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MollyB

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Posts: 187
Reply with quote  #1 
Hi,
I haven't posted for a while but I am still the same.  It is over a year now and the 24/7 urge to pee has never ever gone away for a second and I find it unbearable.  I am aware of the two Drs talked about and am about to try ABx again even though I reacted very badly to them before but I am finding it impossible to have any sort of normality of life with this horrendous "feeling" 24/7.  
The reason for my post is to ask if there is anyone on here who found out that this "feeling" was linked to back issues?  I have a bulging disc pressing on a nerve but have been told the two are not related.  I feel that the nerve pressing results in me not being able to empty full and thus I do get infection even if they are low level and not picked up by NHS testing.  I literally pee teaspoons out night and day and have never had a normal stream or passed any significant amount for over a year.  I  drink one a half litres of bottled water in a day otherwise the pressure can also get too much.  I went to a new GP who still refused to refer me to a private spine/neuro person to check my MRIs out so I am wondering if anyone has found their back was linked to their bladder problems and if so who did they see or what treatment did they seek.  Physio? Chiro? Osteo?  
And like so many I have not had a full night sleep in so long I have forgotten what it is like. I nod off in chunks here and there and take what sleep I can get when I can get it. 
I have stuck to the IC diet to the letter and I am gluten, sugar etc free and do not cheat. Again I have the same boring meals day in day out. 
This illness is slowly sapping me of my life and I would be interested to hear from anyone who in a similar situation with a back issue. My MRI says the disc protrusion contacts both the L5 nerve roots.
Many thanks for reading this. xxxx
ModeratorKate

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Posts: 1,590
Reply with quote  #2 
Hello MollyB
Sorry to read of your ongoing problems,that are still causing you so much discomfort.

I have several discs trapping nerves up and down my spine, which plays havoc with internal organs,The spine will never recover,but I personally find that manipulation of the spine does release some  of the pressure,
I visit a Chiropractor regularly,and I am fortunate that my own GP does manipulation.The Chiro treats the whole spine and Doc will treat specific disc, when I am unable to visit the Chiro.

It does not cure the symptoms permanently,but for me the relief is that I do not need to always, keep taking AB,s when infections attack.
I was fortunate to get hold of spinal xrays to show Chiro and this helped him confirm his diagnosis and plan treatment.

Why don't you ring Karen on NURSE ADVICE LINE today , and have a chat.

Do keep posting, you know we are always here to listen.

Kind regards
Kate


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totpotpink

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Posts: 36
Reply with quote  #3 
Hi Molly

Sorry to read of your pain.  I too (but for different reasons) associate chronic back pain with IC-until I developed IC four years ago, I have never experienced back pain and now, it's the worst symptom almost of this condtion and like you, it's the nerves in the back that have gone haywire - I have had steroid injections, denervation etc but nothing really truly works - I do know that when I have the 'burning' back pain, the IC side of things are also worse.  I don't know if the same nerves that are in the bladder also travel to the lower back as like you, my urologist dismisses back pain as something totally unrelated.  I now understand why back pain is the number one cause for days off work - I had never appreciated the severity of it before now or what impact it has on one's daily life.

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Hello, my name is Angela, I am 52 years old and have suffered with IC, stress and urge incontinence for 6 years. I have had to give up work and despite numerous and varied treatments, my symptoms and the horrendous pain and bladder irritation continue. COB is a lifeline and I have met some lovely friends through membership. Thanks for reading my profile x
Mother_of_3

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Posts: 6
Reply with quote  #4 
Hi Molly, Yes, I too think IC is connected to back problems.  I've seen an osteopath for 20 years for the back (I know I have to keep going on-and-off but I've had 3 pregnancies + car accident in that time and I have avoided the slipped disc ops etc) and now for IC. 
She REALLY helped the bladder "urge/pain" to go all the time with a specific treatment to the bladder muscle area - about 3 treatments really helped. 
Also, she does a kind of "feedback" with me - tells me to relax a muscle, eg right buttock, and then lets me know if I've done so, so I am learning to relax all the abdo muscles before I try and sleep.  So I recommend an osteopath!

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Cathie Wilson
julieshrive

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Posts: 5
Reply with quote  #5 
I no longer have the pain [ was going mad resolving  at walk in clinic 3 weekly  for urgent treatment in late 1960s ].As they tested it was usually urine infections interspersed with BV that seemed to be causing a problem with relationships.I had always had stress incontinence & urgency at times.I asked for Research in 1968  & got it from kidney & urology Profs at Royal Free Hospital  London .Amongst a fatty liver, scarred kidneys was found  spina bifida [ occulta?] and abnormal EEG  .Further research found neurogenic bladder & double ureters when should be one .I later had a keyhole urethrotomy  & pads  & for next 30 years on more than off[  due to Governmental Policy & Cuts  ]saw a Prof who had the strongest microscope in the country who would rotate the antibiotics keeping kidneys clear .
This was fine till started having spinal spasicity & excrutiating pain spasms that could be relieved swiftly [ miraculously ] with uti medication but was taking longer and longer .Acupuncture cupping for severe back pain revealed a bruise in sacral area where spina bifida is .
As I had already had a cardiac arrest was anxious that with my  breathing  that was effecting mobility  the situation was not going to become severely limiting as it had been with  Mother with extremely severe multi infart dementia .It  had also effected her mobilty [ hoisted everywhere] every action impaired  also continence to the point of speaking, perceiving  & swallowing.She too had had the spasicity spasms [ relieved with TENS ] & utis dying of one aged 90 +.
Have now found the Government yet again are ignoring disability considering the spina bifida to be  Low Priority Policy in how effects whole body[ early cardiac] .
The Expert surgeons & specialists  seen privately have requested NHS referral denied by Prof of Urodynamics  in London who said backs are not his remit .So moved here in Gloucestershire to find hospital appts not transferred & the only research can get is to be treated yet again  as guinea pig.Do nothing see what happens ?! 
This  causes great distress as I know at its worst the pyuria count was 80 and this can cause sepsis which can be fatal .A& E depts have said the tose who say not their remit will sort it out .They refuse to test saying " Their hands are tied" This is not acceptable.
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