Four years ago the nausea, commuting, erratic blood pressure, weight gain and blood on the toilet tissue started. My primary was wonderful but could only treat each symptom. I was already on 8 vicoden a day due to a serious neck injury so I don’t remember the flank pain. I had cystography but my doc was clueless. I did get treated for trigimonis and my symptoms suddenly stopped. I forgot all about it until about 6 months after my symptoms returned only this time much worse. The hospital I went to refused to give me pain pills or a neurology referral for a year and a half. The urology dept promised me a neurology referral if my cystography came back normal. Then when it did come back normal they refused the referral and told me to go to the emergency room. On a scale of 1-10my pain was consistently 12. When I told the nurse in urology that the pain was so bad I wanted to blow my head off they immediately sent the police, which is how I ended at the new hospital, cause once the cops heard what I’d been through they understood my pain. So I immediately got a neurology referral, pain meds and a diagnosis. Praise god, cause I almost lost my mind. I’m still totally in pain, bleeding everyday and sick to my stomach… But at least I know I’m not crazy. HELP ME START A RESEARCH PROJECT. Patti 619 992 2765

One thought on “LPHS”

  1. I understand the frustrations as I too as many have suffered pain daily for more than 20 years and as well from very early childhood. Doctors and Nurses who make statements such as you have mentioned do not seem to be informed or more to the point do not LISTEN. My Doctor thought that I may get addicted as she knew about my past which is that’ I am now as of March 13th of this year 35 years sober’ She sent me to my Nephrologist as she was worried and I explained to him how I self-managed my pain by building a tolerance to a certain level and when necessary when it was really bad and I mean over the top a horror chamber kind of pain then I would take as much as needed and when extreme episode had passed I did not run for the medication as my mind nor by body did not obsess or crave for it. I spoke after to said Doctor and still she was skeptical so flat out told her that if I wanted to use it would be Alcohol as I would be able to numb out and drugs did not do that for me. She (my doctor) then backed down and then I asked her if she were aquainted with organ pain such as kidney,bladder, pancreas and so on to which she replied no to which I said that I rested my case. They make you feel that motives are suspect. Having stated the above must say that this is why this site is so important as one cannot identify unless the one has walked a mile in your shoes. How can one relate to pain that is macabre and moves and changes in an insidious manner , a pain that never takes a holiday, how then could one know if they had not experienced it. That’s why it’s important to ask the doctor to please take the time to actually listen and that would open the door to compassion and even empathy if that were there.

    I cried myself to sleep last night as the pain was so bad. I’ve recently changed Doctors as my Doctor is too far away and we are getting older. So I’m careful about the amount I use for even high and climbing pain as I’m building a client/doctor relationship and when I go for my first visit March 25(I’ve seen him once in walk-in clinic) I will come at his request armed with material and websites he can visit that give information re LPHS . I had a very bad experience not with staff but with the LPHS a couple or so yrs back where I could not keep liquid gravol , my pain med or even sips of water down. Pain like razor blades and Knives were moving in every direction in both kidneys and after about 6 hours of that I asked my husband to take me along with the pan for the bile to the hospital and he called the hospital ahead. I could barely walk and blood pressure was dangerously high. My full body was shaking and bouncing off the table and it took about 7 bags of Demerol with gravol and suppositories to the following morning to bring me down. That’s why I try to pay close attention to things like energy level, doing too much or to little, getting upset and trying to stay mentally on the middle of the road as extremes I have found ramps up the pain. I’ve found also that it does not matter a wit weather I eat healthy or not. LPHS does not seem to notice.

    Take Care,

    glenna or multiplicity hall


Leave a Reply

Your email address will not be published.