I am 21 years old and have had this spine pain and leg sensations since I was 17 and contracted some sort of unknown virus.
The symptoms I have with my spine is pain in my lower lumbar with tingling/hot/cold/water/numbness sensations down both legs that comes and goes. All of these symptoms are so uch more severe when I'm on my period or just before it starts.
All of this started after I contracted some sort of virus which is unknown due to GP refusing to come out to me. I have never been the same since.
I have had MRIs and a CT Scan of my spine. The MRIs of my brain showed no evidence of MS according to some spine surgeon whom I've never met as they have dropped me off their list without even bothering to meet me to discuss the results so I don't know the results for the head, neck and upper back (thoracic) truly. The lower lumbar which I had in May 2008 before the bladder problem started showed grade 3 disc degeneration with a schmorls node. Apparently there was no evidence of nerve impingement. The CT Scan I had last year showed a possible pars defect/fracture that may have healed according to the report from the radiologist.
Since the end of August 2008 I have had a bladder problem consisting of severe frequency, urge feeling, passing only small amounts and abdominal discomfort.
I have not had any recent up-to-date MRIs of my lumbar or pelvis since my bladder problem.
What I do find strange is that this bladder problem started 24-48 hours after an intense bout of physiotherapy for my spine and lower abdominals to try and help strengthen it even though they are not sure what I have got wrong with it and said the grade 3 degeneration and schmorls node is 'normal' which I don't believe.
Is it possible I may have been injured from the physiotherapy or trapped my nerve and now it is effecting my bladder? It seems mighty strange and a coincidence that it started straight after this one physiotherapy session?
I have since refused physiotherapy sessions as I am not happy doing it as it also makes my spine and leg pain much worse anyway, defeating the object. I feel it's just not worth the pain and disablement it causes to me afterwards.
I had urodynamics on my bladder which showed I do not empty completely (urinary retention) and also had follow-up post void residuel checks with an ultrasound scanner probe. Theu urodynamics tests showed that I had 140 mls left in my bladder after going to the toilet. The ultrasound that I had recently on 14 April this year showed I now have 300mls left after going to the toilet.
I cannot cope with this bladder problem as I am having to get up 3-6 times a night just to go to the toilet as it seems to get full so quickly as I feel like I am so full I am about to burst. This sensation is slightly relieved after I've gone to the toilet but it soon comes back again after I've been asleep for a while as it fills up so quickly due to being at least half full already as it leaves urine in still even after going. It is like this in the daytime too.
This retention has resulted in me getting bladder infections.
The thing that confuses me is that when I mentioned this bladder problem to all the spine surgeons I have seen at the one hospital, they did not seem to take any notice and just deafed it out, going onto the next thing. This certainly frustrated me as it could be to do with my spine and I do know that it is a 'red flag' emergency and has to be dealt with fast or it could be permanent which, if it is true, will be by now as I have had it for over six months.
One of my urogynaecologist's registrars saw me for the results of the tests, as the urogynaecologist I was under went by the time I had gotten round to actually being seen. I nearly did not get seen that day! Luckily I spoke out and asked when I was going to be seen as I had been waiting for a while to be seen.
The registrar recommended I self catheterise and after three weeks sent me to a continence nurse who didn't show me how to do it. She just toold me to go and try it. I ended up going to my practice nurse who tried to help show my mom how to do it as she said I should not have to do all this on my own and I do agree with her. But my mom was too scared to help me as she apparently was worried about causing more damage so I never did the self catheterising after all. I tried it but it was just too painful as it hurts my urethra and it is way too frequent. It would have been better to just leave one in.
Now I see the actual urogynaecologist and he now says that he will do a urethral dilatation to make my urethra wider as he thinks it has narrowed and said he cannot guarantee that it will work but hopes it will. He said if it doesn't work then he will treat this retention with drugs.
There was no mention of this sacral nerve stimulator that the registrar told me about if self catheterisation didn't work. This urogynaecologist only mentioned drugs so far which I am skeptical about as I took one called Vesicare which made me unable to go to the toilet and made the urge feeling much worse. I'm scared drugs are not the right way and will make it worse. I'd rather have a catheter than that.
I'd certainly be willing to try the sacral nerve stimulation as I have heard and read that it is quite effective for both incontinence and retention.
I haven't heard of anyone being treated with only drugs for retention? Is this the most effective way? I'm just not keen on the side effects of drugs as I've had bad experiences with oral drugs before and now my stomache is still recovering and I'm having to take probiotic yoghurts as I was prescribed so many oral antibiotics I cannot count and my stomache has never been the same since that now. It's given me another problem where I have frequent loose stools.
