Good news???

[green_the_fish]

Well, I went to see Dr. H today. Dr. K reffered me to Dr. H, since Dr. K is a pediatric uro and doesn't see IC much.
So, I walk in and meet this guy. I start talking about pills (fun subject, eh?). He says that I should try to bump up my dose of Elavil from 10 mg to 20 mg, then possibly bump up the dose of Neurotin. I agree, then ask to be put back on Detrol instead of Ditropan XL (side effects). He agrees to hook me up with some.
I tell Dr. H about how my symptoms don't seem to be affected by diet. He says that this info, combined with the fact that my bladder looked okay under cysto+hydro and I don't have nocturia, makes IC very unlikely. Then why am I in pain every day :confused:...I ask him. He asks where the pain's located, and I say that I feel like it'sin my urethra. Then Dr. H says he wants to do a pelvic exam. I don't want to cuz I'm on my period (awkward...) but I agree anyway.
During the exam, he inserts a finger about halfway in to my vagina. He pushes his finger up towards my urethra, and asks if it hurts. I expected it to, but it doesn't. I'm very confused at this point! Then he pushes his finger into the left side of my vagina. OUCH! "Does that hurt?" NO KIDDING IT HURTS! So then he pushes his finger to the right side and again, OUCH!
Then his assistant is all like: I think you have PFD! :idea:
And I'm like: Me?! Huh?! :hmm:
So then she sits down and starts talking to me about PFD. It went kinda like this...
Assistant: I think you have this condition where your muscles in your vagina...etc.
Me: It's cool, I already know what PFD is.
Assist.: Okay, good.
Me: But, wouldn't I be able to tell if I had it? I mean, wouldn't I notice if my pelvic floor muscles were constantly tightened?
Assist.: I see many PFD patients, and most of them have no idea that they're clenching these muscles.
Me: WOW...
So, me and my mom are just shocked. For the past four months, we thought I had IC. We were so shocked that we ran out to the car to go discuss this new Dx... and forgot to pick up the Detrol :bonk: Well, we'll go back for it later, maybe tomorrow. I'll be going back next week to get tests done. I made them promise me that there'd be NO catheters involved! The assistant told me that I'll place this device in my vagina, then have electric monitor thingies stuck to the outside of vagina.
I'm still really confused. Really now, wouldn't I be able to tell if my pelvic floor muscles were clenched this whole time? For four months?!
:dizzy: ...

[this_sucks]

WOW! i think this might happen to me too. we have so much in common! im not sure if i have ic either....im scared :/ it would all make sense if i had this pfd. this whole thing is so stressful/frustrating/confusing. pm if you want to talk!
Katie*

[ICLori]

Hi, Green, believe it or not this is wonderful news! It's good news because PFD is completely 100% treatable. Which means you will be feeling better pretty soon!

In answer to your question - nope. Believe it or not, nope, you can't tell if you are clenched all the time down there or not. I don't know why, but you can't. It's kind of like...well, have you ever had someone rub your shoulders after a hard day at school, and you thought - gosh, that feels wonderful, I feel so much more relaxed...? It's because unconsciously you've been tensing all those muscles around your shoulders for the whole day. You weren't aware of it - at least not until you got a back rub and felt instantly better - but you were. I think PFD is kind of like that.

It's not a big deal, going for physical therapy. At least not if it's like when I went. Unfortunately for me, it really was IC and not PFD, but I am doing okay now between the Amoxicillin and Singulair.

They will teach you how to train your muscles to unclench and you ought to be feeling much, much better pretty soon. It may take some time, I imagine it can't be fixed overnight, but the good news is, you will be able to get to the point where you are completely comfortable again. Isn't that good news? :) I think it is!

The Neurontin and Elavil will probably help you feel more comfortable until your muscles are relaxed again.

Blessings, Lori

[Iris5]

It's very possible that you have PFD for 4 months. It could have been in the beginning stages for a lot longer than that without you realizing it.

The painful points in your vagina that the doctor is pressing on may be your trigger points. The only thing I can suggest is be careful of what type of PT that you try. I started doing biofeedback (where they put the probe into your vagina and it's hooked up to a machine and they test you strength of drop and release, and then this probe vibrates for a little bit) and kegel exercises. I did this for about 6 weeks, and it actually made me worse.

Now I do trigger point release therapy (see the guest lecture by Rhonda Kotarinos, PT) who can describe better what that is. She is who I see now here in Chicago. With this type of PT and yoga 3-4 times a week I have seen great improvement in my muscles over the past 4 months.

Of course, this is an option that you have to explore for yourself. Everyone is different, and the biofeedback may help you. But before you begin, I just wanted you to know that you have other options/types of PT available.

Good luck!

[green_the_fish]

Thanks for all the responses.
Ever since I saw Dr. H, I've been concentrating on relaxing my pelvic floor muscles, as directed. Well, I was doing this the other day and I URINATED ON MYSELF :help:
Luckily I was at home, but it was still scary. What if that had happened at school? I think I'll have to wear Depends :shake:
Is this... "normal"?

