23 July 2008

Impasse

PCOS. I've talked about it before. It usually stands for Polycystic Ovarian Syndrome. I have it and many other women all over the world have it. But for this post, let's assume those letters actually stand for:

Please
Cry
Out your
Story


I have a private family Web site. It's a place where I (attempt) to regularly post pictures of the kids, Ty-man, and myself for friends and family who are out-of-state. It's also a place where I've posted my PCOS story. This story has been on-line since 2004 because I got tired of answering the same, uncomfortable questions over and over and I also wanted my page to be a resource for other women who were searching for answers.

The first time I ever received an e-mail from a woman who found my PCOS page, it took my breath away. I mean, I created that page for other women to find, but I didn't really think anyone would truly find it. And she did. They all did. At first, the e-mails I received were full of thanks and the sharing of stories. These fellow PCOS sufferers were glad to know someone else was out there, someone who understood and was trying to educate. We would exchange a few e-mails, commiserate over the difficulty of the disorder, and move on.

But lately, the tone of the e-mails have changed. I'm getting e-mails from very young women. Women in their teens. Women, girls really, who are devastated by this syndrome. Who want medical advice from me. Who want me to tell them that, yes, they'll someday have children of their own.

Wow.

At 16 and 18 (the ages of many of these girls) I couldn't even conceive of conceiving. It was the furthest thing from my mind. Even if I had known at 18 that I had PCOS and that conception of future Heather-spawn was going to be difficult, I would not have worried about it. Scarlet O'Hara and I have something in common - we worry about things tomorrow. It just wrenches my heart that these girls expect answers from me when I didn't have the answers for myself while in the midst of PCOS treatment and fertility madness.

There have been several times over the last few weeks, after receiving these e-mails, that I've thought about taking down my PCOS page, or removing my e-mail address from it. Something. Because the contact is heart-wrenching and I no longer know how to respond.

10 comments:

Donna said...

I always knew you were awesome!
I'm sure those women are very grateful for your time although, that is alot of responsibility that, I'm sure, you don't take lightly.

RiverPoet said...

You know, in the last 24 hours I've done a lot of thinking about why I share my Chiari story and other medical issues on my blog. But...it's part of who I am. PCOS is part of who you are. I know that you're feeling the burden of being the go-to girl right now, but (allow me to say it) God has a reason for that. You give these girls hope, something they may be in short supply of. You're a lighthouse on the coast.

Remind them that every case is different and that you can't give anyone guarantees, that you have shared your story so that others may find hope.

I know that whatever you do, it will be the right thing. Peace - D

Employee No. 3699 said...

Is there a PCOS medical site you can link to for them to reference?

And hey, you are amazing!

missnightowl said...

Do you belong to a support group, online or otherwise? Do you have an FAQ on your page?

I have belonged to 2 support groups for Endometriosis. Although I didn't have my own website, my story and contact info was listed with the first group and I have received those emails.

I have had PCOS since age 16 or before, although it wasn't confirmed until I had my first surgery for endo at 18. I was told by my doctor at age 18 that if I ever wanted to have a chance to get pregnant, I'd better do it then. Who tells an 18 year old to get pregnant?

Before my surgery, even with all the problems I had, I never thought I would have trouble conceiving in the future. The only resource I had was my doctor - there was nothing at any of the area libraries, I knew no one else who had it, or who had even heard of either PCOS or endometriosis, and this was before the internet.

If it's too difficult for you right now, maybe take your email address off temporarily. I learned to use talking about it as a kind of therapy, but that's not for everyone. Even if it is, after awhile it can be very emotionally draining so maybe you just need a break. Take some space and see how you feel about it - it's YOUR story and your life.

Miss Britt said...

Hey, if you're looking for resources to send people to - contact AmyD at amysmusings.com She can give you a TON of links.

Turnbaby said...

I too think referring to links and support groups would be helpful sugar.

I've never been 'diagnosed' with POCS however I have some symptoms and have had two cysts burst (NO FUN).

That Chick Over There said...

Hmm.

You are awesome, and I think that's probably why they are asking.

I was thinking about having a baby then, because I knew it would be my only chance. I did have a baby (well, 2 actually) at 22 because I knew it was either have a baby then or never. I mean, it didn't work out so great because the husband I had at the time didn't love me and shit, but still. Wouldn't trade the kids for anything.

Molly's Mom said...

Put up some links where people can find more medical info on PCOS instead. If it's that hard to respond to people, don't put yourself through it.

It is kind of scary in a way that these teenagers are worrying about having a family so darn early. Then again, I guess if you know early you can anticipate more effort in the future rather than being utterly disappointed later on. I don't know what I would want.

I'm glad you were able to have such cuties after dealing with PCOS yourself...

Coal Miner's Granddaughter said...

Donna - Thanks, hon.

RiverPoet - It is who I am. Definitely. Thanks for the advice, hon.

Employee no. 3699 - There are several that I do link to. Thanks!

Miss Night Owl - I do point them in the direction of a PCOS support message board and site. You're right, it is difficult when you can't find the information you need and you think you're the only person suffering with this syndrome. I am thinking about removing my e-mail. That way, the story stays.

Miss Britt - Thanks, hon!

Turnbaby - I do link to a couple that helped me. And two burst cysts? Yeouch!

Chick - Thanks, hon. :)

Molly's Mom - It is scary that they're thinking about having kids at 18. But when I got married at 23, knowing then what I know now, I probably would have begun trying immediately instead of waiting 6 years, even though I felt too immature to be a mother.

Cricky (Who Is More Than Just A Girl) said...

I found this blog in relation to post on PCOS. You're encouragement and sharing makes me hopeful for my own success story.

I agree with the linking idea, there are thousands of sites with advice and info.