Is there another way apart from orally that I can take these bladder meds if they make me take them? I don't want to upset my stomache anymore than it already is. Has anyone been treated with only drug therapy for chronic urinary retention?
The urogynaecologist refused to offer me a suprapubic catheter and wants me to take drugs instead by the looks of it from his conversation with me.
I'm just so fatigued because of severely disturbed sleep and he didn't seem to realise just how bad lack of sleep is and just said "that is what health problems do. It effects everybody but in different ways." Don't really know why he said that as it didn't answer or sympathise with my question of having something done to let me get a good night's sleep. I was very depressed after he said that as I don't know if he knows just how bad this is for me.
He also told me that there may be nothing they can do or that I'll never get a true answer to what is causing it but he does have suspicions on it being due to my spine and the nerves not working very well. He said it may be possible I'm stuck with it for the rest of my life and that also was not something I was hoping to hear. My heart just sank real bad when he said that. How am I going to cope? What are the most effective treatments? All this is just getting to me and I don't know where to turn as I feel I've come to the end of the road in life before it's even begun. I just feel like nobody in real life seems to understand just how bad my life is right now. I don't even know what my future holds with this horrible unkown problem.
I have gone from being a fit young student to a young lady with quite a few undiagnosed and untreated health problems, rendering me disabled.
Sorry for the long post and all the questions. I just had to get it all out as I know most on here are pretty good at lending a listening ear and supporting each other as they've been in similar situations. I feel like this is the only place I can turn right now.
Has anyone evaluated you for Cauda Equina Syndrome? What you are describing are the classic signs and symptoms of CES, which was probably brought on by that intense physical therapy workout.
You really need to see a new surgeon who can evaluate you for CES and a new MRI and CT scan that can show the compression. The bladder issues are classic for CES. I know, because I also suffer from it.
If it is CES, then they can do a surgery to relieve the pressure , which in turn may allow the nerves to your bladder to start functioning better than they are now and help to resolve or at least improve the bladder problems.
Self cathing is not fun, but it can be done, and it should only be done between 4 and 6 times a day if you are doing it properly. It can be uncomfortable though, I won't lie to you about it. If you can get through doing it the first few times, it does get physically easier. I also had no luck, whatsoever using medications , in fact, I saw no improvement and in fact, wound up having more difficulties.
I wish you much luck , and really insist on being evaluated for CES. If it is, then surgery must be done to relieve the compression on those nerves, and the sooner , the better.
No. No one has evaluated me for Cauda Equina Syndrome. The spine surgeons I saw just discharged me back to my GP, saying there was nothing they could do and that it was just a bit of degeneration and that it was 'normal' even though the radiologist who read my images said that it was unusual for a person of my young age.
I am angry at the fact they made me do physiotherapy without a proper diagnosis or carrying out more accurate tests. The physiotherapist also did not bother doing any tests. She just did physiotherapy and that's it. She also said that there was nothing seriously wrong and started me on intense physiotherapy to try and strengthen my spine but I felt no improvement and it made it much worse anyway. I have to say that I didn't really believe any of the spine surgeons or the physiotherapist as I told them before I had my bladder problem that I started having numbness and strange sensations down where my pubic bone is but they ignored it when I mentioned this which I did find strange as I do know it is a sign of Cauda Equina Syndrome.
I am considering seeing another spine surgeon at a totally different hospital but don't feel I could trust any of them now as last time they just basically brushed my symptoms and what I was saying off. I feel like every doctor I see will be exactly the same. I've always had bad experiences with doctors and I don't know why.
I feel like the spine surgeons do not take my symptoms seriously as I can still walk and they think that because I can walk my spine condition is not serious or warrants medical attention. This is the impression I keep getting, even from my own GP who even said that it was all in my head! I know it isn't in my head. It never was. I also had one GP say my bladder problem was in my head as she could not give me an answer as to what it was as this was before I had tests on my bladder which showed retention. Basically they all made me feel like I was going mental, which I think is just awful as I left these appointments in tears as I felt so bad and upset afterwards I just couldn't wait to get out of there! I felt like they insulted me and discriminated against me just because they didn't know the answer or have something good to say to me. They didn't even know how to sypathise with a patient, let alone reassure one!
Is it possible that after over six months that if I had an operation to get my nerve untrapped it would recover or at least partially recover?
I hate self cathing to be honest and would like an alternative as I find it very painful and inconvenient for me. So far the only alternatives I have been given is meds/drug therapy which I have heard is not very effective and have unpleasant side effects as it looks like you have experienced and also the sacral neuromodulation which I have heard is quite effective for urinary retention that isn't obstructive. I'm having to carry out my self cathing once a day at night before bed as this is mainly when it is troublesome as it interferes with my sleeping pattern.
