Need info on pelvic floor dysfunction..

[jeanniebug]

Hi! I was just wondering..how were some of you diagnosed with PFD? Exactly what did your doctor look for, and what tests did they do? What type of doctor did you see to be diagnosed..an ob/gyn? A uro? The reason I ask is..I have alot of symptoms of PFD. I had an abdominal hysterectomy 1 year/5 months ago. Ever since I've had chronic pelvic pain, vaginal pain (did not have that prior to the hyst) and been diagnosed w/IC. My vaginal and pelvic pain is so bad, I can't have sex or work out at all. Also, I feel spasms in my pelvic area alot, and have alot of weakness in my pelvic muscles. I have even asked my urologist AND ob/gyn about PFD and they just brushed it off. Is this one of those things that some doctors validate as a real problem, and some don't? I would appreciate any insight you could offer. Thanks! :)

[rachelm]

I have PFD that was diagnosed by a urogynocologist. He did a lot of tests IE: Urodynamics, MRI, blood work, potassium sensitivity. I believe though that his diagnosis of the PFD was based on a pelvic exam where he noted constant spasms. When my I.C. flare was under control a bit he started me on pelvic floor therapy with biofeedback. The therapist had me insert a tampon size probe into my vagina and it stimulated just enough to get my muscles to contract and then it relaxed with little pulses. Then she would turn it off and have me do kegels while watching them go up and down on the screen. The point is to teach your body how to properly contract and relax the muscles so that it helps the constant spasms and builds muscle tone in the pelvic floor.

I was sent home with homework to do different types of kegels. After 6 weeks of therapy my dr. reexamined me and was pleasantly surprised that I was completely spasm free. It doesn't last forever for me as once I go thorugh a flare I have to work on getting rid of spasms all over again. I am at the end of a huge flare now where I was in total spasms unable to pee on my own. I self-cathed for a month before having a temp. interstim trial. The trial stopped the spasms and I was completely better until it came out. I am much better than before the stim but now I have some spasms back. I also have voiding dysfunction which causes the retention at times and is directly related to the PFD.

I will be starting Pelvic Floor therabpy again soon. I hope I am able to get control of the spasms as I did last year.

I hope this was helpful. PFD is real and can and should be diagnosed based on an exam, biofeedback, and symptoms. If you feel that you need to find a new dr. you may look for a urogynocologist that specializes in women's urology. I have been very pleased with my dr. ability to keep trying new things until we find something that works. It's not a quick fix and you need a dr. that will work with you on many levels to find a good treatment.

I am also on meds to help relax the muscles. Zanaflax is a muscle relaxer for smooth muscle tissue like that found in the pelvic region. I take it at night because it makes me sleepy and use it all the time for maintenence. He wants me to take it even when I'm flare free to help prevent spasms.

You deserve to be taken seriously and recieve treatment. This is not a figment of your imagination! Good luck in your search. In the meantime you might want to try doing some kegels if they don't make you feel worse.

Rachel

[tigger_gal]

My uro dx'ed me with pfd in Jan... and I was going to pt, where they did a test called biofeedback to confirm it...
I stopped pt, but will contiue after the 22nd of march.
Brat

[grace 2]

HI Jeannie, I was dx with pfd, by my dr. He did a pelvic exam with a physical therepist in the room with us. As he found tender or painful spots in me he told her where they were at . I've gone to the PT 5 times and she does inner massage and taught me how to do some of it at home. She also is teaching bladder retraining( this has been a big help for me) and has me doing stretches because my right side of my pelvis was rotated and this can cause more problems. She has been more of a help to me with self-help than my dr:)
She is specially trained for womens needs, and works with a lot of ic patients. I have to travel an hour away ( I live in a small town). It has been worth it though! It did not take a lot of the pain away, but works together with what the dr. is doing. Hope this helps you! Good luck:) Grace