Pelvic Floor Dysfunction?

[aelc]

I had my cysto/hyrdo/ biopsy done last week and whe nthe Dr. came in to see me he said i indeed had IC but that i also have pelvic floor dysfunction and he would talk to me about it at my follow up appointment on the 8th. What is it? I have never heard of it. I was trying to do some research on it but i really haven't found a site that can tell me about it. Can someone lead me to a website or tell me what it is. Thanks!

[JenG]

Hi :)
My doctor diagnosed me with both IC and PFD as well. He explained that the pelvic floor muscles are in spasm, and extremely tight so it causes pelvic pain and effects all pelvic functions (ie bladder, bowel, vaginal). He did an internal exam, touched these muscles and I immediately felt pain. I have been doing PFD therapy for 4 months, and my muscles are loosening up and the spasms have lessened. I have learned how to relax the muscles that have been tight for so long.
Check out this article that the ICN posted:
http://www.ic-network.com/iclifestyles/june02.html

Hope this helps! Good luck with your treatment!

[Flarin-up Vicky]

How did the doctor do the test exactly,like what did he do?

[Katrina]

http://www.google.com/search?hl=en&domains=http://www.ic-network.com&sitesearch=http://www.ic-network.com&q=Pelvic+Floor+Dysfunction&spell=1

There is a lot of info on it

http://www.ichelp.com/RelatedDiseases/PFDAndBowelProblems.html

A lot of us have IC and pfd....sorry you do. :grouphug:

[aelc]

Thank you for the sites. I learned alot from them.

[Sarah05]

I found out that I also had PFD (no wonder I couldn't do kegels no matter how hard I tried--those muscles had been tightened for goodness knows how long!) I was sent to a physical therapist who specializes in PFD a year and a half after my symptoms started.

While the physical therapy has no effect on my bladder, it has had a HUGE effect on other areas of abdominal pain. It is very worth the try.

Sarah

[JMichele]

Do you have to be awake for a Dr. to test you for PFD? Or can they do it while you're out for a procedure? (just wondering how they diagnose you)

[kelly McC]

I recently started using a tens unit and it has helped my pfd ..
I started with pt
Kelly

[Sarah05]

I was awake--basically it entailed the PT looking--or rather feeling--muscle tension. I was tense where I should have been loose and vice versa. Tension in that area definitely does not help bladder irritation.

Sarah

[JMichele]

Thanks, Sarah!

[DanaW]

I was dx'd late last year with PFD also. But, I had a more extensive test done to dx. me. It is called Uro-Dynamics. You might want to check into it.....Dana

[Sarah05]

I actually had that too--I just forgot. It actually took a second doctor looking at my records to put me in physical therapy; the first just ignored it. Second opinions are always a good thing! I have been such a squeaky wheel during this whole process.

Sarah

[DanaW]

ok. Good choice on the second opinion.....good luck DanaW.

[CudaGirl71]

I had to go to another urologist and on the intial visit he diagnosed me with PFD. All he did was in the examination room he did an internal and when he was in there it felt like he had a hook and was trying to pull the muscle out thats how tense/tight my muscles are. Afterward I asked my husband what exactly was he doing and he said all he did was touch it and I went throught the roof. For me it was excrutiating pain. I now go to a physical therapist. I dont know if its working yet but I'm not going to give up!

[Sarah05]

Good for you. Does your physical therapist have you doing streches twice a day? That's what mine did (I was very tense "in there" as well, and was told that it was no wonder I've never had that much fun with sex). But definitely keep with it. A combo of that, Elmiron and a couple other drugs, and a very strict version of the diet have started to help me. I noticed a difference with the physical therapy in about six weeks. Then I got "down" and lazy for a little while and slacked off of the therapy, and noticed myself getting worse again. So it is definitely worth giving it a good chance!

