Terrible urinary tract pain, no diagnosis.
Posted , 6 users are following.
Just over a year ago I had a terrible uti that spead to my kidneys and was resistant to my antibiotics. The infection eventually went away but the pain and uti symptoms have remained EVERY DAY for the past 365+ days. The symptoms are also getting worse- I am getting painful muscle spasms I cant control, abdominal cramps after urinating, and being in the water is basically asking for the worst pain imaginable. STI, yeast infection and all the other stuff has all been ruled out. And I always test negative for a uti. Its now to the point that I cant sit properlyor for long periods of time, or wear normal pants (which is difficult as a premed student). Crossing my legs like a lady is not even an option. My urologist tried to give me a cystoscopy but the emla cream he injected made my urethra feel like a fire pit of death. Instead of addressing my pain he asked if I took medication for anxiety (with which I am not diagnosed). I was dissapointed in him to say the least. No doctor that I have seen seems to know what to do and now my urologist seems to be convinced the pain is all in my head. Even on my calmest day I can have symptoms so bad that even tramadol wont take the edge off. My boyfriend sleeps on the couch at night when we are in school because I cry through the night because of the pain and he cant sleep as a result. My urologist seems to think my symptoms are a result of anxiety but I never had any emotional issues that I am having now until I had endured several months of intolerable pain and sleep deprivation. And despite being on summer vacation with less stress and anxiety inducing events, my symptoms are still worsening. My urologist pretty much refuses to see me until my rescheduled cystoscopy which wont be for atleast 5 months. What else can I do to get the help that I need?
0 likes, 5 replies
kenneth1955 amanda52070
Posted
My dear Amanda. I feel so sorry for what your going through. First of all. Get another Urologist. When that cream was injected and you were in pain. He should have look and checked. No doctor should treat any patient that way. Get another doctor. When you see him. Tell him what went down when they put the cream in. Maybe you can get him to do a Ridge Cystoscopy. You will be put out so you will not feel a thing. This way they can check what is going on. You need this taking care of before it's get worse. A year is to long. Now another thing. You boy friend. Tell him no sex until this is taking can of. You don't need any more stress in that area. I know in a way how you feel. I was in the hospital last November. I stopped going to the bath room so they tried to put in a catheter. I had 7 pain full catheter insertion I had one of the nurses crying. She said she had not seen someone in so much pain. They had to give me morphine. It turned out to be a infection in the bladder and my bladder was inflamed. Please check with another urologist you have the right to a second opinion. God bless you dear. Ken
HDRK amanda52070
Posted
I’ve recently had a stent put in my Ureter the tube from kidney to bladder. And after about 2 weeks of hell getting used to the stent. I thought I may be getting infection.
It was like someone twisting a razor at the end of my penis. Got really bad the pain was getting constant. Hospital gave me some antibiotics but it didn’t stop it. Still so painful when I pass urine. But my gp wouldn’t give me more antibiotics because the last sample of urine came back clear no infection. He said the irritation could be from my operation?
My advice is go to another doctor.
Throughout this process of my illness has been an absolute joke.
I’ve had hospital ring me asking if I could get in to give another sample,as my last was sent to wrong place?
My gp never had notes about tumour found on ct scan.
The list goes on.... even when I first went in gp said cos my age he won’t refer me as urgent... one doctor even said he had 2 nhs numbers for me
Long story, but I have stage 2 kidney cancer.
Don’t get me wrong I think doctors and nhs are great but so under staffed and under paid.
Some actually care and will do their best to help you. But other doctors just pass you around and feels like they just getting rid of you and next patient please.
May feel like hassles but fish around and your find a doctor that will do his best. Doctors don’t feel the pain your in and probably never experienced your troubles. Be honest and tell him it’s not good enough. anxiety don’t give off physical pain like you have. Just persevere because pain isn’t normal and will only come back worse.
Good luck
Much love x
Debbie1203 amanda52070
Posted
I will throw my 2 cents into this ring as well and urge you to see another doctor, I am not sure where you live but you might need to talk to your Primary Doctor and see if they can refer you to another urologist. The first doctor I went to was an idiot and actually hurt me badly performing a cystoscopy. The second I saw not only did the scope under a general but got a biopsy on the bladder wall that determined that I had IC (Interstitial Cystitis also known as Painful Bladder Syndrome). I feel when a doctor dismisses your symptoms its time to find another doctor to listen to you. I knew nothing about IC until I was diagnosed with it and was surprised at how if matched my symptoms and now with proper treatment I am feeling much better.
Debbie
rebeca10824 Debbie1203
Posted
Hello debbie could you tell me what treatment helped you IC?
marilyn93251 amanda52070
Posted
Have you thought of getting a 2nd opinion from another urologist: do you have any reputable Medical facilities close to you like Mayo Clinic, University of Michigand or Duke ( just to name a few)- I think you need another opinion. I don't like when doctors attribute problems to anxiety just because they cannot figure out what it is. Good luck.