
Sarah1975

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Posts: 29
Reply with quote  #4 
Thanks so much for replying, I thought I was the only person with these symptoms.

Jean - I'll be asking my GP about hormone cream, as you say it's worth a try.  I also found that coming off Amytriptyline lessened the pain a little for me, I think because the muscle contractions I get with a full bladder weren't quite so strong when off the medication.

Hannah - I'm also convinced I have a biolfim infection after a broth culture showed enterococcus and e coli, I was on Nitrofurnatoin for 11 weeks and although this helped with the urge to pee with an empty bladder feeling it never did anything for that 'squeezing a sore' feeling I get.  I think I need a stronger tissue penetrating drug, I've just sent another broth culture so I'll see what the results are and ask for a different antibiotic I think if something shows up.  Can I ask what antibiotics you are on now and to what extent they've helped with the 'sore in the bladder' feeling?  Also did you get referred to a physio through your GP? I'd certainly like to try that route as I feel everything has tightened up due to the pain.  Please private message me if you like.

Many thanks
Sarah
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