Horrible pain is constant

[valerie michele]

I don't know what I should do. I'm in pain with in a half hour of waking and it's all day long. It feels like my bladder has a huge hole in it. .... and it probably does. The doctor who did the hydro forgot to take pictures. I am so much worse after the trauma of that procedure. I voided large amounts of blood at the hospital and at my home, then complete retention and in a foley cath for three weeks. I did not have a bowel movement until nine days after the procedure. The pain is just getting worse each day. I thought the pain was bad before I had the procedure but what I am trying to live with now is beyond tolerable. I am drinking baking soda and water all day long. This pain has also affected my legs. The muscles in my legs are very painful and tight and I also have muscle definition that I never had before. I am supposed to start instillations soon but I can not have any more trauma to my bladder. For me, trauma = damage, which = pain. I am so envious of people who have "flares". Everday feels like the worst period cramps imanginable combined with the worst bladder infection. I don't know how long I can live like this. I can't eat anything. Since the additional damage done to my bladder everything I ingest spikes the pain up higher, even hydroxizine hurts. I am in a very bad situation because I can't even show any doctors the damage in my bladder because I did not get photos of it during the hydro and I can not tolerate another hydro. I'm really scared.

[ICNDonna]

If they use lidocaine or marcaine in the instillations, it should be very soothing. Are you on any medications?

Donna

[valerie michele]

Hi Donna,

I am on several meds including antibiotics everynight (or instant bladder infection) and tried Elmiron for more than a year. Now I am trying Cystoprotek. Also pain meds, hydroxyzine, prelief (4 pills to eat the blandest of foods). Nothing is helping in the least bit. Everyday, literally, the pain is getting worse. The pelvic floor muscles are extremely tight and I have had pt for that before and that only caused intense urethral burning. I deal with that about four days out each week and take pyridium for that. Malnutrion has led to osteopenic bones now. The muscles in my abdomen are rock hard tight. The muscles in my legs are tight, painful and my knees and ankles ache. This has been going on for a while now and does not get better just worse and I don't know how far this can go before it is irreversible. I can't walk or stand long, need a chair lift and a wheel chair now. I am on muscle relaxers for this but they are not helping... just keeps getting worse and worse. I''m petrified.