Health Organization for Pudendal Education

New member here, looking for some advice on where to begin seeking diagnosis/treatment. Which of my doctors do I first bring my PNE symptoms up with, and is there anything specific I should ask for initially?

My background: I'm a 31-year-old female with ever-evolving pelvic issues and only a partial diagnosis of a heavy lifting-induced pelvic injury I suffered 5 years ago. (I swear doctors want it to be everything EXCEPT a mechanical problem.) It's clear that there's a mess of problems at this point -- and the PNE symptoms are just the latest in the merry-go-round. I can tell that my pelvic floor, lower abdominal muscles and lower back muscles have completely changed to support the original injury, not entirely to my benefit!

This past year it's felt like someone's plucking strings at my sacrum and occasionally stabbing me in the (oddly tense) buttocks, and has evolved to include weird clitoral/perineal sensations of buzzing/electricity and numbness, and electrical sparking, coldness and numbness down both legs. Lately, sitting results in discomfort and instant leg and clitoral numbness UNLESS I spend the majority of the day standing/sleeping beforehand. (The first time this happened, it took five days of standing only before I could sit again.) Having a bowel movement also seems to provide temporary relief. It's rough because standing actually makes some of my other problems worse.

I'd like to try PT, even though I'm worried it will exacerbate some of my original pelvic issues -- anyone from CT have experience with PT for PNE here?

Hello,

Do you have an obgyn who might refer you for PT? Do you live near a doctor who treats pelvic pain specifically? These are the two places I began.

Sincerely,
Stephanies

So sorry to hear about your situation. There are 4 PTs listed for CT off the home page and would be a good place to start given your muscle issues. There is a letter to medical professionals in the FAQs off the homepage that might help with getting your GP otr gyne to refer you for PT? The electric stuff does sound nerve related but starting with PT to see what they can do and/ or help explain what is going on is one of our suggested places to start. Good luck.
Janet

Oh gosh, quick responses. I didn't think anyone would be checking this board too often. So sorry for the late reply and thank you for responding!

I have a good obgyn I trust, and a yearly appointment coming up soon, but obviously it's not her area of expertise and she wasn't really able to help me when I was first injured. Partly it's my fault -- I couldn't really articulate what was wrong back then and didn't understand what was happening to me. (I sense my troubles this time will revolve around it being terribly embarrassing to be all "hi I'm having alternating numbness, pain and perpetual arousal why does my body hate me". In an office with an echo, no less.)

I've never asked a doctor for a referral before. Do I start off asking for one or describe symptoms and let her suggest it? Do I ask for a particular PT I've chosen, or should I let my doctor suggest a PT? (I know these probably sound obvious to everyone, but I have never had any luck getting doctors to listen to me and don't want to screw it up.)

I never got taken seriously by any physician until AFTER the horrid state of my pelvis was validated by a PT.
Your nice GYN might give you a referral, but if she was concerned but unsure how to help, she probably does not know of an appropriate PT to refer you to. Go to the HOPE homepage an click "find a PT" on the left hand menu. Depending on where you live, you might only have one choice. If you have several choices, they might be further limited by insurance. If you are blessed enough to have more than one Pelvic Floor PT in your area who accepts your insurance (very rare and i doubt it!), post here for experiences, check their website and web reviews, etc...point is, for a condition this specializd you should ask for a referral with the name of the PT you want already in your hand.
I got my PT referral from an incompetent neurologist I only saw twice before throwing up my hands in disgust and walking out...but the referral was easy to ask for. Before we got deep into my symptoms and exams, i told him, "If you want to be my doctor, there is only one thing I insist upon". So he looks at me very defensively, waiting for me to ask for a controlled substance...and I say, "A referral to this PT"...He looked sooo relieved! And gave the referral to me without another question. My insurance required me to get a new referral every month or two (can't remember), but the great thing about pelvic floor PT's is that many know other pelvic pain knowledgeable practitioners in the area. So my PT referred me to a pain clinic doc she liked, and he kept sending me referrals to the PT, and we were all set

Still waiting on my appointment, but ugh why do new symptoms have to show up now??

I've gone from numb feet when I sit to burning, sweaty feet when I lay down OR sit. I'm shivering from cold at night, meanwhile my feet are sweating straight through socks and sheets. Standing is the ONLY comfortable position now, but alas, I cannot sleep standing up.