I'm wondering if I should just call a district nurse and ask them to insert a proper catheter for now so that I can at least get some sleep as it's making me feel really ill and I've started getting rashes all over my body since December 2008. The only problem with this is that I have to get a GP to action it as my urogynaecologist wouldn't do it or arrange it for me. I'm worried though that my GP will not do it because I'm under a consultant.
Do you have chronic retention like me too?
When you mention winding up into more difficulties with the medication, what sort of difficulties do you mean? Do you mean being nearly completely unable to empty your bladder like I experienced when I took Vesicare? I got to a point where I knew I really needed to go to the toilet but when I went I couldn't let it out and came off the Vesicare and it sort of recovered. I certainly noticed the difference after I stopped taking them. I could at least go and do one again.
What sort of medications were they? Were they anticholinergics? What were they called?
I know there are some that are actually anti depressents that also enlarge the capacity of the bladder but I am not keen on these due to reading about their side effects on the brain. I don't want to wind up getting something else more serious wrong with me. It mentions such side effects as psychosis, etc.
My urogynaecologist wants me to try them but I'm not keen and he said he does not know how effective they would be for me and cannot guarantee they will work when I asked him so really I feel they are not really a risk worth taking.
I am going to see if I can find a renowned spine surgeon who also deals with neurogenic bladders.
I will mention Cauda Equina Sydrome when I see him/her and also to my urogynaecologist when I next see him.
Sorry for all my questions.
Many thanks for your excellent, helpful and informative post. It's much appreciated.
Since 2002 I have had MRI's of my lower back from sever pain when sitting. After a night of sitting on a hard bench watching my daughter perform I lost all feeling in my feet and had sever burning in my legs and pain under my butt. I lost my bowel functions for several days until I rested and got off my feet. I have spent over 7 years now in severe pain and a lot of injections, chiropractors, PT, massage therapists, etc, all because the MRI only shows two bulging discs at two levels. Three weeks ago a Dr. refered me to do a procedure called a discogram. My problem seems to be a compression issue. The Dr's looked at me for years as if I were crazy. The discogram wasn't so painful since I've had a lot of injections. Only when they hit the disc that is "torn" did it hurt. Now the torn disc area has to be fused. I get back to the surgeon and he trys to put off the surgery another 4 months and total of 6 months from testing to surgery date. Not to mention if they would have done this is 2002. The more I sit the more I get bowel incontinence. I was extremely mad when the Dr put it off as I have been put off for a long long time. The discogram sure saved my health and my peace of mind. I would recommend that anyone please question your Dr and if that's not acceptable to you, learn of the procedures and insist on them. A little, and some:times a lot of pain in the procedures is worth the diagnosis in the end. Laying down for me removed the pressure from the disc area and could not be seen in the diagnostic images.
Your symptoms sound similar to mine. I noticed that before this bladder problem occurred, I had a sore tailbone, particularly when sitting and when I tried to learn to drive my one effected foot that the sciatica was in went completely numb and I had to stop learning to drive.
I also had numbness on my pubic bone area too.
I've only had physiotherapy as a treatment and it was certainly not for me. It was very painful and made my pain worse after so I gave it up. I wasn't even offered anything else. I was just discharged back to my GP!
In my opinion they rely way too much on all these imaging which, from what I've read, do not show everything and are not 100% accurate either.I read that someone had back pain undiagnosed for years and thought not to be serious from her scans but in actual fact when they did operate eventually after years of suffering it was much worse than they expected and wasn't shown on the MRI. Though this could be because of the time she was left without treatment.
I've never even had a discogram procedure offered to me, let alone mentioned! I've only had imaging - plain x-rays, plain ct scan and plain MRIs with no dye. And these were supposed to be actual spine surgeons! Makes me wonder....
Yeah, I know how it feels when Doctors look at you as if you are crazy when in actual fact you know you're not. It's no wonder people with spine and other health problems get depressed!
I would have thought with your symptoms that the Doctor would have done the surgery right away as again it is a 'red flag' to have bowel issues like you are having. In fact you could go to the emergency room as I have thought about doing this myself on many occasions.
I am certainly questioning my Doctor but am kind of glad I am not seeing him again as they are not very good anyway from my point of view and am now looking into seeing a totally different one at a totally different hospital too so that I can start affresh without any old notes so that they cannot be allowed to be biased and protect the other Doctors as I know that's what they'd do in the first instance.
