Story URL: http://news.medill.northwestern.edu/chicago/news.aspx?id=214283
Story Retrieval Date: 10/1/2014 1:17:49 PM CST
The HysterSisters Woman-to-Woman Support App for hysterectomy support.
Hysterectomy support in the palm of your hand
A popular hysterectomy support website continues to guide women through the hysterectomy experience with the launch of their new mobile app in iTunes and Google Play.
HysterSisters.com’s free mobile app, HysterSisters Woman-to-Woman Hysterectomy Support, allows women to enter their surgery dates to receive personalized and timely information guiding them through the partial or total removal of their reproductive organs.
Approximately 600,000 hysterectomies are performed annually in the United States. An estimated 20 million U.S. women have had a hysterectomy, according to the Centers for Disease Control and Prevention.
“Women of course are always the best at helping other women when they are going through hard times,” said Kathy Kelley, the founder and chief CEO of Hyster Sisters Inc., located in Denton, Texas.
Kelley, a former teacher, created the website in 1998 after undergoing her own hysterectomy at the age of 41. The site’s domain name, www.HysterSisters.com, was born in 1999 and now has approximately 290,000 registered members.
Kelley said that, over the course of five years, the site traffic originating from mobile phones increased from about 5 percent to almost 50 percent.
“I was concerned because I felt like my visitors, my members were not getting everything that they could get if they were on a big browser,” Kelley said. “So I started looking at my website in a whole new way.”
“I decided that I was going to make the leap, and I was going to jump into an app, so they have the website, but they also have some extra new tools,” she said.
Amy Brown of Orland Park, a southwest Chicago suburb, came across the HysterSisters Support app while researching information for her own hysterectomy.
“I love that it is on an app,” said the 45-year-old clinical psychologist. “It’s easy to get into too.”
Brown was able to sign in with an anonymous user name and correspond with others, particularly those who were having surgery at the same time she was. Brown chose a user name based on one of her favorite places in the world. She said that fact alone gave her peace of mind. The anonymity allowed Brown to be viewed as just another woman and not a medical professional.
“I didn’t let anybody know what I did for a living. I wanted to be a normal person in there,” Brown said.
One benefit is that women only have to register once to gain access to both the site and the app. Women are able to discuss their symptoms without anyone knowing their personal information.
“There is an equal playing field in this anonymous community,” Kelley said.
Both the site and app offer access to articles, videos and forums that address the physical and emotional responses women may face throughout the surgical process. Kelley said that one surprising emotional response that women don’t think about ahead of time is the grief they feel after the loss of their womb. Even women who are done having children may struggle with feeling like “less of a woman.”
Kelley said they know when women start feeling dismayed by their loss, and they address this on the app.
“HysterSisters goes back a long way,” said Dr. Lauren Streicher. “It is a wonderful source for women who have no one to talk to.”
Streicher is the author of “The Essential Guide to Hysterectomy” and an assistant clinical professor of obstetrics and gynecology at Northwestern University's Feinberg School of Medicine.
Streicher said the difference between her book and the HysterSisters website is that the site allows women to interact with one another, which creates a sense of community. The only caution that Streicher noted about the site is that sometimes women may post inaccurate medical information. But she said this is true of any open website.
“I got to give them credit,” Streicher said. "They were the first ones out there”
Her second edition of “The Essential Guide to Hysterectomy” is now available on Kindle, with the hard cover to be released in a couple of weeks. Streicher has quoted Kelley on the back cover.
“Overall I think it is a good thing,” Streicher said. “I think the woman who runs it is very responsible and takes this very seriously. I think she tries very hard to give good advice and be there for women.”
Kelley said she frequently speaks at surgeons’ conferences, and she encourages women to go back to their doctors and ask questions. She is also aware that doctors are busy and their goal is to make women’s bodies healthy.
“I think that I got a lot of peace of mind because people were having similar symptoms that I was, I didn’t have to bother my doctor as much,” Brown said. I think health care is motivated to move you in and out pretty quickly. I was able to see that most people didn’t recover as quickly as my doctor’s office originally told me, so that was nice to know that I wasn’t alone.”
Kelley said that many women who have used the site to navigate their own hysterectomies benefit from helping other women through the process.
It has been three months since her surgery and Brown has recommended the app to her surgeon and her own patients.
“It is good for people to know that even doctors or professionals are utilizing it,” Brown said. “It is a wonderful tool.”
Kelley wants women like Brown to gain access through the app and the HysterSisters website and understand that a community surrounds them.
“It is this long string of women on this path that are helping each other along the way, holding hands as they are going,” Kelley said. “They are not alone.”