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My name is Molly. A couple of years ago I hurt my back. To make that long story short, I shall tell you that I have 2 prolapsed (burst) and leaking discs in my lower back, in my lumbar area. The gel inside the discs leak out and cause horrendous pain. If you are familiar with the spine, it is my L4-L5 and L5 - S1 that are prolapsed and leak. In November the pain was so bad I thought about killing myself. I went and had an MRI and a very skilled radiologist saw something and asked if we could do the MRI with contrast. I said yes. He discovered that I have a cyst about 4 inches long growing ON my spinal cord in my middle back, my thoracic area, T3-T8. He also discovered I have disease in my cervical (neck) which causes me to exhibit signs of Hoffman's disease, where my hands tremble and I drop things.
I've seen 4 surgeons and no one will operate, they all say it is too risky, as the cyst cannot be removed, for the risk of paralysis. They tell me the cyst will eventually lead me down the road to paralysis anyhow and when the disease in my neck gets so bad I can't button buttons, or I cannot walk well, THEN they would take the risk.
I've been on heavy narcotics for the past 2, 3 years now, very heavy meds. Since January, I noticed that I started having trouble peeing. I just could not get my stream to start. Sometimes it was easy to 'go' and sometimes it took quite a while. Then, it started taking longer and longer. One time, it took me 18 minutes before my pee stream would start. I always thought I just had a "shy" bladder because I can't pee in front of others, and have trouble in public bathrooms. But when it got to the point where I was about to burst and couldn't pee in a public bathroom with other women, I started to get really worried. It would take me sometimes 3 or 4 trips to be able to go, and I'd have to be in the bathroom all alone. Women who had to pee were probably wondering what in the heck I was doing in there. I would sometimes silently sit there and cry. And the pain in my lower back would cause my legs to go numb and it was awful. It only got worse and worse.
I finally told my pain management specialist, my Neurologist about this, and decided to go see a Urologist. He sent me to have an ultrasound. The radiologist said he found some 'abnormal growth' in my bladder, along with blood in my urine and atypical cells. Everything I read online said CANCER. But I was prepared mentally for it.
So last Thursday I went to the hospital and my Urologist performed a Cystoscopy, along with a perfunctory biopsy and he dilated my urethra since I told him I just couldn't get my stream started. He prescribed for me antiobiotics of Cipro and a special pain relieving medicine that targets just the bladder and urethra, called Pyridine. I think I spelled that correctly, not sure.
Anyhow, it's been a week now, and I am no better. In fact, I am worse. I am having a pain in my bladder, it feels like where the urethra and bladder meet on the inside, NOT the outside of my body. I have no burned when I pee, but I have a terrible pain when I first start to urinate and then a much worse pain when I finish urinating. The other night it took me 40 minutes in the bathroom to pee, in various positions, standing up--that really hurt, squatting---that makes my weak legs go to sleep and I can hardly get back up. I can sit on the toilet, I have handrails on my toilet, those help a lot, but I still cannot pee. And the harder I try to push the urine out, the more my lower back goes to burning and hurting.
Like I said, I am already on heavy doses of narcotics, plus now this pyridine. My bladder hurts when I sit down, and if I walk too hard, each pounding step, I can feel it in my bladder.
My biopsy came back normal. My doctor didn't find any abnormal growth like the radiologist indicated. I have no answer as to why they said there was blood in my urine.
Should I still be feeling this pain after a week like this? Shouldn't I be having a much easier time getting the urine out since my doctor dilated my urethra? It was so bad yesterday that I had to call him, and he called me back, and I explained it to him, how I hurt, and how I can't pee any better, in fact, it's worse, and I mentioned my spinal problems, my cyst growing on my spine, and he said those could very well be part of the problem. But this PAIN in my bladder--- what is it? Why does it hurt so much when I am pushing the last bit or urine out of my bladder? I finally found a position tonight upon where I have to sit on my stool in my bathtub, put some water in the tub, and straddle the stool the long way, with my butt off the backside of the stool, and my back against the wall, and after what seemed like 20 minutes I was able to empty my bladder out in spurts, as well as emptying my eyes of tears. I am awful distress. I am overloading on the pain meds, my morphine and lortabs and I don't know what to do!! I will see my Urologist Tuesday.
It has come to the point where I am ready to learn how to do that home catheterization technique with those small little catheters that you use a couple of times and toss away. I never thought I'd ever want to even TRY such a thing, but I can't take this. It is horrible when you wake up from a night's sleep about to burst and in such back pain already and then can't pee!
Does anyone have any ideas or words of consolation for me? I sure could use them. I started taking a new anti-depressant, Cymbalta, about 3 months ago, and I swore, I felt so much better, that stuff literally saved my life, but now I'm starting to feel depressed again. I feel as though my friends think I'm some kind of hypochondriac, but I'm not. My MRI's clearly show my burst discs and the cyst which is putting severe compression on my spinal cord. And I'm lucky my neck isn't hurting, but I am dropping things a lot more than I used to. I just want to be able to pee again. What can I do? What can I tell my Urologist?