[this_sucks]

eek. your scaring me i hope i dont have to do this! i just started wearing serenity pad thingies even though i never have peed myself but it makes me feel more comfortable and they arent like depends or anything its like a period pad. ugh so embarrassing haha well i guess i will have to deal. tell me if anything is working though!

[dancemomof2]

I am so glad you finally got a diagnosis. I just wish you didn't have to suufer so long to get one. Good Luck fishy. You are a great girl.

[Iris5]

Maybe you're relaxing them too much? You should definitely talk to your doc and physical therapist about it at your next visit.

[JAMIEL]

I am not surprised by what has happened with your diagnosis. I am going through a similar situation (although I am much older than you and have had three children). I was "diagnosed" with IC in January following surgery for an ovarian cyst. In a period of three months I had a bladder infection, pregnancy, miscarriage, & ovarian cyst removed. Needless to say my pelvic floor went through havic during that time period. The uro that diagnosed me with IC did NOT do a pelvic exam. I did have a cystoscopy with hydro which showed pinpoint bleeding and mast cells....I went to see Dr Moldwin in February who did the pevlic exam and diagnosed me with PFD. I am still under his care and he is not convinced of the IC diagnosis even though I had the cystoscopy. Sometimes a "healthy" bladder can look like IC when it is stretched (distended)...I am currently seeing a Physical Therapist (under his recommendation) who specializes in PFD and take Elavil and Flomax. I used a E-stim machine at home for about two weeks as well. My frequency has gotten a little better but I still have pelvic pain. I think that IC can under some circumstances be hard to diagnosis especially since the symptoms mimic other things (PFD, Endometriosis to name a few)...I may have the IC with the PFD but Dr Moldwin made it VERY clear to me that you can not treat one without treating the other and expect to feel any better. If you have his book read the section on PFD. I have followed his recommendations and seem to slowy be getter better!!!! I am seeing a Endo specialist tomorrow to rule it out as a contributing source of my pain.

I hope you are on the road to recovery!! It sounds like you might of finally found your answer! You are an amazing young woman and I am truly inspired by your strength!

Hugs,

Jamie

[ICLori]

Hi, sweetie, it might be a good idea just to wear one of those bladder pads, just in case. I think it's just that it's hard to know how much to relax those muscles without relaxing too much, is all. Could happen to anyone. But you are keeping a really good attitude, and doing everything right, so I'm sure you will be better soon!

Blessings, Lori

[JenG]

Good news about the PFD! :) I had the same problem with my muscles being constantly tighted. When the doctor first pushed on the muscles it hurt a lot and he said they were hard as rocks. After 6 weeks of treatment my muscles have softened up quite a bit.
Don't worry about the therepy. It does not hurt and is actually really good to see how your muscles are tightened and relax on the monitor. The first time I did mine, they couldn't figure out why when they said to tense the graph went in the direction of relaxation, and when they said to relax, it went in the direction that I should be tensing! I was constantly in the state of tensing my pelvic muscles and didn't even know it? :bonk:
Good luck and hang in there, it does get better.
Jenny :)

[green_the_fish]

UPDATE:
My pelvic floor therapist did the biofeedback.
My "PFD" (?) was at about a 2.5. When I noticed this, I got really upset. 2.5 is normal, I don't have PFD, I still have a mystery aliment! However, my pelvic floor therapist says that 2.5 is the high end of average, and it includes all age groups. At my age (15) my "normal" might well be lower (maybe around .5 or 1) since I haven't had sex, given birth, or really used my vagina at all.
She said that based on my symptoms, the pelvic exam, and the biofeedback, she would guess that I have PFD. She's having me do a modified form a Kegel, which she described as followws:
"A renowned physical therapist, Janet Hulme, discovered that by opening and closing your legs/knees, the obturator muscle automatically raises and lowers your pelvic floor. This exercise helps to strengthen and relax your pelvic floor, which aids in problems with bowel and bladder dysfunction."
She explained the exersise, and told me to do 3 repitions 3 times per day. The PFD therapist said that we'll just have to see if I get better after PFD exersises. If I don't, it's back to the drawling board.
I hate it when a test comes back inconclusive. My bladder looked "a little red" on my cysto+hydro, but still in the normal range. My pelvic floor seemed "tight" on the biofeedback, but still in range. Science... :rolleyes:
I told her that the Elavil made me feel like my mind is trapped in a fog, and she gave me permission to go off of it if I chose. Actually, she gave me permission to stop all my meds. I didn't take my Elavil (20mg) or Neurotin (100 mg) last night, and I finally feel properly awake, for the first time in over a month. My pain level hasn't changed. I've also stopped Ditropan XL and Detrol, since they weren't really helping either. She said I should probably stop the Elmiron too, but I don't want to. Now I just take 1 or 2 a day, without worrying about the food anymore. I have completely stopped the diet, and there's been no difference in my pain level.
I hope that my PFD therapist is a good guesser. If not... :toilet:

[desolationangel]

I would keep hope. sometimes quantitative measurements are so arbitrary; i'm not "legally" hypothyroid but i've got all the symptoms as well as having my levels *almost* low enough to count, so my dr. says i have hypothyroid. it could be that "normal" for you is very low, and that you're very sensitive.

don't give up now!