I know quite a bit more than my GP or the spine surgeon I saw seemed to about spines from the internet and the range of available tests and treatments available, though I certainly take the brunt of their anger if I try to insist on certain tests or treatments as they get angry and don't hesitate to show it or just deaf me out and are onto the next patient. I've had this so many times now. They always seem to think that the patient knows nothing and is there to be lectured or to accept what is happening and to live with their condition.
I totally agree - pain in the procedures is worth it in the end as, at least, I'd know what it could be or rule it out, etc, resulting in some sort of answer.
I have heard and also read about other patients who have had an MRI or other form of imaging lying down, rather than standing up, and they too found it removed the nerve pressure and resulted in a false diagnosis of no compressed nerve. This is actually what I am suspicious about on my images as all of mine were done lying down. I would have thought they would have done them standing up as well as lying down and also sitting ones too, as this would be so much more thorough than just one position which risks missing a lot of important information out that could save so many people from ending up how we are - with bowel and bladder problems from misdiagnosis and delayed treatment. I would certainly be interested in actually doing a study on this as it would help so many people in the short term and also the long term.
Don't be surprised if another doctor says the same thing. I've been to 5 different surgeons over the years. As long as you are not severely compromised and the MRI is not showing they don't seem to listen anymore. Or, it may have something to do with the money made off of backs and there problems. I've invested over $10,000 out of pocket on gagets, braces, procedures, medicines, vitamins, exercise equipment, etc. I've gone back to my business (which I owned) and sat down crying before my employees. I stated "these doctors just think I was a basket case". Do these Dr's realize that sitting is a very big issue when you have to work? You have to use it everywhere and take it with you everywhere. But sitting doesn't seem to be the issue they look at as much as other tests on walking, toe raises, heel walking. Although I had a limp as the numbness and burning throughout the day weakened my left leg, that wasn't an issue. I tried for years to tell Dr's that my pain management Dr wanted me to have a standing MRI done. That just didn't exist in Florida they said and it would show on the MRI or the CT scan if I had a problem.
I'm seeing another surgeon tomorrow for my lower back surgery.
I'll let you know when the surgery is scheduled and how that comes out. I really don't look forward to being made to look stupid with the little tests they do. I haven't had a Dr touch me yet. Only Physical Therapists touch you any more.
Pleased to hear that at least you now managed to actually get a spine surgeon to believe just how bad it is as it sounds like they are trying to help treat your spine condition by spine surgery. I've never in my life since I had this spine problem been offered any form of treatment except physiotherapy which is limited in uses and pain control and is not that effective in my opinion and I believe just accellerates the degenerative process which is what I believe has happened to me and has resulted in now a fresh problem (my bladder) and I certainly thought it was pointless as my physical strength has nothing to do with my spine degeneration which is what they said, as they said I had a weak back! No the degeneration is not caused directly by weak muscles, it's caused by actual degeneration and breakdown of the spinal canal and bones. This may actually be attributed by vitamin deficiency, such as B12, etc, from what I've researched and heard from other people with exactly the same symptoms as us and doctors don't even know about this being one of the possible causes for degeneration but it certainly makes sense as the human body needs these vitamins to enable it to function anatomically correctly. Vitamin B12 is what also helps the body's nervous system to function correctly and low levels of this may represent symptoms of sciatica and other nervous symptoms. Weak muscles can indirectly make the pain worse as they in effect do not hold up the spine as well but this will not fix the problem.
The only way they'd ever know is by actually doing the right investigations and not leaving it until it's too late.
They only did imaging of my spine and then sent me to physio and then decided I had only mild degeneration (not accroding to the radiologist's report - they reported grade 3!) and discharged me back to my GP!
I'm certainly expecting a lot of surgeons to completely dismiss my symptoms like they usually do as, like you said, it certainly could be to do with the money side of things which wouldn't surprise me.
They also are probably not too bothered due to the fact they don't know just how awful it is to have to cope with a chronic health problem for the rest of your life if they have been fortunate enough to not have had to ever deal with such a life changing thing as this themselves. That's my opinion from the way they've treated me (or should I say not treated me!).
I get the feeling that because back pain is an invisible health problem doctors just don't get how seriously it can effect people's self esteem and ruin their lives. This too is a lot of the problem. If I'd have broken my leg and had of gone in then they would have done something about it but it's not the same for back pain and even other kinds of health problems or pain. They just always seem to think we're mental which seriously is such a stupid excuse on their part to be honest. We know we're not. They're the ones in the wrong, not us. We're just left to suffer in silence as usual. We're the victims of pain and suffering because of lack of recognition of what we are actually having to go through due to doctors' misdiagnosis of 'it's not serious, just go home and it'll get better over time', etc.
