"The condition was so uncomfortable and you never felt clean. It was just awful," the 70-year-old tells PEOPLE

By Ana Calderone
Updated November 10, 2015 09:45 AM
Courtesy HSN

HSN designer Diane Gilman is opening up about her battle with pelvic organ prolapse in hopes of eliminating the stigma associated with the condition.

The creator of DG2 jeans had symptoms of the disorder – which is often caused by natural childbirth or menopause and can lead the cervix, bladder and vagina to drop or fall out of the body – for eight years before undergoing surgery.

“It’s so equal to us being a freak to have this condition, especially at the point I had it, that you don’t talk about it,” Gilman, 70, tells PEOPLE. “You craft your entire life around hiding this.”

Her symptoms became so severe, says Gilman, that she was often stopped by TSA agents in airport security lines and accused of hiding something between her legs.

“The first time it happened, I was getting on a flight to Italy. And I just said to the women, ‘What you’re going to see is going to horrify you,’ ” she says. “By the time we came out of the room, they were in tears. They were weeping for me.”

The disorder – which studies say can affect up to 40 percent of women – caused Gilman to isolate herself. Like most sufferers, she was reluctant to seek help.

“The condition was so uncomfortable and you never felt clean. It was just awful,” she says. “I stopped going out, I had no social life. I came to work, designed, did shows and spent the rest of my time alone, shielding myself from a normal world.”

Once the fashion guru’s condition “got too intense to deal with,” she decided to have corrective surgery by specialist Dr. Alan Garely – and managed to regain control of her life.

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“I feel 20 years younger. I feel really optimistic,” she says. “Now I can lead a super active life, which is who I am.”

And she is also ready to give back. Gilman is hosting a fundraising gala on Dec. 10 to develop a Women’s Center at South Nassau Hospital in Oceanside, N.Y., where she had her surgery. Besides raising money, she hopes to increase awareness about the condition so no one else has to “suffer in silence.”

“I did wait too long but I waited too long out of silence and ignorance. Why should women suffer the indignities from this condition that I suffered?” she says. “I think the more you know, the better off you are. And if no one’s going to discuss it but me, then I’m going to discuss it.”