Questions about PFD...

[green_the_fish]

Well, since my hydro+cysto didn't show any hard evidence of IC (glomerations, ulcers), I think my uro is starting to suspect PFD as the cause of my pain. Yet, I'm still taking Elmiron, in case it is IC. If I had PDF, it would be the hypertonicity kind, not the weak/incontinence kind.
How do symptoms of IC differ from symptoms of PFD?
If any of you have both IC and PDF, how do you experience the symptoms of both?
My main symptom right now is pain that feels like it's right in my urethra. I have a lot of pain there :( I never experience pain any higher than my pelvic bone. My urine flow is weak and hesistant unless I push really hard. I always feel like I have to push, especially with the last few drops. I rarely experience nocturia. I void about 15-20 times per day. My bladder capacity when asleep/knocked out is 16 fluid onces.
Does it sound like I have PDF?
I've been strictly on the IC diet for the past month, do you think I should go off of it as an experiment? I haven't noticed any major improvement from going on the diet, but maybe I just wouldn't know how bad off I'd be without it. I'm thinking of breaking the diet as hard as possible by drinking cranberry juice and eating pasta with lots of tomato sauce. Then, I can wait to see if my pain level increases. If it does, that points IC. If it doesn't, that points away from IC. I'm scared though.
Is that a good idea? :idea: :hmm:
They'll have to do some kind of urodynamics deal to find out if I have PDF, right? Does that involve a catheter? I can't deal with caths. I was cathed once, and I started crying and hyperventilating. I couldn't even finish a DMSO treatment I had set up :dizzy: If the urodynamics procedure doesn't involve a cath, I'm down with it.
Sorry for rambling and all! I'm just trying to figure this out.

[green_the_fish]

Okay, I've made up my mind. I'm gonna break the diet right now. I'm about to eat pasta with tomato sauce and see what happens. I'll keep you guys posted!

[lalarainbow]

Hi Green
I had urodynamics but it was for measuring bladder pressure and capacity!!! They do use a catheter and it is rather uncomfortable...and not fun! When I had mine done I did not know that I had IC.. That was dignosed later with a cysto/hydro... As for the foods...I would just experiment with one thing at a time, then it would be easier to know what might bother you... I confess I had a piece of chocolate tonight! :)
~~Pam~~

[ibtracy]

Green_the_Fish;
Hi there. I have IC, PFD, IBS, & Fibromyalgia. My pelvic floor dysfunction is what's causing me to retain urine which leads to infections. I just started physical therapy for PFD and they did a vaginal probe to measure muscle strength and tone. You're supposed to be a 0 upon insertion, totally relaxed and I was a 19 which means I'm walking around with my muscles clenched down there, because I don't ever relax them. For me, my PFD symptoms included cramps and pressure mostly. I feel based on the symptoms you've listed that you do have IC. There is ulcerative and non-ulcerative IC, meaning you don't have to have Hunners Ulcers to be diagnosed with IC. Did they do the potassium chloride (I think that's the right name??) test on you yet? I too have a very weak stream again because of the clenched pelvic floor muscles. Your urodynamics study will help your urologist decide on the PFD and that will determine whether or not you need physical therapy to correct the problem. The urodynamics study, I'm sorry, but it does include a catheter but they numb the urethra before inserting the catherter. It's more embarrassing than painful - they fill your bladder until you say you can't handle any more, then you void in a special toilet that measures your stream strength and while all this is going on, they're measuring several things in your bladder. They do insert a small probe into your rectum but for me that was what I worried about most and it turned out to be the least of my worries. It was a little uncomfortable upon insertion but then I forgot it was even there. I too push hard sometimes to get the urine out which they tell you not to do if you have PFD.

I hope the near future gives you some answers and you can soon find out what you're dealing with. Your symptoms sound so much like mine, it isn't funny. If you have any other questions, PM me, okay? All these tests and things sound so much more scary that what they really are. True the urodynamics is a bit uncomfortable but it's worth it to help the doctors see how your bladder reacts, and usually you get to watch it on a monitor with them while they're conducting the test, it's interesting to see all they can tell from a catheter hooked up to a computer.

Like I said if you have questions or want to talk more, send me a private message and I'll give you my email address. Don't worry! :grouphug: Tracy K.

