Health Organization for Pudendal Education

Hello, I have been reading this forum and doing my research for a few weeks. I have been having symptoms since June, but they are rapidly progressing. I saw an urologist specializing in the female urology ( not a PN specialist) here in MN a few days ago and, surprisingly enough, she gave me a diagnosis of PNE during the first visit ( not in writing yet ). I was prepared to carefully mention it, not until the end of the visit, but there was no need..
My story: 2009 - the bike accident, had a large area on my right upper buttock that was very hard for 3 months, but not painful, the CT of the lumbar spine was fine. I forgot about it until 2011, when the low back pain started, diagnosed with L5S1 severe facet joint arthritis. The sciatic pain with a really bad flare up after aggressive manulations during active muscle release therapy ( therapist worked on my groin, inner thigh, piriformis on the right side) in June. However, frequency/urgency with urination and electrical jolts in my genital area were the new symptoms this time. The rectal and vaginal pain has followed. My GP put me on Lyrica which I am increasing gradually from 25 mg at night weekly, too early to expect any pain relief. She also started me on Lexapro 10 mg about a month ago when the only concern was to help me cope with my back pain (I thought that was bad!) The urologist, who gave me the PNE diagnosis based on a thorough internal exam, my history, and symptoms, wants me to do the Urodynamics test. She also referred me to a pelvic floor PT listed on this site. The uncommon symptoms I also developed are: the foot pain and tremors in my hands and legs. Numerous MRI's excluded MS and cervical spine abnormalities. I had no luck with finding a good neurologist so far.
I am flaring up badly after that exam and not really looking forward to the Urodynamics test in a week..and not sure if I really need to go through it. My understanding is the urologist has to follow the exclusion protocol. The PT is not available until October. I read your stories and realize I that I am at the very beginning of this journey, although still in this strange state of denial.. waking up in the morning and believing for two seconds that it is gone..
I am 55 with no other health issues, active, WAS active ), work full time and need to drive for work and sit in front of the computer.. Sitting is getting very limited by the day. My gel cushions that I used for my back help less and less, I will have to try the U shape one. Meanwhile, we just had to cancel our vacation trip next month, flying is not possible. Sorry, it is too much venting, I know.
Thank you for reading, English is my second language, please never mind my likely grammar mistakes..
Lena

Welcome, Lena. Sorry to hear what you are going through. It's fine to vent -- that's what we are here for.

Not sure what the urodynamics test would show as far as what's causing your pain. My understanding is that it's typically done for incontinence. http://www.webmd.com/urinary-incontinen ... continence
I guess I would want to know the rationale behind it -- what is she trying to rule out?

Violet

I had urodynamic testing done to determine whether I had neurogenic bladder - which can present as spasms and / or high post-void residual (inability to fully empty the bladder). When I needed surgery, objective evidence of neurogenic bladder was definitely useful for the insurance; plus knowing the post void residual is important so that you and your doctor can create an appropriate plan of action if you start to get frequent bladder infections. This happens because the urine that does not empty stagnates and becomes a breeding ground for bacteria. I'm not always on here so much anymore so PM me if it turns out you have high PVR: I have great tips to deal with that. I can definitely tell you now that if your bladder is acting up, with spasms, pain, or trouble emptying, SUBSTANTIALLY increasing your daily water intake will have a positive effect in the long run.
Beware of PT's that do aggressive / High velocity manipulation - as you learned people do get hurt. But when you see the PT find out if your pelvis is misaligned (commonly called SIJD, which stands for sacroiliac joint dysfunction). If that is not her area of expertise, locate a Sports PT who treats SIJD. Refuse any further manipulations unless you know ahead of time the practitioner does GENTLE, not aggressive, manipulation - but at least rule out or rule in the diagnosis. SIJD sounds likely given the nature of the injury, is rarely visible on imaging studies, and can cause pudendal and / or bladder symptoms.

Violet, thanks for your welcoming response.
HerMajesty, it makes more sense for me now to proceed with testing. I will definately start drinking more water. Yes, I have learned the hard way about aggressive PT manipulation. I was referred to see this particular Chiro/PT by the U of M physiatry professor. He works with many athletes in the area. The pain during manipulations on my groin area was excruciating... I was told previously by other PT's that I do have misaligned SI.
Thank you for your response and your warm offer to PM you with questions.