Why I'm here, or An introduction

[Guest guest]

Hi, since I've been encouraged to introduce myself, I figured I'd

give a sort of short description of me re why I'm here. Forgive me

if this story is a bit rambly, I'm feeling a tad incoherent. This

story is also really really long because there is a lot of stuff

going on below my waist, and it seems that much of it is interrelated.

I don't know how long I've had VVS. My first pelvic exam hurt, but I

was also really really tense about it. There's quite a few things

that are a bit off in my nether regions. At 15 or so I was taken to

the gynecologist for irregular periods. (Eventually this was

diagnosed, undiagnosed, and rediagnosed as Polycystic Ovarian Syndrome.)

I think I was 16 when they put me on Provera. I was on and off it

until March of 2001. I developed a rare sex disorder called

Persistent Sexual Arousal Syndrome when I was freshly 17, which may

or may not have been precipitated by the Provera. That is the only

reason I was ever diagnosed with VVS.

(All four of my regular gynecologists never diagnosed it or even

noticed it. They passed off my complaints of pain and discomfort as

" jitters " . My first three gynecologists were female and I fired all

of them because they acted in such an insensitive manner with regard

to my complaints about how much the exams HURT. I had thus fired all

the female gynecologists in my city that my insurance covered, so I

switched to the male gyno that my mom goes to.)

In any event, because PSAS is so rare, you have to go to basically

one of the only specialists in the world to get officially

diagnosed. Shortly after I turned 20, I went to go see an expert in

Boston. He did a full workup which included the famous cotton-swab

test. Yes, that's how I found out I had VVS. And since 15, I'd been

told I was being a sissy! He didn't tell me much about it except to

say there was a correlation with taking hormones (estrogen and

progesterone specifically, not just any hormones) and getting VVS.

He advised I avoid taking Provera or BC.

(He also told me I had fused labia, which none of my other

gynecologists had ever bothered to tell me. What is it with gynos

and not telling you what's going on down there? How am I supposed to

know what normal looks like when I can barely see my bits as it is?)

So anyway, because sex hormones have possibly precipitated TWO things

I have wrong with my bits, I'm not supposed to be on them. However,

I don't have anything resembling a normal cycle and my current gyno

is freaking out about how I might get cancer if I don't have a

regular cycle. I must admit, one good thing about my current gyno is

that even though he doesn't accept that I have other health issues

that contraindicate going back on hormones, and even though he

doesn't acknowledge that I have VVS, he's a decent guy. At my last

annual pelvic, I was in real pain as opposed to my regular extreme

discomfort. I started out with quiet comments about how it hurt, but

when I got to " OW " , he said that he'd do the pap without the

speculum, and I could reschedule the bimanual for sometime in the

next couple of weeks.

What else? Uhm, there's a strong correlation between patients with

PSAS also having Vulvodynia of some sort.

I'm not sexually active, and I don't intend to be, not just because

of VVS, or the fact that intercourse makes PSAS worse sometimes, but

primarily because I don't have a sex drive and because since it is

not causing me distress I've chosen to identify as asexual.

Wow, this is getting really long. Okay, so the reason I joined is

that even though my VVS is " just " pain-on-penetrative-contact and I'm

not having sex, I still hate the pain I get during my exams and the

way I have to sit funny for a few hours afterwards. I recently

purchased a menstrual cup and I wanted to use it. Earlier in the

week, I tried inserting it and it hurt so much. I was feeling so

frustrated and then I remembered that I got diagnosed with VVS and

figured maybe someone else out there might have suggestions. (By the

way, today was a less painful day and I successfully inserted and

removed the cup. Still hurt, though.)

So, if you made it this far, thanks for reading. Any suggestions re

what I can do about making the menstrual cup insertion and removal

less painful?

Thanks!

Batshua

[Guest guest]

Earlier in the

week, I tried inserting it and it hurt so much. I was feeling so

frustrated and then I remembered that I got diagnosed with VVS and

figured maybe someone else out there might have suggestions. (By the

way, today was a less painful day and I successfully inserted and

removed the cup. Still hurt, though.)

So, if you made it this far, thanks for reading. Any suggestions re

what I can do about making the menstrual cup insertion and removal

less painful?

Batshua,

Considering the pain you're having with inserting ANYTHING into your

vagina, it seems to me that a menstrual cup just might not be the best

thing for you to be using right now. How about the possibility of using

pads with a nice cushy layer of cotton over it to prevent direct contact?

If you're interested in details on the kind of cotton that works well, i'd

be happy to post them.

Welcome to the group. I also have a long history of pelvic pain problems,

so i can really relate to all you've been through.

Hollis