I too broke down in tears many a time and my father and mother try to reassure me but I know different as I know there is not much hope for me on this now. It's too late. My nerve, if it was trapped, is dead. Permanently.
I too noticed that sitting was not taken into consideration in their physical examinations. Only the aspects of standing, bending, walking, etc. I have to say that they seem to think we can still work even if we have problems sitting!
I've actually never heard of a standing MRI and am not sure if they exist but it would be a great invention to make!
I too have been told that anything will show up on the MRIs and other imaging even though they are lying down.
I totally agree, seems more physical therapists seem to be the ones eager to touch people anymore. I've had surgeons touch me but only briefly! They jusy did this 'can you feel this?' thing where they touch your legs and feet to see if you can feel them and test for any nerve changes in the legs.
I hope your surgery goes well and good luck with the recovery process. Though, surgery is a last resort, sometimes it's the only thing they can do that may help the pain once all other conservative treatments have failed.
Wishing you a speedy recovery and relief of pain.
I seriously don't know my outcome at the moment...probably be stuck like this for the rest of my life from what I can feel. I'm certainly not impressed by the spine surgeon's approach to me. They only seem to treat back pain if it's made people completely paralised! Terrible way to approach it in my opinion. Better be safe than sorry, or so I once thought...
Sorry, I've had a rough few days, so I didn't get back here to see your reply.
Yes, it is possible that even after 6 months or more that the nerve could heal some or maybe even completely, but it depends on what nerve it is, and where it is located.
The nerves in the lumbar spine go to the lower half of our bodies. It may take awhile but it can heal, if it is not too severely damaged.
As far as the bladder meds go, yes they were anticholergenics, vesicare, and a few others caused me not to be able to empty my bladder at all, even though I can't empty much on my own as it is.
I know that self cathing is unpleasant, but a supra pubic cath is no picnic either and neither is a regular cath, which can cause more urinary tract infections. The problem with the pain may very well be caused or exacerbated by you waiting until bedtime to empty your bladder. I realise that carrying around catheters is no fun, but you can buy the short 6 inch ones which you can hide in your purse or bag. I carry mine in my purse and no one knows they are there.
You need to seek out the opinion of at least one other surgeon and emphasize your bladder and bowel issues, as well as the pattern of the numbness. If you have to , print off the symptoms of Cauda Equina Syndrome, and bring it with you.
I know that too many doctors rely solely on reports and the MRI films, but a good surgeon should evaluate you and make his determination on your symptoms, not on a bunch of pictures that show a moment in time, rather than what you are dealing with constantly.
If I can be of any help, PM me or post again and I will try to get back a bit faster.
Thanks for your reply. Hope you are feeling a bit better now.
So there is maybe a little hope if any doctors can actually start to evaluate me soon. I'm not sure which nerve it is but it creates pain and other sensations in my buttocks, down both my legs and into my feet too.
Anticholinergics are known to sometimes cause difficulty emptying your bladder due to their action on the bladder muscles. I've read that it says people who cannot empty their bladder fully or at all should not be given them as it can cause it not to empty at all (acute retention). They basically do the opposite for us, whereas they would help someone with urge incontinence, they make us worse as we have the opposite problem. I immediately came off mine when I couldn't go as I was scared I'd end up in hospital. My doctors gave me them before they'd even carried any tests out or knew what it could be that was causing my symptoms - basically they tend to guess and then prescribe something instead of actually trying to find out promptly what is causing it. Now the urogynaecologist is trying to make me take more different drugs that he cannot and does not know if they will be effective or not and I'm not really going to go for that as it may well cause something worse! Drugs, unless used for the right condition which is accurately diagnosed, can cause worse things sometimes than what the original health condition is prior to taking them.
I have not really heard of chronic urinary retention being treated by drugs anyway. It seems to be that it's treated by catheterisation, sacral neurostimulator or even surgery.
I have no idea why my urogynaecologist is trying to force me to take drugs when I am not happy about taking them. Should I just accept the fact he is trying to give me them? Is he doing the right thing by prescribing drugs for chronic retention? Seems a bit odd to me. He is trying to put me off getting a catheter and does not seem to know about the sacral neurostimulator as he never mentioned it as an alternative. He just went on to say that if I won't take the drugs then there's no point in him trying to help me! He seems a little negative towards patients when they are not keen on certain things, rather than talking to them about the alternatives. I have a feeling it's drugs or nothing with this urogynaecologist! I think I perhaps should see another urogynaecologist or perhaps a urologist who actually specialises in the bladder. He even said to me that there's many things that carries risks, which is right, but it still did not reassure me about my question to him on the drugs! I refuse to take them without proper evidence that they will be guaranteed to work. I know a catheter will work as that is what they are designed to do but drugs I'm not so sure about, even he won't say, and that's saying something...
