intro (long)

[Guest guest]

This is the reply that I got from the member who I denied membership, if

anyone is interested:

> Hi Poly (sorry if you are receiving this twice -- I

> tried to send it but Yahoo had a hiccup),

>

> Thanks for responding and explaining the decision to

> reject my membership request.

>

> I do understand. As is true of some of the other

> groups I have recently become a part of (infertility

> and endometriosis groups, for example), there are lots

> of personal things being shared, and I certainly

> understand the desire for privacy. Over the internet,

> who knows who people " really " are out there. I don't

> take offense to the group wanting to remain private

> and their careful screening of potential members.

>

> As for the infertility and endo groups, these are two

> groups that I truly " belong " to, as I am personally

> dealing with these issues. However, I also joined an

> egroup on DES exposure, which is something I may or

> may not be affected by (no physical symptoms, but it

> is likely that my mother took the drug during her

> pregnancy with me or any of my six older siblings...

> so, I probably WAS exposed but do not have some of the

> more obvious symptoms... I " might " have a related

> autoimmune thing going on, but that's hard to say as

> my tests are only borderline positive and I can't

> really know if it's related). Anyway, the DES group

> was a really great source of information for me.

> While I could (and did) learn a lot from related

> websites, the discussions on the board were very

> enlightening and provided far more insight than

> anything else I read about elsewhere. I feel that

> with things like this, sometimes the best way to learn

> the nitty gritty is straight from the people who are

> dealing with it daily (I guess that might sound a bit

> exploitive, which is not my intent when reading and

> interacting with boards like this). And through the

> DES group, I learned about certain drugs and

> procedures that I didn't know existed -- things that

> might be relevant to me. The best part was that I was

> able to recognize some of the signs in a woman I know

> who has unsuccessfully been trying to get pregnant for

> quite some time and has recently been told she has a

> T-shaped uterus and " two endometriums " (said the

> ultrasound technician). I was able to tell her what I

> learned and I directed her to the very supportive

> egroup of women who shared in her problem. I was able

> to give her hope because I saw reasons to be hopeful

> in the conversations among the DES women. I'm

> thrilled that this woman is now learning everything

> she can about DES exposure so that she can plan

> accordingly (i.e. get a new OB/GYN, insist on more

> comprehensive four-quadrant pap smears, make sure her

> cervix is carefully monitored in the event that she

> does become pregnant, etc).

>

> The other thing is that I feel like I understand so

> much more about the personal aspects of the disorder

> than I ever would have if I didn't join the DES

> egroup. It opened a world to me that I didn't

> otherwise know about, and it gave me a strong

> appreciation for what these women are going through.

> Also, it made me question certain things about our

> medical " authorities " . It was a good wake up call for

> me to make sure I question things and research things,

> even if my trusted doctors recommend them. This has

> extended to an upcoming dilema of mine -- whether or

> not to take Lupron as part of my next fertility drug

> protocol. Today I did a Medline search and ordered a

> couple journal articles. I also printed out the PDR

> pages on this drug and started asking and digging for

> more information. Not long ago I might have blindly

> agreed to take it without learning more first, just

> because my doctor said it ok.

>

> I'm just telling you all of this so that maybe you

> will understand why I was interested in joining the

> Ashermans group. I wanted to learn and to understand.

> The few stories on the website tugged at my

> heartstrings, but more than that, they made me want to

> learn more, directly from the people afflicted.

>

> But again, I DO understand the group's desire for

> privacy. At least for now, I know the group is there

> and if someone I know finds herself dealing with

> Ashermans in the future (hopefully not me, but you

> never know), I will direct them to the website and to

> the group.

>

> Thanks again for your response. I wish everyone the

> best.

>

> Kindest Regards,

> Lori