Extreme pain with cystoscope

[daisy9]

I have been having pain for the past 9 months in several places on my left side. I have swollen and painful lymph nodes in my groin left of my perineum and on the top of my left thigh (this causes pain that radiates down to my foot).  They often  spasm or vibrate gently causing pain. Starting at the same time, I have had painful frequent urination, waking up several times a night, and having to stop and start often. No UTI's (but several in past).



The pain lasted for 3 months daily when it first began, then for several months increased and decreased with my menstraul cycle (though the urination problems were fairly constant).  I get painful bowel movements stabs of pain left of my perinium.  For the past 2 months, the pain has been almost constant and getting worse.



For the past 2 months I have been taking 200 mg of pyridium/day, 2000 mg neurontin and sometimes vicidon.



I had laparascopic surgery 2 weeks ago for endometriosis and he found and burned one small spot on the outside of my uterus.  Immediately when I woke from the surgery I had severe pain in my urethra.  I have a dark purple bruise above my urethra (on top of my pelvic area).  That pain was very intense and I saw a urologist last week.  When she put the cystoscope in I felt unbearable pain and I shook and cried.  She couldn't get it any further without increasing the pain and she stopped.  She said she could not see any swelling.  



She is having me rest for a week, and in 2 days I am going back in to try to do the cystoscopy again (she gave me valium to take before).  I am very concerned about her reaction though.  She said she had never had that happen and that sh didn't think a catheter would do that.  She also said it was unlikely I just had an abnormally small urethra.  I can' find much on the internet about this type of pain.



I have only had a catheter once before, 10 yrs ago for an ultrasound (I have 1 child).  They left it in for 2 hrs and the pain was excruciating.



Over the past 9 months I've had an lower back MRI, vaginal and abdominal ultrasounds, CT w/IV contrast, colonoscopy, vaginal cultures, general blood tests and mono, thyroid, rheumatoid arthritis and ANA. All were normal. Surgeon said no hernias.



My primary dr said a neurologist would not help for the thigh/groin pain because the MRI did not show a slipped disc, and she is sending me to a pain consultant.  I have been unable to work for the past 2 months both because of the pain and because I can't do my job carefully on the neurontin (it helps very much, but mind is very affected by it).



I am going to start Lupron next week and I understand that endometriosis could be causing all of this pain, but I am concerned that things might get missed, lots of cancer in my family.



I would be grateful for any input, and specifically:

What tests or what specialists do I need to ask for?

Does this sound like damage from a catheter, urethral cancer?

Can the cystoscope make this worse?

Is this much pyridium ok?



thnx

[Kevin Pho, MD]

Another urology referral can be considered.  You have had a pretty comprehensive evaluation that would rule out many of the major causes of the pain.  



It may be possible that the urethra was damaged, or there are strictures or polyps.  The cystoscopy would be the best test to evaluate for these diseases - if it is too painful to do, one can consider an epidural prior to the procedure.  



Pyridium only masks the symptoms without treating the appropriate cause.  



I would obtain a second urological opinion.



These options can be discussed with your personal physician.



Followup with your personal physician is essential.



This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.



Kevin, M.D.

kevinmd_

[Linda J]

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[tinamarie76]

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