The thing I have to say I hate with self cathing is the fact I have to keep taking it in and out all the time and it's making my urethra sore and is such an unpleasant procedure that I cannot really say I would carry on doing it if there were alternatives to it that were less hassle in the fact of having to get up in the night to do it, etc. The worst thing about it is having to insert it as it is such a horrible sensation and it puts me off doing it. Once it's in that's fine but putting it in and taking it out is horrible. I have tried it in the day too and sometimes twice a day in the morning and before bed but it still hurts to insert it. I don't know why my urethra is so delicate and painful to perform this. It was just the same when I had urodynamics. I could hardly walk after that! Mom had to try and hold me! I was told that cathing doesn't hurt only uncomfortable but I have never had that. It's always hurt me. It's strange because once the catheter is in, it's ok and doesn't hurt. It was not too bad when they did the urodynamics and it was in place. It seems to be when inserting it that's the problem.
I have got some of those little ones that I can take out with me but never really go out anymore as I'm just too fatigued and frazzled from disturbed sleep from this bladder frequency. I just can't cope anymore with it and don't know now what to do. I don't know whether to just go to A+E and see if they can do something.
I will find some information on Cauda Equina Syndrome and take it with me when I can get another referral to a different urologist/urogynaecologist and spine surgeon. Hopefully they will actually take my bladder problem into consideration along with my spine. Seems that these two things are linked as I never had any problems with my bladder before I had this spine problem.
Do you think it is a good idea that I go to A+E and get this bladder sorted as it's just seriously disturbing my sleep and I am coming now to the end of the road with it?
I have now arranged to have an indwelling catheter fitted by my practice nurse at my GP surgery as my mother also thinks it's a good idea as she can see I'm getting depressed and frustrated with this constant lack of sleep which is seriously disturbing my studies.
I hope you are going to get some great results. I had talked with my doctor about your situation and while waiting spoke with another patient who had different results for her situation. One thing I did notice is that the Doctors have to weigh more than just surgery for a patient. The one patient had other medical conditions that made her a higher risk for surgery than they like to consider for such a high risk surgery. For the one patient weight was a factor along with being a diabetic and other joint problems with her knees. They opted for a morphine pump for her. This was not even offered for me. I did talk with the Dr. and he confirmed this too. He said that it is something that a patient really needs to consider and when it gets to a stage that they are in a satisfactory health risk then surgery is offered as an option to consider. I have bowel and bladder issues but are not continuous and is something that is a compression issue and I can't sit still for the pain. I have two torn discs but only one is causing the pain, (go figure). Well, now I'm scared because now they have finally found the pain problem and I'm now scheduled for surgery on Tuesday. They showed me all this hardware to put in my back to stablize it. It's a 4 hour surgery with a 4-5 day stay in the hospital.
Niad, keep in touch and let me know how you come out with your procedures and your nurse. I'll be praying for you.
I've just had a letter come through the post today scheduling a date for my urethral dilatation and cystoscopy under general anaesthesia and cannot do the catheter now as the surgery is scheduled on 20 May which is not far off - one more week and a bit. My consultant wants to see if he can make my urethra wider so he won't want me to have a catheter in yet unless this procedure doesn't work.
I will go back and get one in if after it doesn't work.
Not sure how long it takes for the urethra to recover form this sort of op.
Did your consultant actually say any treatments for my particular condition?
I don't consider myself to be high risk for surgery.
I wish you good luck with your surgery and want to thank you for your continued support at this very difficult time.
I will let you know how the op goes. Hopefully it won't be too painful to wee out of after but I'm betting it will be.
I just finished this thread and can really relate to all that you are going through. I have similar spine issues as well as in the neck and other areas (osteoarthritis etc).
Just wanted to mention a couple of things. Niad, that procedure you are getting done can be different for everyone. I had it done when I was in my 20's for bladder and kidney infections and stones. They figured the wider opening would help the infections. It didn't but a person has to try, right? It could prove successful in your case. You can be thankful they are putting you under as it is somewhat painful. It heals sufficiently in a couple of days. I bled a little bit for the day and I would have appreciated some previous notice as I had to make it from the examining table to the dressing room with that. Clods. I had no 'equipment' with me so stuffed alot of tissues to hold til I got home. Sounds hygenic or what? Now, 30 years later, I buy those cranberry concentrate capsules and empty them into a bottle of water to keep the infections at bay. Makes the water a little lumpy but tasteless and economical compared to alternatives or antibiotics. You see now, things can get blamed on aging and menopause.
