Women vs. Big Pharma in the Battle Over Trans-vaginal Mesh

That changed in 2009. Her mom had undergone surgery to repair her pelvic organs. Immediately after, something was wrong. It took the doctors years, Horton says, to admit the same.

She remembers watching her mother sob outside of the doctor's office in 2011, terror in her eyes. "They had to give her IV morphine just to give her a mental break from the pain," she says. Trying to understand what was happening, Horton slowly threw herself into a new passion: learning everything she could about mesh.

She discovered a news site called the Mesh Medical Device News Desk and contributed an emotional story about watching her mother suffer, though careful to protect her mom's identity. The response surprised her: The story generated a flood of calls and emails and 61 thoughtful public comments.

Joleen Chambers

Aaron Horton, left, showed up almost every day to watch the Dallas trial of Linda Batiste, right.

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Email the author at amy.silverstein@dallasobserver.com.

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Feeling a new purpose, Horton got to work on her new cause: The Mesh Warrior, a blog that features personal stories about confronting doctors, research news and polls trying to figure out how to organize a local support group.

Horton now spends much of her time on the phone with women too ashamed to talk to anyone else. Their stories follow a disturbing pattern: doctors who won't listen, sometimes family members who won't either. "I can tell you 10 women I can probably think of right now who started off this surgery with three kids, beautiful house," Horton says. Now, "their husband has left them, they've lost their house, they've lost their job because they can't work and now they're on disability and living in isolation in Section 8 housing."

Sandy (not her real name) is one of them. She returned to her gynecologist initially and got no answers, she says. "She did a pelvic on me, and said everything was fine and her work was — I'll never forget this word — 'pristine,'" she says. But there was a strange tailbone and leg pain in Sandy's body that got worse over time. It spread to her back and hips.

Sandy got more surgeries to fix those problems. They didn't work. Finally, she says, a doctor determined it was the mesh causing the pain. Sandy went to UT Southwestern, she says, but the doctors told her the surgery was too risky. She wasn't convinced, so she found another doctor who was willing to take the mesh out. Now the mesh is gone, but it's not clear that she's better off. The surgery left her severely incontinent, with a fistula and pain so intense she can't sit without popping pain pills. Her husband divorced her. "He didn't want to be with a wife who could not have sex with him," she says, crying into the phone.

She lives alone, too ashamed to ask her adult children if she can move in. She's living on her retirement checks but expects to run out of money and isn't sure what will happen next.

Dr. Daniel Elliott, a surgeon at the Mayo Clinic, specializes in removing mesh. He says patients complain "all the time" about doctors who've ignored their pain. "I have a feeling, unfortunately, there are certain individuals who have put this in, they're not high volume [surgeons], they don't have advanced training and then they have a complication and they don't know how to deal with it," he says.

Horton blogs from a friend's barn house in East Texas, where she and her husband spend many weekends. Aside from occasional rifle shots in the background, the land is peaceful, home to a small farm business and trees. She writes from the balcony. For meals, she and her husband visit a local organic restaurant and chat with the owner, a former gynecologist who tried implanting mesh once and didn't like it. "To me, it looks kind of like, what's that material? A body scrubber thing," he said one recent afternoon.

When she's not writing, she's drumming up support, teaming up with Joleen Chambers, another Dallas-based patient advocate, and Hal Samples, a Dallas photographer who suffered complications when he got mesh for a hernia surgery. To show his gratitude, he gave Horton a free photo shoot. She asked to be made up in blue makeup, like a feminine warrior. Before the shoot was over, she bought some textiles from Home Depot and tore them up, giving the material the appearance of mesh. She stuck it over her lips for the final picture — the photo she uses on her Mesh Warrior site. "I said, 'I've got to have this picture because this is how these women feel,'" she says. "They feel silenced."

She's trying to get a formal foundation going too, and has had meetings so far with Consumer Reports and the UCLA marketing department. But mostly she's a welcoming ear to patients with no one else to turn to. A welcome ear and a comfortable couch in Lakewood, where she's let more than one plaintiff crash when they've come to Dallas to watch the mesh battles play out in court.

One day in 1998, a young pharmaceutical rep showed up at Dr. Tom Margolis' office, pitching him on a new device. The rep wanted Margolis' business, badly. "I said, 'Nope, no way,'" Margolis recalls. "I told him that they were going to have all sorts of problems."