[CudaGirl71]

Thanks Sarah, The physical therapist I'm going to is taking it slow with me. She says that I'm very weak and since I'm having instills with the therapy she, and me too feel that it would be too much for my bladder to handle. So, this is what I dont understand, I went to her today and she was pushing and trying to open up the muscles and I can understand that but she was really close to my bladder. I have had 3 c-sections and she wants to work on my scars next week in particular on my right side which is where I have the most pain. I'm not really sure thats going to be a good thing. I was hoping to talk to my uro about this and see what he says about it. I mean if it helps thats good but I dont want her to do anything thats going to make my bladder worse, ya know what I mean and I know you do!! I've been taking Elmiron for about 5 years now and I noticed a difference in a couple of weeks of taking it but my IC got worse over the years and for the last, I'd say about the last 2 years I've been at my worst. I've gone for Elmiron instills too and they didnt work. Being cath'd made my bladder flare. Now I'm going for Dmso cocktails and they are worse than the Elmiron. I burn down there, I've had a burning/hot sensation all around my pelvic area and pain for like 2 days after the treatments. I'm going on my 5th treatment but my uros office made a mistake and only scheduled me for 5, I'm not complaining :) I'm on a different pain med now, its the Duragesic Patch. It seems to help me. I tried to put 2 on (per my dr's advice) but my system is too sensitive and I think it seems to be too much for me but I was still in pain so I'm wearing the patch and taking percocet when the pain is too much. The patch is 25mg. and the percocet is only 5/325. So, I'm all messed up.....lol I guess I'm gonna have to wait to talk to my uro cause at this point I really dont know what to do :( (Oh, I've been to the physical therapist for 3 weeks now, I forgot to mention that.)

[lindy lou]

I was DX with PFD 5 weeks ago and started myofascial massage for the tight muscles as well as instills of lidocaine and Sanctura. The nurse-practioner recommended I do biofeedback but my insurance wouldn't pay the $600 for the home unit. Instead, I purcahsed a wet of vaginal dilators and do my own exercises while taking a warm bath. It has helped tremendously for me and I feel the best I have in over a year. Sounds like you have a lot of issues to deal with. I hope the PT works for you but take it slowly, one step at a time. Too much at once is likely to cause more pain. Good Luck!

Linda

[Portia17]

How do u get diagnosed with pfd? Does the gyno or uro see that on a check up?

[DanaW]

You have to have a specific test done. Uro-Dynamics....I had mine done by a Urologist. Not every Uro. does this test. So, you would have your Uro. check to see who does this specific test. (if he/she doesn't do it themselves)

Dana W.

[Portia17]

I had uro-dyanamics test and every other test under the sun so I guess I do not have it

Thanks

[green_the_fish]

Um... uro-dynamics? I've never heard of that being used to diagnose PFD. The method that I always hear of bio-feedback. What's your source on this?

[Portia17]

How do u get diagnosed with pfd?

[CudaGirl71]

Portia17,
My urologist did an internal and touched the muscles and I nearly jumped off the table and cried for about 2 minutes. My husband was standing there watching the uro and I asked my husband what he did because it felt like he put a hook up there and started to pull but my husband said all he did was touch it like he was poking inside. Then the uro said that I had PFD and that Physical Therapy was the only thing that would help the pain. Unfortunatly for me at this point Physical Therapy cost to much for me but I did learn some excersises (sp?) the couple of times that I was able to go to PT. So at least I have something to take with me to use at home. I hope this helps a little.
CudaGirl71

[green_the_fish]

I also had the pelvic exam that CudaGirl71 is talking about. It hurt when the doctor pushed on the sides, but not the front and back. Because of that, they said that I "may" have PFD, but were unable to diagnose me due to the fact that I don't have the typical symptoms. Odd, huh? :hmm:

[DanaW]

Green the fish,

I went to a special Uro. for the Urodynamics test. They put electrodes on your muscles plus the other things I described on another post. The Uro. got my results and dx'd me with PFD. Now, I am going to a physical therapist, who does Biofeedback as a treatment for PFD. My first appt. is Friday.

Dana W.

[icsue]

I'm been doing yoga for 7 years. I think it has improved symptoms. There have been times however it's been painful for my back and bladder. In general I believe yoga has helped a lot.

