Alliance Newspaper

by Laura McKellar - August 2001

I had only been on the hysterectomy web site for a few minutes when I wondered whether or not I had entered a Brahms fairytale.

Had all of my searching for information led to this - an interactive web site (www.hystersisters.com) on which Ladies in Waiting and Punctured Princesses all learn to live happily ever after in the Land of Hyster?

"How silly," I thought, moving on. "I'm looking for information, not bedtime stories."

I sifted through dozens of medical web sites, online mailing lists and message boards. And the more I read, the more confused I became.

In addition to finding conflicting information, I also found a lot of "pro" and "con" sites, all trying to tell me what to do and how to do it - without knowing anything about me.

My mind kept returning to hystersisters.com, remembering a cute little story that I had read there. (See box, page one.)

In that story (which pretty much describes the site's goal), the Hyster Sisters didn't bombard their visitor with brochures or try to entice her to become one of them - they merely answered her questions and offered support in whatever way they could.

I decided to give the site another chance. And what I found this time was anything BUT silly.

I found an online community of women who had had hysterectomies ("Punctured Princesses") who simply sought to soothe the anxieties of those considering or planning to have the surgery ("Ladies in Waiting").

By keeping the site light and creative, Hystersisters offers information, bolsters confidence, answers questions and sparks close friendships - all in a more interesting and less frightening way.

Hystersisters was the brainchild of Kathy Kelley, a 44-year-old school teacher, who herself underwent a hysterectomy in 1998.

"I found that no matter what resources I had, I needed more," said Kelley, from her home in Denton, Texas.

"Being an Internet junkie, I went online to find some helpful hints for my recovery process. I wanted more than medical brochures. I wanted reassurances that the funny aches and pains and the odd smells were normal."

As she researched, she recorded. Eventually, she had enough information to create a small FAQ site.

"I had only intended it to be a place where women could find information," Kelley said, "but I realized they were using the guest book to ask questions and support each other, so I put up a small message board."

Within a week, the message board crashed, so she had to find a larger system - one that could handle a lot of traffic.

At that point, Kelley said, she realized the "power and importance of women helping women" and she left the free AOL site to launch hystersisters.com.

"It was small - only 100 women or so - but we developed relationships. We shared. We cared. And we grew."

Women found the website and began to post questions and answers. They posted stories about their own recoveries - the long ones, the short ones, the easy ones, the hard ones.

They offered resources for and information on pre- and post-op issues; hormonal problems; grief; cancer concerns; and more. They offered virtual raspberry tea and brownies for comfort.

The website continued to grow and become a safe haven for women to support and ask questions of each other.

Today, there are more than 13,500 registered members, 40 hostesses, 23,000 various threads and approximately 140,000 posts on the site, which is supported solely by the sale of merchandise and voluntary donations.

"It's incredible," Kelley said. "I'm almost awed by it. There's a lot of joy and reward in offering help to someone who needs a hand. Especially for women - given the fact we're such nurturers.

"Our culture has gotten away from this type of thing. We're always moving. There's not always someone around to just talk with. The Internet has given us the technology to be able to reach across all boundaries and borders and extend a helping hand."

Hystersisters offers a variety of ways to obtain information and support, such as active message boards, archived FAQ, a chat room, a map to link women with others in their area, and more.

The message boards have many forums from which to choose, including: "Alternative Choices," "Pre-Op," "Post-Op," "Hormone Jungle," "Cancer Concerns," "Road Less Traveled" (for long-term complication issues), "Chatter-Friends Without Faces," "Book Club" and more.

And on each page, there is a statement that makes it clear hystersisters.com is not intended to take the place of a woman's personal relationship with her physician, but rather is an online support system for women by women.

"We have women who are waitresses and women who are district attorneys," she said. "The one thing I've learned from this most of all is that women are more alike than we are different."

As I traveled through the Land of Hyster, I realized Kelley was indeed right. I met women from all walks of life, from all over the world. Women who had similar health concerns and women whose diagnoses turned out to be far more frightening than my own.

The one thing that connected us was our fear, and our need for understanding, support and information.

As I talked with the Ladies in Waiting, the Punctured Princesses, and those on the Road Less Traveled, I became more and more secure in my decision to have the surgery.

I read everything I could on my diagnosis of rapidly growing uterine fibroids (non-cancerous growths present in about 30 percent of women over the age of 30) - including all of the treatment alternatives to hysterectomy.

Eventually, I came to the decision that hysterectomy was the right way to go - for me. No one pushed me toward any decision - they just helped me find the information and support I needed to make the right decision for myself.


"When women come to Hystersisters, we are not in the mode of cheerleading everyone into having a hysterectomy," Kelley said.

"We don't say that this is the best thing for you - but we're also not on the other end of the spectrum saying don't have one under any circumstance."

According to Kelley, there are two extreme schools of thought concerning hysterectomy. There are those who believe, "If you're done with the parts and they're causing you trouble, take them out." And then there are those who say, "This is rape; this is snorflation."

"We don't ever want to be represented as 'pro' or 'con' hysterectomy - we're 'pro-women.' "

"There should be a balance," Kelley said. "If you've tried everything else, and you're suffering and your life is suffering, then you need one and there is nothing to be ashamed about.

"We are all women - whole women - with or without our wombs."

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The Alliance newspaper covers health and human services in the northern part of Massachusetts. They have about 25,000 readers.