Help needed desperately from professional

[backanddesperate]

Hi there, I've never used a forum but am desperate for advice after some years with extensive back pain that just isn't getting better I need some medical advice. I played a lot of football one summer in 2008 and suffered groin and thigh pain, that one day became so bad I couldn't stand up so I headed to a casualty department. I was immediately admitted to the area to lye down, where it became apparent that they wanted me out the bed than look to cure. They gave me Dicolfenac and i was sent home. I was able to walk but for months after I would literally have to crawl out of bed to get washed and stuff. The pain was unimaginable and would be sitting under my desk at lunchtimes through sheer and utter agony which was so hard as I was only a contracter and had no option but to work to pay my mortgage as I couldn't get a full time role. I was on 12 painkillers a day minimum. Anyway, since that incident the pain has relieved to the point I can walk but I am in agony every day. I would say an 8/9 out of ten. I cannot share a bed with my partner and I have the following symptoms. Sciatica left leg, trouble with erectile dsyfunction penis feels cold, no hard on in the morning. Pain on urination, nocturnal urination. I have numbness in my left leg. I have had discussions with my doctor undergone every test imaginable and MRIs but the doctors keep missing and no diagnosis even after five years. I think I've just got lost in the passing from one expert to the other. I have almost given up and read about Caudia Equina Syndrome Incomplete and feel this is it. If I do running or play football I can almost not pee properly or poo for a week and I've been diagnosed with IBS but don't get cramping or anything or run to the toilet just incomplete motions that are very wet and not fibre. Also pain on urination, like there is something stuck in my urethra. I feel I don't have IBS it's just not symptomatic of that at all. The sexual aspect is quite and worryingly debilitating for me, I have taken some medical tablets for it and even that can not exactly work for me at times, if I am lying on my back it's worst then for some reason.

I have seen the following emergency room, mri twice, neurosurgeon, phsyio and all seem to have such limited time for me, not as in they don't like me but literally no time, they look at my notes try to make a quick summary and cannot get you out the door quick enough without really reviewing or looking at my case notes. The specialists I have seen you're lucky if you see the same person twice, it's always their registrar or someone very basic who really has not much clue so my diagnosis has been hampered. It is the NHS in the UK and that seems to be how they operate.
I also get a definite different temperature feeling from the left leg to the right. Doctors did diagnose s1 s2 with nerve root irritation and L4 and L5 but they said I didn't need surgery. However pain is so bad, especially after exercise. As you can imagine it's a devastating aspect to my life, brought on depression and I can manage the pain, the urination problems, the bowel I've even learnt to ignore but the sexual function is so worrying. I don't want to live like this anymore are there any medical professionals who can help me. I am 36 and I am proud that despite this devastating condition I never make any excuses or tell anyone and do my work and try to do sport as i won't let it beat me. But I need help. The main issue for me is at night as I can't get sleep as the pain is bad, I have taken diclofenac for some years for this, but my heart has been beating irratic that I feel like I'm going to have a heart attack at night. I did take zopiclone for the night to knock me out which worked but doctor won't let me have that long term!

[krisnile]

You said you were on 12 different pain killers at one time? Just crouis so did u fine out what's wrong??? Keep me posted

[backanddesperate]

Hi Krisnile,

I was taking co-codrymodrol and diclofenac 2 of each at a time three times a day! I weaned myself off them but the doctors didn't care, I always worry about taking tablets

[philnoir]

You've got a set of symptoms that could indicate a nerve root or cord problem, but from your story, it sounds as if your docs are basing your treatment options on the results of your MRI rather than your symptoms. If indeed your urinary retention and sexual dysfunction are caused by nerve impingement, then you need treatment, and soon.

Whether or not you are treated under National Health, your pain condition needs to be addressed. I find it best to partner with my personal physician, what you would call your GP, in "getting to the bottom" of a medical issue. My doctor then coordinates the results from assorted specialists, and we work on a diagnosis and treatment options, together.

Isn't there a doctor you work with that you can use in this role?

Also, I don't understand your reluctance to take the diclofenac if it helps with pain at bedtime and allows you to sleep. I understand that you "worry about taking tablets," but  the risks of using an NSAID are well mitigated by keeping to dose constraints and taking with food. And if the NSAID is ineffective, there are other medication choices for managing the pain.

These points, too, should be explored with your doctor.