Please, any help, or advice, or wisdom, would be greatly appreciated as I sit here crying while typing this. I feel like I just can't take much more of this. Thank you for reading my story. ~Molly
I've seen 4 surgeons and no one will operate, they all say it is too risky, as the cyst cannot be removed, for the risk of paralysis. They tell me the cyst will eventually lead me down the road to paralysis anyhow and when the disease in my neck gets so bad I can't button buttons, or I cannot walk well, THEN they would take the risk.
I've been on heavy narcotics for the past 2, 3 years now, very heavy meds. Since January, I noticed that I started having trouble peeing. I just could not get my stream to start. Sometimes it was easy to 'go' and sometimes it took quite a while. Then, it started taking longer and longer. One time, it took me 18 minutes before my pee stream would start. I always thought I just had a "shy" bladder because I can't pee in front of others, and have trouble in public bathrooms. But when it got to the point where I was about to burst and couldn't pee in a public bathroom with other women, I started to get really worried. It would take me sometimes 3 or 4 trips to be able to go, and I'd have to be in the bathroom all alone. Women who had to pee were probably wondering what in the heck I was doing in there. I would sometimes silently sit there and cry. And the pain in my lower back would cause my legs to go numb and it was awful. It only got worse and worse.
I finally told my pain management specialist, my Neurologist about this, and decided to go see a Urologist. He sent me to have an ultrasound. The radiologist said he found some 'abnormal growth' in my bladder, along with blood in my urine and atypical cells. Everything I read online said CANCER. But I was prepared mentally for it.
So last Thursday I went to the hospital and my Urologist performed a Cystoscopy, along with a perfunctory biopsy and he dilated my urethra since I told him I just couldn't get my stream started. He prescribed for me antiobiotics of Cipro and a special pain relieving medicine that targets just the bladder and urethra, called Pyridine. I think I spelled that correctly, not sure.
Anyhow, it's been a week now, and I am no better. In fact, I am worse. I am having a pain in my bladder, it feels like where the urethra and bladder meet on the inside, NOT the outside of my body. I have no burned when I pee, but I have a terrible pain when I first start to urinate and then a much worse pain when I finish urinating. The other night it took me 40 minutes in the bathroom to pee, in various positions, standing up--that really hurt, squatting---that makes my weak legs go to sleep and I can hardly get back up. I can sit on the toilet, I have handrails on my toilet, those help a lot, but I still cannot pee. And the harder I try to push the urine out, the more my lower back goes to burning and hurting.
Like I said, I am already on heavy doses of narcotics, plus now this pyridine. My bladder hurts when I sit down, and if I walk too hard, each pounding step, I can feel it in my bladder.
My biopsy came back normal. My doctor didn't find any abnormal growth like the radiologist indicated. I have no answer as to why they said there was blood in my urine.
Should I still be feeling this pain after a week like this? Shouldn't I be having a much easier time getting the urine out since my doctor dilated my urethra? It was so bad yesterday that I had to call him, and he called me back, and I explained it to him, how I hurt, and how I can't pee any better, in fact, it's worse, and I mentioned my spinal problems, my cyst growing on my spine, and he said those could very well be part of the problem. But this PAIN in my bladder--- what is it? Why does it hurt so much when I am pushing the last bit or urine out of my bladder? I finally found a position tonight upon where I have to sit on my stool in my bathtub, put some water in the tub, and straddle the stool the long way, with my butt off the backside of the stool, and my back against the wall, and after what seemed like 20 minutes I was able to empty my bladder out in spurts, as well as emptying my eyes of tears. I am awful distress. I am overloading on the pain meds, my morphine and lortabs and I don't know what to do!! I will see my Urologist Tuesday.
It has come to the point where I am ready to learn how to do that home catheterization technique with those small little catheters that you use a couple of times and toss away. I never thought I'd ever want to even TRY such a thing, but I can't take this. It is horrible when you wake up from a night's sleep about to burst and in such back pain already and then can't pee!
Does anyone have any ideas or words of consolation for me? I sure could use them. I started taking a new anti-depressant, Cymbalta, about 3 months ago, and I swore, I felt so much better, that stuff literally saved my life, but now I'm starting to feel depressed again. I feel as though my friends think I'm some kind of hypochondriac, but I'm not. My MRI's clearly show my burst discs and the cyst which is putting severe compression on my spinal cord. And I'm lucky my neck isn't hurting, but I am dropping things a lot more than I used to. I just want to be able to pee again. What can I do? What can I tell my Urologist?
Please, any help, or advice, or wisdom, would be greatly appreciated as I sit here crying while typing this. I feel like I just can't take much more of this. Thank you for reading my story. ~Molly
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