My visit to the specialist (relatively long)

September 15, 2007

Well, I'm back from my trip to Ann Arbor to visit the U of M to see

Hope Haefner. I waited an hour to get into the office, lol, then met

with Saunders, her partner. She did the normal background

run-down, then did the q-tip test, and tested me internally for pain

points, which no one had ever done, so I was ill-prepared for the

excruciating pain that would follow. Too fun. And they took a yeast

culture, which they do for all their new patients. So they confirmed

my diagnosis of vestibulodynia, and apparently I have some vaginismus.

Fantastic. Then their sexual health counselor came and talked to me

(they do that with all their new patients), and she's the first person

to actually take my hormonal imbalance theory seriously. I know it

didn't cause my vulvar pain, but still. She did think that my initial

vulvodynia presentation, of lower ab pain, was weird, and that I most

likely need physical therapy, but that I couldn't get a consultation

until January, because they can't do all the treatments together,

because they won't know what helped then. The social worker also

recommended therapy for my depression (I've been incredibly depressed

as a result of the pain, and the residual weight gain-only 5lbs, but

that's a lot on a 5'4 " frame), but I'm not sure that one'll happen,

because that'll be my second time in therapy, and I'm not sure I'm

ready to admit defeat yet, lol.

So, essentially, something I learned today that I didn't know before:

apparently, if you have scoliosis, you are susceptible to pelvic floor

dysfunctions. In my case, my pelvis is tilted as a result, which puts

pressure on muscles and nerves, etc. Didn't know this bit of info, so

I thought I'd pass it along.

And treatment-wise, they're upping my dose of Elavil to 100mg (I'm on

25mg currently), and that compound-ointment medication that they

prescribe...I don't remember what she said was in it, specifically,

and I won't get it until next week, because it has to be made in a

special compounding pharmacy.

And that, was my first trip to the specialist! Anyone else been to

see ? Use the compound medication (I know some people here do,

but I can't remember who-sorry!!)? Anyone doing pelvic physical

therapy close to/in Indianapolis? I can't keep traveling to Ann

Arbor, I'm at school at Purdue, and broke college students can only do

so much Also, anyone read anything from Irwin Goldstein, or had

any experience with him? I was told to research his work about birth

control and vulvar pain.

Thanks for reading! A bit long, but I'm excited b/c it's my first.

Beth

September 16, 2007

My theory comes from the fact that the first time I went on birth

control, it wasn't because I was sexually active, but because I was

having my period for three straight weeks with two days in between.

When they first put me on the pill, they put me on Ortho Tri-Cycline,

or something to that effect, which was apparently strong for a 150lb

woman, and I weighed 88lbs at the time (long story). I developed

really nasty mood swings and mega-nasty cramps when I did get my

period, so when I said we needed to change it, we went through 5 other

kinds of pills before deciding that I should just go off everything

and reset myself, which meant going back to bleeding for freaking ever

again, and when I did go back on the pill, it took 3 tries to find the

right kind. And recently, I was taking the pill continuously to try

to stop my menstruation because it hurt so badly to deal with, and it

wacked me out again to where i was bleeding continuously and having

the crazy mood-swings, and even after I went back to taking the pill

normally, the mood swings still hung around and the general sense of

craziness. And for that 6-month window when I wasn't on the pill, I

still had all the mood swings...not fun. But when I tell people that,

and the fact that I think the first pill I was on started all this

mess, I either get ignored or told that " it was just the wrong pill

for me. " But I haven't felt " right " since then, and can't get anyone

to take me seriously about it. The social worker I told did tell me

that I might need to see an endocrinologist, but that I have to wait

until January at the earliest, and even then I have no idea how one

goes about doing that.

Ugh, your story does sound frustrating!! Why people can't just accept

that we maybe have a better idea of what's going on in our bodies and

that we might have at least SOME idea of what we need! And they

should be doing whatever they can to make you better. Freaking

ridiculous, isn't it?

Beth

>

> <<she's the first person

> to actually take my hormonal imbalance theory seriously. I know it

> didn't cause my vulvar pain, but still.>>

>

> Hey,

> What's your theory? And I'd like to hear more about how she

took it seriously. Does that mean they're going to DO something about

it, like test you and something? Or did you mean you just felt like

she was listening and not disregarding you?

>

> I'm so frustrated by that whole things with my doctor's office.

She's agreed to test my progesterone (I'm in the middle of a series

of 3--days 3,5, and 10 after ovulation), but I keep thinking even if

it comes back in the normal ranges, maybe it's just not right for ME.

I really wish there was a way to determine what my levels are of

everything right at ovulation when I'm relatively pain-free and then

mimic those levels the rest of my cycle. I don't even know if they

could do that, much less if they would even try! (Sigh)

>

> Thanks,

> Becky

>

> ---------------------------------

> Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s

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>

September 16, 2007