Re: MEMBER WHO LEFT 'thoughts'.

[Guest guest]

It occurred to me that that person needed to be taken by the hand and pointed to

the FILES, LINKS and ARCHIVES features. I think she would have found

information that would have helped her.

She did mention that she felt too intimidated to ask questions so maybe she is

just not very familiar with " online " stuff. It is too bad that she quit without

doing a little more exploring. She mentioned that it would be helpful to have

" links " . I guess she didn't know how to find them.

Ora

>

>

>HI everyone,

>

>I normally 'never' do this but when a member unsubscribes I do ask for an

'exit' letter in order to help make the list better. So I thought I'd send this

in as a response back I'd received (anonymously of course) and only for the

sake of helping others as we sometimes forget how alone and emotional this

disease can be and the great need for support, especially if we've been here a

while and it's old hat to 'us' oldies.

>

>It made me feel so sad that she didn't stay with us a little longer to know how

compassionate and helpful we really can be. I did write her personally and maybe

she'll be back, I hope so. But maybe we can bear this in mind with a new member

and I'm as guilty as anyone, and I realize it's often just a matter of no time

as well. *sigh* but I felt so bad.

>

>Dee~

>=======================================================

>1. How long were you a member of the VD list?

> About 2 weeks

>

> 2. Did you get from the list what you expected to get?

>

> Yes - learned a few things I didn't know before, but mostly no.

>

> 3. Did you contribute to the list (if not, why not?)

>

> Yes, several times

>

> 4. What was the single most important factor in your decision to

> leave the list? (and other factors, if you have the time.)

>

> The main reason is that I was looking for emotional support - BIG TIME. VVS

has been emotional hell for me since being married and was the main reason I

went searching for an online support group. I really needed the commradery of

other women suffering from the same thing I was.

>

> While I found women with VVS, most of all they ever talked about was

unrelated to emotional support. Just chit chat or this new " probiotic " or this

new " yeast cleanse " . The toil VVS takes on relationships and self esteem was

mentioned in one thread briefly and no one ever picked up on it but me and one

other girl and then it was dropped.....

>

> .....Also, I joined this list because I was hoping others would share

treatments their doctors were putting them through or things their doctors had

told them. Most of the time, people talked about " natural " therapies, yeast,

etc. While I realize that threads shift on and off different topics, it seemed

that most members treated thier VVS via homeopathic methods and I am not

interested in that so much. I had no clue what they were talking about and was

too intimidated to ask.

>

>

> 5. Do you have any suggestions for making the list more useful

> to a person like yourself?

>

> There didn't appear to be much room for " newbies " . It would be helpful if

there were a special education section/forum just for people new to the disease

that don't know anything about any treatments or symptoms. Maybe some links? If

there were some I guess I just missed them.

>

[Guest guest]

I agree totally Ora, that is often a problem I see with our new members, either they don't realize how much information is there in the files or archives etc. or have no idea about on line lists or else often just won't take the time like so many of us have to want to know 'all' we can and will read everything till our eyeballs bug out, LOL I know I did. But I did feel bad she didn't get more emotional support and those things aren't in the files so to speak.

Dee~

[Guest guest]

Maybe to the newbies who introduce themselves, point the archives out immediately. I was intimidated at first too and didnt understand natural treatments that the veterans were talking about, but as I saw more women getting better from them I sat online for hours reading everything.I also didnt think yeast was a problem for me since my gyn said it wasnt. Its frusterating for newbies to listen to something other than what their doctors are saying they should do. Maybe put in a file where those who want to read only about chemical drugs can read about different treatments and what they are and then a separate file of natural treatments and what they can do. And maybe every now and then make a post for newbies who just read and havent been brave enough to post yet, and remind them about the files and archives and invite them to post. DTroll wrote:

I agree totally Ora, that is often a problem I see with our new members, either they don't realize how much information is there in the files or archives etc. or have no idea about on line lists or else often just won't take the time like so many of us have to want to know 'all' we can and will read everything till our eyeballs bug out, LOL I know I did. But I did feel bad she didn't get more emotional support and those things aren't in the files so to speak.

Dee~

*****END OF MESSAGE/REMOVE WHEN REPLYING*****http://groups.yahoo.com/group/VulvarDisordersto search our archive or view our files.***

[Guest guest]

But..the welcome letter explains all that and gives links to find

them. I wonder if newbies even read those welcome letters.

I feel this group is supportive. You have to ask for it since there

is no way we can know who needs it or not until they identify

themselves. I myself don't need the support unless I am having a bad

time and then I will come on board...have my pity party and others

always respond with help/advice/concern.

I just don't think this person gave us enough of a chance. The

archives on this group are tremendous!! We have great links and

files to look at. If there are any newbies here now that have not

checked them out yet...here is where to find them:

http://health.groups.yahoo.com/group/VulvarDisorders

look at the left side of the page. You have to log into yahoo groups

with your username and password first but it's worth the look!!

Lynn

>

> I agree totally Ora, that is often a problem I see with our new

members, either they don't realize how much information is there in

the files or archives etc. or have no idea about on line lists or

else often just won't take the time like so many of us have to want

to know 'all' we can and will read everything till our eyeballs bug

out, LOL I know I did. But I did feel bad she didn't get more

emotional support and those things aren't in the files so to speak.

>

> Dee~

[Guest guest]

In a message dated 10/12/04 4:14:31 PM, VulvarDisorders

writes:

<< While I found women with VVS, most of all they ever talked about was

unrelated to emotional support. Just chit chat or this new " probiotic " or this

new " yeast cleanse " . The toil VVS takes on relationships and self esteem was

mentioned in one thread briefly and no one ever picked up on it but me and one

other girl and then it was dropped..... >>

This reminds me of the Stones and Springsteen mailing lists I read. Those

lists quite often get off topic, discussing everything from decorating with

Christmas lights to Australian voting laws. There will always be someone who

complains the list isn't talking about the topic of the list. That person is

always told (and not always nicely) if you want to talk about the list's focus -

then start a discussion. If this woman wanted to see discussions about

treatments other than homeopathic ones and wanted discussion about the emotional

aspects of vv/vvs - then she has to start them. The other eight hundred

subscribers don't have antennas to pick up what she wanted to read about. If I

had esp

- I wouldn't be wasting it trying to figure out what the lurkers want to read

on this list, I'd be figuring out winning lottery numbers. <ggg>

Debbie

Tiger

" (Tiger! Change your .sig! Simple rule: No. Br|_|ce. Ever!) " - Tony, 10/5/04