[bunnymoomoo]

i've been thinking that i have PFD based on my symptoms of urinary frequency/urgency, hesistancy starting stream, and no voiding during the night. i have no pain though. well, sometimes urethral pain, but not often. so i was looking up PFD on the net and ran into a couple of links that may be helpful, especially for those who feel that their symptoms may be more like PFD than IC. one article, by Dr. Moldwin talks of how PFD can mimic the symptoms of IC (i.e sensitivity to foods).

http://www.bio-medical.com/news_display.cfm?mode=INC&newsid=47

http://www.pelvicdysfunction.ca/

[XoChelsey03Xo]

I have IC and PFD. I'm really not sure how to tell them apart. My uro basically told me that the two kind of go together. Hopefully if you go to physical therapy that will help you. Chelsey

[heiwalove]

how did your diet test go, green?

[Sarojini]

Hi Green

I have IC, PFD, fibromyalgia, myofasical pain syndrome, IBS, asthma, and migraines.... yay, what a list, huh?

Anyway, the IC and PFD can be hard to tell apart. I find that PFD causes a heavy clenched up feeling in the pelvis; it's achy and refers to the butt, groin, and thighs. It also causes a weak stream, or a stream that is difficult to start. However, with physical therapy, my PFD has improved by 30-50% depending on the test my therapist uses to check it. I still, however, have bladder pain from the IC.

Even if your pain is mostly urethral, you still might want to be checked for PFD. Clenched pelvic muscles can put a lot of pressure on the urethra and cause burning and pain there (if you read about it in The Interstitial Cystitis Survival Guide by Robert Moldwin, you'll see why that can happen).

It's true that IC and PFD go together; it's because pain in the bladder and surrounding areas can cause you to clench up; so can frequency and urgency. That, over time, can lead to PFD.

If you have the opportunity, it would be worth being checked for this ... and if you have it, physical therapy can really help relax the area and reduce pain.

[ICLori]

Hi, Green, everyone gave you excellent advice. I don't have anything to add except that my experience of being checked out for PFD didn't involve a catheter at all and didn't hurt at all.

For me, my phys. ther. (PT) put these electrodes around my lower abdomen and stuff and that told her what my muscles were doing. It was clear from that that I was not clenching or anything, and when I did a kegel type exercise, my muscles responded very well and did exactly what they were supposed to, then relaxed again, so that was part of ruling out PFD on my part.

I also remember the vaginal probe, and if I remember right it wasn't very uncomfortable at all, not even as bad as a tampon or anything, no big deal. If you have ever used a tampon or had a gyn type exam, that will be a breeze for you. Even if you haven't, I don't anticipate it would be painful for you, maybe just a bit embarrassing because of the area of the body it deals with.

Then she did a check of my outer vaginal area, pressing with her fingers, and just inside the vagina, too. Again it kind of reminded me of some type of gyn exam or something. I didn't have any sore spots at all so there weren't any trigger points for me. She also checked lots of muscles and stuff around my thighs, my tummy, my lower back, just all over the place, checking for trigger points. I didn't have any.

Anyway the exam itself for me was no big deal at all, and I hope that your experience will, like mine, be no big deal at all and not at all painful.

Hey, and if it's PFD, it's really easily treated! So that's good news, honestly! You might be feeling much better very soon!

Blessings, Lori

[green_the_fish]

Hi, all. I think my first post was a bit misleading. My uro recommended I be tested for PFD, becuase I may have that IN ADDITION to what he thinks I have. My uro says that a blood test I recently took gave him reason to suspect I have an endocrinological problem. I have an appointment with an endocrinologist on the 15th of the month. He doesn't think that PDF is my main problem, but that I might as well have that checked out as soon as the new doc figures out what my main problem is.
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Lori, the PFD test you mentioned doesn't sound that bad. I do wear tampons, but not often. I'm a bit paranoid about Toxic Shock Syndrome. I know it's rare, but I don't seem to have the best luck when it comes to heath :bonk:
The rest of the tests you guys mentioned sound icky :lmao: Just being honest! But I guess if my endocrinologist doesn't find a problem, I'll just go through with it :rolleyes:
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Thanks for the sites, Bunny :bunny: Yay, I finally have an excuse to use the bunny smiley, haha!
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Heiwalove, after being on the diet quite strictly for a month (NO food from the bad list AT ALL), then breaking it all at once for a week, I noticed no change in my pain level/frequency. So, I have to logically conclude that the IC diet has no effect on whatever my problem is.
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Thanks to all for the advice, I will keep it in mind when I next see my uro. Knowledge is power for us patients!