Been diagnosed with PFD? I have some question for you...

[green_the_fish]

If you already know my lil' story from other posts, just skip the next few paragraphs and go down to my question.

I haven't been diagnosed with PFD yet, nor with any other urological condition, though I've had constant pain/urgency/frequency since August.
Yes, I've: had a cystoscopy with hydrodistention (inconclusive), tried the diet (no effect), had biofeedback done (inconclusive?), tried Ditropan XL (no effect), Elavil (hated it), Elmiron (no effect), Pyridium (no effect), and had my urine tested many, many times (clean).
No I: haven't had sexual relations or used dirty needles, so I can't have an STD.
Basically, the docs don't know what to do with me, so they have a deal going with me: try pelvic floor therapy. If I don't feel better by my third session with my pelvic floor therapist, then we start trying some unconventional stuff.

So, my question is: if you've been diagnosed with PFD, how long was it until you began to feel better? I mean, after you began doing the exercises and stuff. Everyone's different, but I'd like to get a general idea in terms of a time frame, y'know? Thanks :)

[bunnymoomoo]

hey greeny ^_^ let's see, my main problems have been frequency/urgency - also just general early onset of urge - i went to a physical therapist once so far and she has given me stretches and a kegel type excercise as well as a bladder retraining program. within the next couple of days, i started noticing a decrease in volume (from approximately 10+ times a day to 6-7 times a day). in turn i noticed an increase in the amount i voided. i also noticed a decrease in the severity of my urgency feeling. about a week or two later i'm feeling more positive, but now and then i might have a bad frequency/urgency day. sometimes i feel my muscles contracting and that's not so easy to control. i think "urge" is the hardest to work on though; trying to tell your brain to work with your bladder and say "You're not full, it's not time to void yet." it's hard to do the bladder retraining. i know that you have problems with pain ... i don't really have that, though i occassionally have really bad sharp pinching urethral pain, that goes away relatively as soon as it had set on. my PT says that the pinching urethral pain is also a symptom of PFD.

i think the most important thing for me to remember is that getting better, alleviating my symptoms is something i really have to "work" on and "try" ... it's not easy, and i keep telling myself that i have the will power to do it. keeping a voiding diary has really helped me feel positive because before i go to bed, i actually SEE the difference in my voiding pattern. i'm not completely normal though, but i'm persevering. so try and relax, be calm, have a strong will, and really work on getting better. if your PT didn't talk to you about "retraining" your bladder, you might want to ask her about it. it has been the most helpful part of my regimen.

~ bunny ~

[Iris5]

You should try to be evaluated for PFD by a gynecologist or urogynecologist. They should recommend that you be evaluated by a physical therapist. I would not suggest biofeedback or kegel exercises. I tried it, and it only made me worse. You may want to consider trigger point release or myofascial therapy instead. I have been doing this therapy for about 5 months and have seen great improvement. I can tell you, that my improvement did not come in 3 visits, but it did come eventually.

I can also tell you that my gynecologist, my urologist, and 1st urogynecologist all missed the fact that I had PFD. It wasn't until I went to my 2nd urogynecologist that I was diagnosed with PFD in addition to interstitial cystitis.

[bunnymoomoo]

btw ... there are different kinds of things a physical therapist will provide depending on your PFD. those with muscle tension, knots, trigger points are helped by "trigger point release or myofacial therapy." for my symptoms of frequency/urgency, my muscles are spastic ... spastic muscles are an indication of weak muscles and so i do stretches to relieve tightness in my legs/buttox/inner thigh area ... i do a kegel type excercise to help strengthen my "weak muscles."

everyone's treatment will be different. so it is important to see a physical therapist who is familiar with PFD and also IC.

[Iris5]

Besides the trigger points that Bunnymoomoo refers to, I also had classic symptoms of IC, including pain, pressure, frequency, and urgency. I also had problems with urine stream. I was also having pain in my hips, and often down my legs and up to my ribcage. I also had a problem with "weak muscles"- because of the PFD, my muscles became shortened and tight over a period of time, and therefore they were weak. Trigger point therapy and myofascial release work, in part, to strengthen those muscles and return them to a normal state. It also helps to relieve pain/pressure points by turning off your trigger points.

SInce my diagnosis of IC in April of 2003, I have tried cystoscopy and hydrodistension, diet changes, meds (including pyridium for pain, detrol for spasms, macrobid to stave off infections, and Elmiron to help the IC), and PT in the form of biofeedback and kegel exercises. The meds and diet restrictions helped keep my symptoms at status quo, and the IC did not worsen. But I didn't get any better. The hydro and biofeedback did not help at all.

I was first told that had PFD in June 2004. Since I began trigger point release and myofascial therapy (along with yoga 2-3x per week) in August of 2004, I am about 60-70% better. I have been able to add many things back to my diet, including chocolate and soda. I do not have any signs of urgency. My frequency has diminished to going every 3-4 hours. My stream is much better. My pain has mostly been limited to feelings of pressure/heaviness and has been isolated mostly to my pelvic region. There are days now where I even forget to take my meds - when I was first sick, I would have never even contemplated that! In fact, my doctors and I plan to begin weaning me off my medications very soon.

Of course, I still have days where I flare out and my symptoms return, but it's usually because I did something stupid, like eating the wrong thing. Or I find that I might flare out in periods where I am stressed out. But the flares are becoming fewer and fewer.

If you are going to attempt this kind of therapy, I would highly recommend that you don't just go to any old therapist. They have to be specially trained to do trigger point release and myofascial therapy. Some therapists say they're trained in this way, but they aren't. There are some really good recommendations on this website (such as Rhonda Kotarinos). I believe Dr. David Wise, the psychologist from Stanford who wrote A Headache In the Pelvis, also has a list of specially trained PT's around the country.

Anyway, whatever path you choose, I think the key is patience and persistence, and diligence. When you really begin to commit to something, eventually you'll find the thing that works for you. Good luck!

[bunnymoomoo]

Iris,

sounds like you've made some great improvements! *hugs* i think most physical therapists who with the pelvic floor and also are familiar with IC will probably be familiar with trigger point therapy. he/she will assess you in whether or not this will be beneficial. they will look for trigger points inside and outside that maybe referring "pain" and other symptoms to the pelvic floor and bladder. i just had an internal exam today and there was a lot of tightness in my inner thighs AND my pelvic floor. mostly on my left side. when touched it felt very RAW and uncomfortable. the therapist does a "stretch/massage" to "lengthen" it which in turn helps it relax and return it to a more normal state. this takes quite a bit of repetition, but i can do this my self. i also have to stretch my leg muscles, especially my inner thighs because those muscles are connected to the pelvic floor. it's not a coincidence that my left inner thigh and left "pelvic floor muscle" (can't remember the name @_@) are both tight and tender.
the biofeedback was just to assess the state of my pelvic floor; the feedback showed that my muscles were spastic and in a slightly high range. the pt had me do some excercises while on the biofeedback machine and it showed that i could not hold a kegel excercise (indicating weak muscles in this area), but that i could do "flicks" (quick hold release). the flicks work a different set of muscles. the muscles that were weak, were the same group of muscles that control urge, and urge/urgency is my main issue.
well, this is what i've learned from my experience. like i said, everyone's experience will be different. especially those who have IC and PFD vs. and individual who just has PFD.
btw, my biofeedback didn't place anything "inside" me, i just had electrodes placed in the pelvic floor area externally as well as one electrode on my abdomen to show how things are connected and all. it was very helpful to see this. but it was not a form of treatment, it was just to help me understand how my muscles work.

~ lots of luck ~
bunny