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Searching for answers

2 years 11 months ago #54338 by Chelle
Thank you. I am not so much searching for a diagnosis. I am searching for symptoms. There were several stories of women getting diagnosed only because it camp up during exams / xrays on their hips. So I guess I am grasping for straws to see if my symptoms match another persons who did find their ailment. I guess I am grasping at straws. I live in a city with great hospitals & doctors what I don't have is good health insurance to keep testing for what is wrong. I have middle income health insurance with too big of a deductible plus we pay a huge co pay on such tests. My doctor can't even order some of the tests because I can't afford them. So I am desperately trying to pinpoint which tests might be the most effective to pay for. I don't expect miracles or medical advice hon just common experience to help me pin point. Thanks for the reply. Fantastic that you help others after such an experience, keep up the good work it is what promotes healing in you and others.

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2 years 11 months ago #54334 by Alan
Sorry to read about your trials. None of us are doctors and I am not a female so, the complexity would tell me to search a major center of excellence. I say that only because all of these symptoms may or may not indicate cancer? And that is simply a guess. A Mayo's, MD Anderson, Sloan Kettering, Northwestern U, Stanford.... wherever a center is closest is where I would start. Someone else may chime with a better answer.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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2 years 11 months ago #54333 by Chelle
Hello all I am hoping maybe another person has experienced what I am experiencing or can help put me in the right direction as I am fearful that I may have a tumor on my urethra tube. Here is a brief background & my symptoms & pain. If anyone has any advice to offer on this I would be appreciative as my doctor seems to be perplexed by my pain. Thank you.

I am 48 yrs old white female
I had polyps on my urethra tube about 16 years ago that were found after 2 years of frequent UTI's that went straight to the kidneys. They dilated the tube to break them off and until about 3 years ago I didn't have any more UTI's. A little over 3 years ago I had that burn in my urethra like an infection. I had to pee a little more often but it didn't burn when I peed it was just the tube burned. I peed in cup with no infection results. It went away after a few days. I started having painful intercourse at times & it at times feels like a bowling ball sitting on my lower pelvis. I started getting pain in my very lower spine more to the left than right and was told it was my sciatica nerve. As time progressed I had 3 more false UTI tests but all the symptoms of infection but blood or bacteria in the urine. My hip feels like it goes out of place and I rotate it to make the pain stop. The OB/GYN touched a muscle near my hip and said it wasn't OBGYN related. But she doesn't know what it is so off to PT. No one has a clue. This last year has been the worse. For months I am so tired I barely get out of bed. I feel like I am pregnant with constant morning sickness but don't throw up. Nausea is something I am learning to live with. My hip & back pain improved but changed now I just get these blinding back pains when I am walking like someone just kicked me in the back and I have to stop moving to keep the pain from making me fall. It feels like a nerve is pissed off or something. I also find I clutch right above my pelvis when this pain happens. It always feels like there is a bowling ball sitting in my pelvis but this last week has really frightened me. I swore I had a UTI took the antibiotic was able to pee again before that it was little then nothing then little. BUT again it didn't burn to pee. The burn was in the tube and it was a strong throb not a burn. It ached and throbbed and felt like I was trying to pass that bowling ball through my urethra or like someone was stretching my urethra like a rubber band. I had to put a heating pad between my legs on the area to calm this pressure down. They tested my urine. No blood, no infection so no explanation. Tested it for crystals for a stone and nothing. So here I am still feeling a burn on my vulva/urethra that isn't related to OB/GYN and sick to my stomach all the time. I am peeing every 2 to 3 hours and can hear poofs of air at the end of stream. Have no energy. Weird pain but no explanations. I also have bladder loss when I laugh or cough more than ever before and I have at times had no control to bowel movements.Doctor says perimenopause. Did anyone have these types of symptoms? I am desperate to figure out which direction to take this up with my doctor next.

Thank you so much and all of you are in my prayers. May your futures be happy & loving with great health and lots of laughter.

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