help and advice with pain needed.... docs suck so far

hi folks. this post is going to be a bit of a long one so i apologise so far in advance.

also im new to this so again apologies.

for the past few months ive had stomach issues and was diagnosed with ibs or billiary colic disease. wasnt told much except take these pills and that was it. for the past 5 weeks ive had extreme pain in my left side leg bottom of back and all the way down my leg. was told it was sciatica and that it would go away, take the pain killers and do the physio i was given and it be fine. just this week ive noticed that im having incontinence issues such as no indication of needing the toilet, being slightly wet when i get to the toilet or marks etc. so as i was told to see gp i did on tuesday after being wet and sent home from work sick. my gp was nice. she examined me and being in constant pain with my back she was concerned i had no sensation around the back passage (test done needle pricks and finger massage didnt feel a thing) she sent me to a and e. i was sent to another hospital that dealt with neurology and a mri was ordered. they also did the back passage tests and saw i had no reaction. the mri showed nothing wrong. and now im home with even more pain killers (tramadol and dihydrocodine) and told to see gp. im frustrated as i feel im going round in circles. surely they should of done more tests for the back pain and the leg pain and pins and needles. if the mri didnt show anything could they not of given me any more tests, i feel now even more that they thin im making it up and its really frustrating me. im back to the beginning. its been suggested i see urology but i dont want to wait ages especially with the pain im in and i dont want to take more time off work.

currently now i have no sensation still in back passage pins and needles in my leg and back ache like you wouldnt believe. i still dont know if i need the toilet i havnt been in 4 hours

has anyone been in the same situation? can anyone advise what to do?

please im so desperate now....

18 Replies

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  • Hi, sorry to hear of your current problems, yes I'm currently having treatment for my bladder. Following surgery on my bladder I now have problems with my bowel" Yes it would be a good idea to see someone from the Urology Svs at your local hospital.

    Can you see your GP so that they can help with this ???

    I had mayor stomarch problems during the week so I ended up in A&E for my sins.

    They got me onto the Urology Ward & I was seen by a Urology Consultant the following day.

    I have now been discharged awaiting an appointment in Sep.

    Please let me know if I can be off help ???

    Steve.

  • thanks steve, I will do. the nurse who discharged me from the hospital said I wasn't to worry it simply meant that no surgery was required but I'm just confused as what it could be. I guess it wouldn't hurt to try a urologist but I fear the same will happen. as with all tests I have I have the symptoms and pains etc but nothing ever shows up in tests and its just so frustrating to hear the same words everytime.

    but again thank you for your reply :)

  • Hi. No probs, that will be a good idea as the nurse said not to worry.

    Yes seeing a Urologist will be a very good idea belive me.

    Don't worry about the tests that's what they are there for.

    Don't get frustrated you will get there in the end believe me.

    Don't worry that's what I'm here for.

    Steve.

  • definitely go back to the GP and ask what happens next. Were you actually seen by a neurosurgeon? If not, then maybe ask about a referral to one, or to a spinal injury specialist. You do also need to see someone about the bladder stuff - keep that referral to the urologist, but in the meantime maybe you might get a quicker appointment with a continence nurse (often you can self refer to the continence advisors). They can do some preliminary tests and maybe then fast track you to urology, or give you some assistance and advice on how to deal with it in the meantime.

    I would think if your GP was concerned originally, then they will still be concerned that nothing has been done except pain killers, so definitely go back and talk to them.

  • I don't get your treatment at all. I've always been told that what you are experiencing is a medical emergency and is caused by problems within your lumbar spine. Look up Cauda Equina go to your doctors or A&E and ask for more investigation and say you are not happy with diagnosis and numbness which you still have maybe a CT scan would tell them more.

    I understand how you feel.

    Jen

  • The way the system works is that gp makes referral, you go and take tests/treatment they give treatment if required within their brief, after which a letter is sent to your doctor with results. Consultants on!y do what they are asked to do and then give results/recommendations to doctor....who then decides to make referral to someone else based on the results of the last consultation. You are in the hands of your doctor, If you go into hospital via a+e or as inpatient then you are in the hands of the hospital who can follow through with in house tests and treatment, until you are released back to the care of your doctor. Its long winded and each referral takes ages for an appointment, and you are stuck in nomansland with no specific care or treatment. Its wrong but its unfortunately the way the NHS works. I'm sorry for the distress you are experiencing but am sure a right diagnosis and treatment will come as soon as possible. If you have a good doctor who is doing the best for you then please try and stick with the lengthy time factor...it must be frustrating for the doctor too.....if you do not have a good doctor then perhaps you could change to one who knows more about your condition. Good luck

  • thank you all. i guess im just frustrated with the pain etc. its also just as frustrating to be told everytime that when i have the symptoms for something eg gallstones and my thyroid stuff they did the tests and found nothing yet today i continue to have symptoms. iguess i expected the treatment since they did the tests and was conclusive but as soon as they said they saw nothing i was angry as im in so much pain. i guess ill need to go back to the gp and see what shes going to do next.

  • Hi loustew2012

    Sorry to hear you are having problems.

