Newly diagnosed with PFD... Abdominal pain?

[Daisy1211]

My doctor says I have pelvic floor dysfunction... which is nice to finally narrow things down. I am starting valium for my muscles to relax, hot baths and heating pads. I will look into a physical therapist within four weeks, she said to let the valium work before rushing into it, since it may cause pain.

I guess I am "diagnosed" with this, but if treatment doesn't work they will look into IC as well... but they seemed to think everything I said pointed towards PFD.

** I get a lot of abdominal pain, does anyone else with pfd get this?? It makes me nervous.

[kdream]

i get pain EVERYWHERE in that area from the belly button down it's not fun. did you tell the urologist about abdominal pain? it's possible what you think is that pain is really the pelvic pain. mine shoots all the way up my back sometimes, especially my lower back. my pelvic pain can be excruciating at times. it feels like the worst uti of my life. phys therapy has helped me a lot so far.

[Daisy1211]

I forgot to tell my doctor I was nervous about that... I know I checked it off when I had to fill out all my symptoms, but I dont recall him talking about the pains, they just threw me so much information about muscle spasms, medicene, and therapy I got overwhelmed.

I looked it up and read that its a symptom. I feel so relieved to hear someone else gets these pains (of course I dont wish this on anyone!)

Are you new to psy therapy? I am going to start next month. They told me to let the valium really work before going so I wont be in as much pain the first time. Im nervous it will hurt me.

[kdream]

i know it's really overwhelming! especially when it interferes with daily activities. mine gets so bad sometimes i can't do anything but lay down. the valium does help me a lot but it usually puts me to sleep haha! i was diagnosed in may with pfd and started therapy at the beginning of june. it's probably best to try to get into phys therapy ASAP because it really does help. i also took valium before my first appointment but i find it better to skip it that day so the therapist can find your tender spots and areas that need to be worked on the most. when your muscles are relaxed from the valium, its harder for them to feel the tightness in the bad areas. the phys therapy is a bit painful, but its more like a burning or stinging at first because the muscles are being stressed. they do internal vaginal work and basically push and hold on the knots for a minute to release it. for me, the internal feels like someone is rubbing out a big knot in your back. it's not too painful and nothing to be scared of because it does help a ton after a few sessions. they'll probably give you at home exercises to do yourself (internal and external). it does seem a little awkward at first but i try to remember they do it all day! also make sure your phys ther. is specialized in pfd or pelvic pain. just holding an ice pack down there really helps on bad days. i do that and use a heating pad on my lower back/stomach. hope this helps and good luck!

[Daisy1211]

Thanks ! Im nervous to start, but it seems sooo worth it if it makes that much of an improvement! Its definitely an awkward treatment... but whatever helps lol. I think I found a good one to go to (its called Body In Balance).

Its really a pain how it interferes with daily activity, Im sorry that you have to stay in because of it .. but your new as well and im sure with time youll get even more improvements!! It seems like you improved a lot in just a month or two, I cant wait to get going with this treatment!

I been using heating pads and they are amazing! I use them before bed and I can finally fall asleep

Do you by any chance follow the diet? I been trying to figure out if I need to, since im not diagnosed with IC.

[Claire_A]

kdream

The burning stinging you get with PT was that just at first or does it happen all the time? I am trying to work out if this is normal or not. I have Vulvodynia and have been in PT for 11 months and just the tiniest bit of PT burns my vulva so much but I am told to keep going. If you don't mind me asking where abouts is the burning stingning feeling?

Thanks,
Claire

[Daisy1211]

Oh so would going to the gym to work out be a definite no? Replacing it with yoga would be a benefit??!


I wouldnt mind that, I always wanted to try yoga.

[Daisy1211]

oh ok, thank you for explaining

[kdream]

yes i still get a lot of burning with it :/ but the phys therapist said its from the tight muscles and trigger spots. with your vulvodynia it sounds like it would be very painful just to touch! the burning is worse when she pushes harder obviously, and when its more internal rather than towards the opening it feels more like hugee knots instead of the burning. i also tried yoga one day and i do want to continue more. i did a "take it easy/relaxation" class so i think that is probably geared more towards what we want rather than strengthening exercises.
feel better soon!

[Claire_A]

Thanks guys,

Kdream,

I get pain inside that feels like the knots but this goes away once she gets rid of them. The burning is at the entrance and is usually afterwards and feels like a skin reaction to a chemical even though she only uses olive oil. If she doesn’t touch the skin just outside the opening at all it seems I experience less burning. The skin on my vulva is just so sensitive!

Yoga is brilliant. We do meditation at the end of ours and I come out with zero pain. This lasts until I have to get in my car to drive home|

Gym seems to get my feel good chemicals going but hurts my bladder the following day so I am sticking with yoga for now. Walking is good.

Claire

[kdream]

yes i get that same feeling its like a burning like the skin is raw on the outside. my pt said its just the muscles stretching, like a deep burn. im going to try more yoga. any other relaxation tips youve tried that helped at all? ive been so stressed since this started. im always thinking its something more than just pfd and set myself into a panic, which just makes the pfd flare. its a vicious cycle.

[kdream]

i also sometimes get random itching in my vulva. ive been to the gyno countless times convinced its a yeast infection, but it never is. the itching comes and goes and is never really bad. i cant tell if im overthinking it or my pt said it could be hypersensitivity from all the pain in that area. has anyone had similar experiences? this just makes me overthink even more! its like when the pain starts to subside, i start to concentrate more on the random itches (which its very possible i had these before all this started and never thought twice) and stress, so then the muscles tense and back comes the pain.

[Daisy1211]

I can relate to all of that... I think about worse health problems and I panic.
I actually am prescribed to Lexapro 5mg for these panic attacks.
Ive been on it for 3 years now (way before PFD), so luckly I can handle PFD much better then I would have if I was never on lexapro.

If you always worry, I would go to doctors and ask everything you need to know to feel safe. Get the extra tests to rule other things out if it makes you relax.

I actually have the occasional itch/burn of the vulva... before PFD as well. I couldnt tell if it was soreness from sex or a yeast infection... but it always went away so quick that I didnt worry enough either. It happened most in the shower... water touching it would be SO irritating. This is something that may occur for 2 days, every few months... I figured it could be irritation from sex, tampons/pads.

When I did think it was a yeast infection... I tried monistat... WORSE idea ever!!!! I was in severe pain and itching.. I had to shower to try to get rid of the monistat but it wouldnt stop for hours! Anyone else get this!?

[Claire_A]

Yep, since vulvodynia started any cream down there drives me crazy. Even if I have a yeast infection by swab and use the cream it burns. I have to use oral anti fungals only. You are not alone with that one.

[earthlady]

Years ago when I was having a lot of problems with burning and irritation in the vulva the drs.kept giving me all these creams to try and the worst one was Monistat. I burned for days after that one. I stopped all the creams at that point. Wish they would have had compounded creams like they do now that can be custom made. I found out I had a hypersensitivity to propylene glycol which is in a lot of the commercial creams and even Vagifem tablets.