[LisaS]

My story exactly....just had my first hydro/cysto/biopsy. Was so out of it after waking up from the surgery that I barely remember my Dr conversation. But He said I have PDF and gave me some info about it. Said he would refer me to a Dr who could help with that.

So overwhelming...just beginning to deal with the IC ...now PFD too....auuuuuuuuughhh!

[massagedoula]

My PFD was diagnosed first by my gyno the day before my IC started. She did my yearly checkup and said that she thought I had PFD from the muscle tone inside my vagina. The next day my bladder symptoms started. I don't know which came first, the chicken or the egg....but then when I went to a urogyno for my IC, she did my pelvic exam and said that I had PFD. By then I had aleady started with a physical therapist. I go every week ad she has been very helpful with working on the muscles surrounding the urethra, among other things. Her work on the muscles around the urethra have greatly lessened my urethral burning. However, my physical therapy has not helped the pain in my bladder nor the frequency, but at least I am not burning all the time. Also, she got me an RS-medical unit (fancy TENS unit) for me to use at home...until my insurance wont pay for it anymore then I will panic!

[Portia17]

I got two things

A tens unit for walking around and a interferntial stimulator for at home because the interferential stimulator needs to be plugged into a wall

Both work well

[tulsateacher]

What yoga seemed to help the most? I do a couple of yoga tapes (Rodney Yee: YOga for Abs, Poweer Yoga and a basic sun alutation one)--do you find certain poses help more?

[icsue]

They say you should do the more gentle types but I don't. I do everything. Anything that opens my hips seems to help. (Bikram, Ashtanga)

I remember sitting on the floor with my legs open caused so much pain in my bladder in the beginning but now the pain is mostly in the back of my legs. My bladder seems to have improved. Of course it's been 7 years. I just think staying active and breathing and not sitting at home thinking about your condition is very helpful. My lower hips have always been very congested. I think that's where the IC came from. Now that I can finally bend foward some, I think I'm making progress. I could be wrong but I think when I can bend forward all the way my IC will go away. If it doesn't go away, I'll just have to live with it but I enjoy the yoga anyway.

[icsue]

My physical therapist and my doctor think IC has something to do with your back. They're not sure how but I have exercises I have to do from the phsycial therapist also.

[als]

Do any medications help with the PFD? Also, did the therapy make your bladder worse?

[massagedoula]

No, it made my bladder either get better or stay the same, never worse.

[Just]

I just had that urodynamic test, they feel it 's just muscle spasms in the bladder. was recommended to try kegal exercises. They (dr.s) keep changing the diagnoses, it's frustrating but i'll keep searching. My cysto is next!!!
Has anyone gotten some relief?

would love to sleep!!
just

[Sarah05]

My therapy did seem to aggrivate my bladder a little bit, but only at first. Then it seemed to help it--relaxing the muscles around the bladder, increasing circulation, that sort of thing.

Sarah

[sjackso]

I would recommend you take a look at the most recent edition of A Headache in the Pelvis, 3rd edition. The premise of the entire book, written by a urologist at Stanford University, is that PFD causes IC and many other pelvic pain syndromes such as Vulvodynia and prostate problems in men. According to his theory, stress causes some individuals to tighten their pelvic floor muscles, and that tight pelvic floor muscles cause decreased blood flow to the bladder and other pelvic organs. This in turn leads to deterioraton of the organ. Thus, by stretching, we increase the blood flow to the area and help to rehabilitate the injured area. There are 9 stretches outlined in the book that are intended to stretch and rehabilitate the pelvic floor muscles. I started doing them about two months ago and noticed a difference in pain and frequency immediately. I have done the stretches twice a day for the past two months and am almost pain free now (I should add that I also take an Algonot product and an aloe vera product for IC). The book was an incredible resource and one of the only books on pelvic pain/IC I have read that makes you believe you can gain control over your symptoms. Moreover, as a Ph.D. scientist, I found the theory, quite plausible and the data they have supportive of the theory.