    I was just going to reiterate what Jen said, I've had lots of spine issues over the last year or two and have been in the care of a (very good) spine surgeon. He has always maintained that if I get any numbness in the 'saddle' area or any issues with going to the toilet that it is a massive red flag and that I should go directly to A&E.

    As you have already done that, I would agree that you must go back to your GP and ask for a referral to a spine specialist / neurologist.

    I know you've had an MRI, but they can (and do) miss things, and even a different person might see something in an MRI that another has missed. Also they may have done the wrong type of scan or scanned the wrong area.

    You definitely need to push for more investigation and don't let them off with we can't find anything.

    My surgeon was furious that a GP had let me out of their surgery with a referral (as I couldn't walk at the time) instead of putting me in an ambulance and sending me to the closest hospital.

    Good luck.

    Ade

  • Hi lou

    Reading through your post, I'm really worried for you about the "no sensation around your back passage and incontinence. Caudia equina comes to mind. Please read up about it and if you think that it's you, get to A & E straight away and don't leave until you are satisfied with the outcome. If the 2 hospitals that you have been to were unsympathetic then try a third. Hope this helps.

    Sarah xx

  • thanks sarah. as the hospital said they could not see anything on the mri they took so they referred me back to my gp who i saw today. he said id still need to wait for my referral and that would take 4-6 weeks although they did the sensation test yet again but still didnt seem concerned he just wanted to know what pills i wanted. i have a 2 week sick line and well im be back for another as theres no way im going back to work if i cant tell when i need to go to the toilet.

    over the years ive been fighting for my health and im now tired as ive gotten nowhere, i feel like they think im making it up but trust me if i dont feel right then i want it fixed.

  • Hi lou,

    Thanks for replying. Everyone here knows what it's like about fighting for our health. Half the world doesn't even come close to understanding what pain we suffer. Most of the time it's the not knowing that we can't get our heads around. If only we knew, we'd go out there and heal ourselves. I'm still really worried about your symptoms. If the gp's and hospitals won't take you seriously then all I can say is please look after yourself and hopefully take some time off work. As much time as possible. I know money is what feeds us but sometimes your health is more important. ESA from the Job centre is a meezly amount of money but if you need time off, then it's there to help. I really hope you get some answers soon. Please take "extra" care of yourself.

    Sarah xx

  • thank you sarah, i will do. hubby is on hand for emotional support which is great as the rest of the family arent exactly concerned. ive a sick line for 2 weeks which is also good i can try help myself without worrying about work. if it gets worse i will of course head to a and e and camp if i have to to get help. but thank you so nice that a stranger can say kind words. xxx

  • Hi lou,

    I'm so glad you have a hubby for support.

    There are no strangers on here.We're all a big family trying to help each other xx

  • In reply to some of you with bladder issues, you may want to look up IC and speak to your dr's about that.

  • whats ic? x

  • Oh my goodness you are getting treated as I am! I'm of work & hate it also pain escalating surgeons pa thinks I'm a tad crazy as I cried on the phone begging to get earlier visit with surgeon, as surgeon seems to think I cannot be in pain! Let me tell you this is me, I gave birth to 3 babies no pain relief at all! & this is worse! No sleep constant pain struggling every hour, even morphine patch don't seem to work on top of the painkillers! I'm also going round in circles & yet up to now only had mrI scan

    I'm at a loss with what to do, so swop tips & finding friends to chat with who understand is a relief

  • yes you are right having someone else to talk to having same issues are you is fantastic, you dont get judged.

    im lying awake just now cos i cant get comfortable. my shoulders are killing me and if i try to lift my arms they are heavy and i just wanna put them down. this isnt funny anymore. looks like im just going to take more pills.

    i went to my sisters tonight the first time out since trying to get to work getting a sick line in. i thought i was doing well till i got home and lay down. pfft

  • Aww bless you, I've been up hours, but my phone was upstairs as I just Potter around slowly, it's like sleep walking lol

    I have however spoken to my lovely neighbour at 5am & she has loaned me her husbands tens machine to try, OMG!! it's working for me it took 30 minutes as my majer pain is deep but it's working it's eased my pain so much, it's only on 1st level but working, so I'm resting on sofa with the dog by me for first time in a while I can get a comfy position

    It's been months since I slept propely & I'm hoping to get some sleep later

    So I've been Internet shopping & ordered a boots back belt one of eBay as it's half shop price! I was sceptical as I've purchased all sorts & don't do much or nothing,

    I think if people cannot see a disability then some think ( wuss ) my daughter in law even said, I get back ache but I just get on with it ggrrrhhhh anyway being me I shrugged it of, even crossing busy roads opening doors ect is a challenge when I do get out of the house

    I've worked since being 16 & now had to call in sick, I've been of 6 weeks as it's to much to sit in office all day & my employer has been so supportive to buying me adaptions for desk a break every 20 minutes to have little walk, but the pain wasn't managed at all so still crippling me

    This tens machine stays on for 15 minutes a time, once it's stopped, my pain stays lower for a little bit so I switch it back on

    The one I've ordered has a stay on option I think ? Reading it, so I wondered if that may help you ?

    I'm due pain relief now & this is helping me go longer, so let's hope it carry on x

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