About the standing or sitting MRI. I asked the muscle and nerve specialist about this last week. He said you have to sit perfectly still for sit down, which I don't think any of us could do at this point with so much pain and discomfort with sitting. His opinion was that those MRI's just aren't as accurate. But he and I agreed that standard MRI's may not be showing the weight impact that needs to be seen on those nerves.
I am scheduled for MRI full spine next month and on a cancellation list. I am glad some here are willing to discuss Cauda Equina as it is one of 'those' subjects. Now that I see such a young person with similar problems to mine, I know it's not menopause. I am sorry that you have to endure this and so young; the loss of sleep alone is enough to drive you....I thought I was getting some obsessive compulsive peeing disorder 24/7 --(lol) or something until I sort of peed myself the other day (the day after the dr. appoint and after a workout). So apparently the MRI will show whether this is Cauda Equina or cervical spine issues or both. I am now trying to keep a peeing and bowel schedule--I usually can't tell if I have to go or not or it is not enough of a sensation many times. The pain in the tailbone, lumbar, pelvis etc. is intermittant but I think you mentioned this.
I hope your appointment goes well. I hope my post about the procedure doesn't upset you but you seem like you would like some upfront honesty, when you can get it.
Continue being persistant (not crazy, right?) as you are young and those dr's need to know there are some very real problems here.
Thank you all for your very helpful posts,
Last edited by trychocolate; 05-09-2009 at 02:56 PM.
Thanks for your reply and information on the procedure.
I am glad you told me about that as it sounds like a horrible procedure to have to endure, especially when awake. Do you mean it continues to bleed like when we get our periods or do you mean it only bleeds when we go for a wee? How long does it take before it stops bleeding? I've heard it can bleed when we go for a wee i.e. a bit of blood in the urine but not like when we get our periods. My consultant never mentioned this. He just said it will be very sore for 48 hours.
The only problem is is that I cannot take oral antibiotics due to a stomache problem that taking so many of them has caused because I had two urinary tract infections and they gave me so many different ones that apparently my stomache is going to take a while to get back to normal. Is there any other way to take antibiotics other than orally? I've heard that you can have injections but I'm not sure how that could be arranged. I have talked to my mother about it and she said that the hospital will have to arrange for a district nurse to come round and do it as I won't want to go out in a car after having this procedure as she said it'll be very tender down there.
My consultant is doing this procedure hoping it will widen my thought to be narrow urethra and treat the retention thus treating or preventing future infections. He did say he couldn't guarantee it would work but is doing it anyway to find out and try it.
How long will it be before I notice an improvement in my symptoms? Will I know pretty much straight away or will it take at least a week?
Your experience sounds awful and I didn't know it would bleed that bad.
The standing or sitting MRI I can understand what your consultant is saying. It does make sense. We would find it hard to sit or stand for that length of time. I found it hard lying for the long length of time it took and couldn't get up after and the MRI technicians didn't even bother to help me up. They just walked away and left me to my own. I struggled for a while and eventually got up. That is what got me mad as they knew I had a spine problem yet they couldn't even help me up and left me. I totally agree, the lying down MRIs would certainly not be showing any nerves compressed as people's pain who is intermittent may be becuase that nerve is not trapped all the time. This is what I've got a suspicion I've got.
I am very grateful the people on here are mentioning things, such as Cauda Equina, as my spine surgeons never even mentioned this or even suggested I got checked out for it, even though I have this bladder problem. It actually makes me wonder if surgeons know about these conditions, especially about bladder problems being related to spine problems. My spine surgeons certianly didn't seem to know that much if at all about it. They just ignored it and shrugged it off.
I can honestly say, I wouldn't have thought your symptoms were due to menopause, even though some bladder problems may be related, they are not always. It could be related to your spine, just like my urogynaecologist thinks mine is.
I can feel when I need to go for a wee, it's very painful and so uncomfortable all the time. I'd assume this is due to my retention as I had loads of cultures on my urine and they came back clear even though I still have the uncomfortableness so it must be the retention. 300mls of retention I would assume would feel very uncomfortable though. I'm hoping I don't get kidney failure as a result though as I've been left with retention and no treatment for 8 months now.
Yeah, my pain in my tailbone, pelvis and lumbar is intermittent but gets worse near and during the time of the month.
No, your post on the procedure didn't upset me as I was aiming for some upfront honesty and prefer to know what to expect rather than how you had where you were not told about certain aspects. It was the same here. My consultant didn't really say all that much about afterwards. He just said it would be very sore. That's the only thing he said. He never mentioned anything about any bleeding or anything like that.
