Monday, January 7, 2008

A new fight to fight...Pelvic Floor Dysfunction

So, as I mentioned in my first post, I went to see a urologist that specializes in IC this morning. I went out a little less of an IC patient and a lot more of a pelvic floor dysfunction (PFD) patient. To be honest, I have mixed feelings about it as I've been working on this IC thing for a year and a half now, but I'm also calmed by the fact that it explains some of my symptoms that have been ignored until now.

Next steps:
Visit with a nurse practitioner to coordinate PFD care, review other options, etc. (tomorrow)
Start physical therapy for PFD (when my turn on the waiting list comes up)
Research the heck out of this (now until forever)

The PFD diagnosis also begs the question--is this connected with my PCOS/IR? I have a feeling that it is at least in one way. The Body Chronic moves very subtly, but if you look closely you can find the path it took. Sometimes you run into a chicken and egg problem, though and I fear that's where this will lead me.

So with that cat officially out of the bag, I feel as if I can actually focus on the PCOS/IR more than if IC were the main cause of my pain (note: IC may still be a diagnosis for me, but the PFD appears to be primary, the treatment of which could lead to much alleviated IC symptoms). I don't know why I feel somehow that I had to tackle one or the other if it were IC and PCOS/IR but with the PFD and PCOS/IR I can tackle the problem more holistically. Maybe that's something to explore in and of itself.

For now, here are some helpful PFD links that I have found thus far:
Transcript of a presentation by Dr. Moldwin from the Albert Einstein College of Medicine about PFD
IC and PFD from the Interstitial Cystitis Association
A very techinical analysis of PFD from Raul Ordorica, MD
A more narrative description from IC Advice

5 comments:

Jill O. said...

A couple of thoughts about pelvic floor dysfunction. It's like the chicken and the egg. Which comes first??? IC or PFD?? In some cases, it can begin with a bladder injury which then provokes enough pain to cause the muscles to subconsciously tighten to protect you (aka a guarding reflex.. kinda)... or it can begin with a muscle injury which, due to reduced blood supply etc. then causes the bladder to start acting up. In one case, a man fell off his roof, broke his leg, and whammo... had IC symptoms.

So, what we do know is that PFD is strongly correlated with IC... and according to research released last year by Ken Peters (Beaumont Hospital, MI), is found in the vast majority of patients. I agree with that.

If you're looking for solid resources... I have a few more suggestions.

#1 - Rhonda Kotarinos was one of the first PT's in the USA to specialize in PFD. She gave a lecture on our website that was fabulous. http://www.ic-network.com/guestlectures/

#2 - The book, a Headache in the Pelvis (4th edition) is basically the only book that covers, in depth, PFD and how it is involved with pelvic pain. Plus, it gives a review of the Stanford pelvic pain program AND offers exercises, diagrams, etc.

#3 - With PFD, you have to adjust your exercise level... and this means absolutely no bike riding except on a recumbant bike.

#4 - Physical therapy should be a slow and gradual process of relaxation. Kegel exercises, for example, are usually NOT recommended for PFD patients because they provoke yet more tension. Why tighten a muscle that's already too tight. Thus, the goal of PT is to relax those muscles and to help you recognize when they are tight so that you can nip it in the bud.

#5 We have a list of PT's on our website that specialize in pelvic floor and pelvic pain conditions. Might want to check that out at: http://www.ic-network.com/md/

As a PFD patient myself, the one thing that I can offer here is that it's very important to go slowly. The PF muscles are easily traumatized... as I learned when I did more exercises than the PT told me to do. She warned me not to over do it.. but I did anyway and, wow, did it give me a whopper of a flare. So, take PT slowly.

Good luck!

Jill Osborne MA
ICRE Support Group Leader
IC Network Founder
http://www.ic-network.com

Jill O. said...

BTW.. You can read more about the book, a Headache in the Pelvis, at: http://www.icnsales.com/Headache-in-the-Pelvis-4TH-EDITION-p-24.html

The authors also have a website of their own at: http://www.pelvicpainhelp.com

Jill :)

The Honorable Samantha Grace said...

Jill--
Thanks for the feedback! Dr. Peters is actually who I saw yesterday!

I'm going to update my PFD discoveries today after my trip to the WISH program at Beaumont.

The PFD diagnosis seems very chicken and egg related and I think once I treat the PFD there will be some IC stumbling blocks as well. But it seems to me, from the recent research I've done, that if I DON'T treat the PFD, treating the IC will be less than rewarding. Which is what has been happening for about 18 months now.

This week with Dr. Peters and his research has been a blessing.

Janine Perkins said...

How did it turn out? I have PFD and have been in PT for a year. Each time I stop I get a flare up. I say avoid sit ups and many exercises that you don't realize tense the pelvic floor. I may try acupuncture to try to relax. My symptoms also flare with stress.

Anonymous said...

PFD is so difficult to correct, especially if you've had symptoms for a very long time. PT and a good at home program has worked wonders for me. Having a great pelvic floor therapist that can coordinate treatment with your doctor is key. I'm in California and my therapist is Dr. Julie Sarton of Sarton Physical Therapy. I can't say enough about how grateful I am to have found her!