Dysesthic vulvodynia,internal massage-Suzy

[Guest guest]

Suzy,

Thanks for all the helpful info. You said you had Dysesthic vulvodynia and

vestibulitus. Mine sounds more like DV because as you said 24/7 burning-yep

that's me!!!I have never had anyone check my pelvic muscles, can an OBGYN do

it. He has never mentioned it and he hasn't diagnosed me with anything other

than the vulva dysplasia that I had, but he doesn't think thats what is

causing this, since I had it removed and its still burning. What were your

symptoms of DV and for VV. My doc mentioned I might have VV, but to me my

symptoms sound more like DV. Sometimes sex is uncomfortable,esp. when first

entering, but not painful, same thing for tampons, not painful but to

irritating to use. And the vestibule doesn't hurt when touched. I have

noticed when my hubby touched me there since the burning started its more

sensitive and irritable but not painful like many gals have.

As far as physical therapy, did your OBGYN refer you to one. I doubt anyone

where I live specializes in pelvic dysfunctions. You mentioned your hubby

does the internal massage, what exactly does he do? I might need to get my

hubby to try. Also, someone in another post mentioned you get them in the

rectum area. Why do you get them there, the reason I am asking is because

after bowel movements my burning sensation gets worse, and its not coming

from rectum, but from vagina-vulva area. Just wondered if you had same

problem.

Please let me know what your symptoms were for VV and for DV. Which one is

the Estrace for? I used it for a 3 wks and quit, because it didnt help,

should I try it and use it for longer this time, how long until it starts

working.

Also let me know about the PT and internal massage.

Thanks,

Melinda

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[Guest guest]

Hi, Melinda! Just so you know, vestibulitis can also

cause 24/7 burning. I had 24/7 burning around the

opening to the vagina, in addition to the burning on

my labia and other vulvar areas. The 24/7 burning

around the vaginal opening was a manifestation of

vestibulitis. In addition, as part of the

vestibulitis, I had/have tender points at certain

places around the vestibule (most notably, 3:00 and

9:00 and I can't seem to completely get rid of the

9:00 tenderness). The DV manifested itself mostly as

24/7 labial burning, although when I was really bad

off, the burning could be just about anywhere on the

vulva. Additionally, I had DV burning in my rectal

area, which darn near drove me nuts. In fact, it was

the first vulvodynia symptom I can remember having.

(The pudendal nerve has a branch that innervates the

rectum, so it makes sense that some of us have rectal

burning as well.)

The Estrace was for the vestibulitis, and it helped

tremendously. One day (after about 2 months of using

it twice a day), with a start, I said to myself, the

24/7 burning around my vaginal opening is gone! Just

gone. Wow. It was only then that I could truly

differentiate the 24/7 burning from DV and from VVS.

They feel different, but at that time, it all felt

like one, diffuse burning area. Estrace takes a while

to work, and the minimum recommended time is 2 months.

Mine worked well in 2 months, but some women say it

takes 4 months or more. So give it at least 2 months

before giving up on it. I'm still using it 4 months

later, BTW.

My regular ob/gyn has little to do with my vulvodynia

treatment. Most ob/gyns know almost nothing about

vulvodynia, sad to say. I see a great vulvar

specialist in Philadelphia who does almost nothing

else besides treat vulvodynia patients. She is the

one who checked out my pelvic skeletal and muscular

structures, and she is the one who sent me to physical

therapy. I doubt that most regular ob/gyns have the

training to analyze and diagnose pelvic problems, but

you never know...

As for my internal massage, if you check the archives,

you'll see we had a discussion of what my treatment

consists of very recently, within the last 2 weeks.

But briefly, the internal massage is designed to

loosen tight pelvic muscles that are accessible

through the vagina and the rectum. My physical

therapist taught my husband how to do the internal

massage, as well as some external procedures.

Basically, for the vaginal massage, he inserts a

gloved, lubricated finger into my vagina. He's so

practiced at it now that he can immediately find the

tight muscle(s) (if there are any that day). They are

usually very low in the vagina, on both sides. If I

do a Kegel, and then relax it, my husband can " follow

the muscle, " so to speak, with his finger and easily

find the hard muscles (like I said, I don't even need

to do that anymore, he's such an expert!). The

muscles will feel hard, almost rock-like. He then

gently rubs the hard muscle(s) and applies deep

pressure with that one finger, and the muscle usually

relaxes quickly. My PT and my husband do my internal

massage, but I do know some women that can get into

the proper position and do their own internal massage.

As for the rectal massage, that got started because I

had some horrible anal fissures that just would not

heal. My colo-rectal doctor told me the pelvic

muscles in the rectal area were so tight that blood

flow could not get there properly, and so even the

tiniest scratch of my anal skin would not heal. So

the rectal massage is done (by both my PT and my

husband) in the same way as the vaginal massage, only

in a different space! LOL That was a real life-saver

for me, because once I started having that massage

done on my butt, the fissures healed. I still

sometimes have rectal burning, but NOTHING like the

agony I was in a few months ago. My hubby and PT

continue to do the rectal massage, even when I feel

good, to keep the muscles loose.

Hope this info is helpful!

Suzy

--- Melinda wrote:

> Suzy,

> Thanks for all the helpful info. You said you had

> Dysesthic vulvodynia and

> vestibulitus. Mine sounds more like DV because as

> you said 24/7 burning-yep

> that's me!!!I have never had anyone check my pelvic

> muscles, can an OBGYN do

> it. He has never mentioned it and he hasn't

> diagnosed me with anything other

> than the vulva dysplasia that I had, but he doesn't

> think thats what is

> causing this, since I had it removed and its still

> burning. What were your

> symptoms of DV and for VV. My doc mentioned I might

> have VV, but to me my

> symptoms sound more like DV. Sometimes sex is

> uncomfortable,esp. when first

> entering, but not painful, same thing for tampons,

> not painful but to

> irritating to use. And the vestibule doesn't hurt

> when touched. I have

> noticed when my hubby touched me there since the

> burning started its more

> sensitive and irritable but not painful like many

> gals have.

>

> As far as physical therapy, did your OBGYN refer you

> to one. I doubt anyone

> where I live specializes in pelvic dysfunctions.

> You mentioned your hubby

> does the internal massage, what exactly does he do?

> I might need to get my

> hubby to try. Also, someone in another post

> mentioned you get them in the

> rectum area. Why do you get them there, the reason I

> am asking is because

> after bowel movements my burning sensation gets

> worse, and its not coming

> from rectum, but from vagina-vulva area. Just

> wondered if you had same

> problem.

>

> Please let me know what your symptoms were for VV

> and for DV. Which one is

> the Estrace for? I used it for a 3 wks and quit,

> because it didnt help,

> should I try it and use it for longer this time, how

> long until it starts

> working.

> Also let me know about the PT and internal massage.

> Thanks,

> Melinda

>

>

_________________________________________________________________

> Chat with friends online, try MSN Messenger:

> http://messenger.msn.com

>

>

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