By the way, did you have a catheter in after or did you have to wee out of the painful hole as I'd imagine it is extremely sore and stingy for a while if you had to do that? That's certainly the part I'm not looking forward to. Though I have chronic retention so I wouldn't have thought they would send me home without a catheter, not sure. I would have thought it would not heal without being rested by a catheter as hot wee going down it all the time (I have frequency so bad I have to get up 6 times a night at times) would halt or stunt progress.
Did you have both the cystoscopy and urethral dilatation at the same time or just one or the other of the procedures?
Is yours retention like mine? How did they treat it other than urethral dilatation?
I'll definitely continue to be persistent, though they tend to think that I'm being a hypochondriac when I keep coming back and asking for tests to rule out or find out what this could be, as last time they told me to go away and that there was nothing wrong with me from what they could see and that I didn't need any more tests as apparently according to them having more tests would not have made any difference. I totally disagreed with them and left very annoyed and unhappy. One consultant rheumatologist I saw, as I have this rash on my face near my nose and on my cheek area (looks like the Lupus butterfly rash to me) which is still here due to being undiagnosed and deafed out by every doctor and consultant I've seen, even had the rude arrogant nerve to say he wasn't going to give me any signed medical forms for disability benefits and to get on with my life and deal with it basically. He just came straight out with that nasty comment out of the blue. I just looked at him totally puzzled. I had no idea why he turned the conversation into about benefits and all that. I did not come to get benefits. I came to get a useful answer or at least some proper tests. All he did was a physical and no blood tests, nothing. He said 'nope there's nothing wrong with you' and quickly ushered me out of the door as fast as he could. I was in tears after that. I knew this cosultant was wrong and didn't know just how bad it feels to be shoved out the door when you are chronically ill with no answers. He was so fortunate not to have to have experienced it. I sure hope one day he will and he will certainly know what it's like as I don't know why they do healthcare if they are not in it to actually care as that's what it's all about. Least I thought it was...
I've had way too many bad experiences with doctors it's just unbelievable. I know they probably aren't all like it but I really don't know anymore...
Sorry for my long post and I'm pleased to be of help.
I hope you get the answers you are looking for and can get it sorted as I know how frustrating and tedious living with these sorts of illnesses and chronic conditions can be.
I know it's really difficult when you don't think dr's take you seriously or don't understand. Sometimes I think it's because we have so many symptoms that they get overwhelmed and maybe confused with all the information, plus we get emotional/too intense, and they can't handle that at all.
Catheter: I've never had one. And I don't think it is a standard practise here yet. So after the procedure, yeah it can be a bit painful but dr. knew I was so used to UTI, bladder infections etc. that he probably thought I was 'informed' about pain 'there'. It's like an infection, you don't want to go because it will sting a bit, but you know it will clear up probably next day. Drink lots of liquids and fight that urge not to go (as I am sure you are familiar with). If your situation is like mine was, you will simply need a pantyliner changed regularly for the rest of the day, that's all. You will feel more comfortable that way. Maybe you won't have that problem, but it's good to be informed, right? I gotta be honest with you, the thought of this whole catheter thing, well, I just can't imagine that. Maybe in the future though. No difference car travel, that area is well protected and not affected by sitting or travel, but not for long periods of time to give yourself a chance to rest up a bit. As to whether it works, time will tell and try not to be overly anxious about the outcome. It won't help.
Just a reminder, I don't tolerate antibiotics well either and I'm sure you know what cranberry is for as to bladder and UTI's: it provides an environment in those areas where bacteria cannot survive, hence, no infection, therefore, no pain. Don't know much about other forms of antibiotics other than pills and intravenous.
I have been trying natural immune system builders like oil of oregano and echanachia (in addition to cranberry), and it worked on the last UTI. I try raw garlic and other things I hear about. I keep thinking how young you are, but try what you hear about in your area that might help you fight infection.
I was up 4 times last night so the frustration is too much at times. I think because I have alot of other signs and symtpoms, I expect things to affect my sleep. I have to lay down during the day for a bit to focus on relaxing and even then, little time goes by and I need to go. Some days are worse than others. Has your dr. recommeded anything to help you relax at night so you can get a few hours anyway?
I, too, apologize for long posts. One post I read said to be careful not to express a self-diagnosis to your dr. Just give clear symptoms about one problem. Sounds like good advice and I have been trying this. It's less confusing for him. And I try to control my emotions. I'll try almost anything, despite there being alot to deal with.