New treatment ends one woman's pain, but many still question its effectiveness
July 18 - We're lucky to live in age of medical miracles. We've come to expect a remedy for every ailment, but doctors will concede sometimes they' re simply baffled. Many women, maybe hundreds of thousands, are virtual prisoners to pain. They suffer delibitating agony that doesn't fit the usual diagnoses. But now, there's a new procedure that may give them back the life they thought was gone forever. Chief Medical Correspondent Dr. Bob Arnot reports.
"THERE'S NO way if you don't have it yourself that you can actually understand the pain," says Judy Orndorff.
For years, Judy Orndorff had been a busy, athletic person, spending time with her family and with her prized Arabian horses. In fact, riding and showing horses had been her lifelong passion in Virginia, in the shadow of the Shenandoahs.
"I was athletic, very athletic," she says. "Every sport in high school I played. And in college I played basketball for a year, so it was always physical activities."
But for 13 long years, her active life was held hostage by a powerful force-pain. "Talking in percentages, I would say it took over my life about 90 percent," she says.
Hers was chronic pelvic pain - one of the most common, and least understood, health problems for women.
"The pain was like someone had a knife inside me and just poking or jabbing inside my right lower quadrant, you would think you were having appendicitis," says Orndnorff.
After the birth of her son, the constant, often excruciating pain got even worse, which meant that not only could she no longer ride her treasured horse. Even everyday tasks, from pushing a vacuum to driving a car, were suddenly out of reach.
"Put your seat belt on, have it on your pelvis for a long time, and you can' t hardly stand it," she says.
For years, the only running she was able to do, was to see the doctor. "I went twice to the hospital, to the emergency room, thinking I did have appendicitis," she says.
The pain also began to take a toll on her marriage. "Well, intimacy was not - I'm going to cry - it hurt.
Especially afterwards," she admits tearfully. "That's tough, you know? That' s supposed to be one of the best things of a marriage."
In search of a diagnosis - and in hopes of a cure - she saw specialists, had surgeries, even tried chiropractors and changing her diet. Still, like so many other women, she was unable to find relief.
"I was very, very depressed," she says. "[Doctors] couldn't tell me anything. In fact, the only thing they told me was, we don't know."
Many women find themselves bounced like a ping pong ball from specialist to specialist, greeted not with definitive diagnosis, but with an increasing sense of frustration and loneliness.
"We don't know" is a refrain that many women like her ultimately hear. That' s because up to a third of all cases can not be traced to a specific cause such as pelvic inflammatory disease, cysts, or endometriosis, an excessive growth of uterine tissue. Instead, many women find themselves bounced like a ping pong ball from specialist to specialist, greeted not with definitive diagnosis, but with an increasing sense of frustration and loneliness.
"I was told you need to stop thinking about it so much. You know, get it out of your mind, maybe it'll go away," says Orndorff. "You just cannot understand it unless you experience it yourself."
By last year, it seemed her options had finally run out. Her doctor recommended a complete hysterectomy. But even that procedure, in which the reproductive organs are surgically removed, was no guarantee that she would find relief. So before agreeing to major surgery, she tried looking for help in one final place - her computer.
There, on the internet, she found a Web page that seemed to speak directly to her.
"First thing that came up was, "New Non-Surgical Treatment For Pelvic Pain" Johns Hopkins in Maryland. I click on it, and it was me. They were talking about me," she says. "I just read it and I just started bawling. I was bawling, not crying, I was bawling."
The physicians whose work is described on the Web page is Dr. Tony Venbrux. He's an interventional radiologist-a physician who uses x-rays to guide him in performing minimally-invasive surgical procedures.
"Many of the women that I see are really at their wit's end, they have run the gauntlet," he says.
He thinks some women like Orndorff are suffering from a condition called pelvic congestion syndrome, meaning their pain comes from a tangle of swollen varicose veins buried deep within the pelvis.
A varicose vein is a blood vessel in which the valves that normally keep blood flowing in one direction stop working properly and allow blood to flow backwards or pool, stretching out the thin walls of the vein.
"[These veins] have stretch receptors, and when they're engorged and stretched, that's when you get the pain sensation," says Venbrux.
Since varicose veins don't show up on common disgnostic scans, like x-rays and ultrasounds, they may go undetected for years.
To treat them, Dr. Venbrux uses a therapy called ovarian vein embolization - a non-surgical procedure that plugs up, or embolizes, the swollen veins without affecting the overall blood supply in the pelvis.
"The body has this amazing ability to take up the slack and there are other veins that immediately take over," he says. According to Dr. Venbrux, blocking these veins does not affect the normal fuction of the ovaries or uterus.
The American College of Obstetrics and Gynecology is... calling the idea that varicose veins cause pelvic pain "conjectural and difficult to justify."
Still, not every woman suffering pelvic pain has varicose veins, and not every woman with them experiences pain, so doctors at Hopkins are careful to screen women for other problems first.
Only a handful of doctors in the country perform this technique. But even so, Ordnorff says she didn't need any convincing to try it. "I had complete, 100 precent faith that this is what I needed," she says.
Embolization is usually an outpatient procedure and takes about two hours.
Dr. Venbrux started by threading a tiny, hollow catheter into the major vein in the pelvis. Then, after injecting a special dye, he took an x-ray of the area.
Doctors used an image, called a venogram, as a road map. The destination: a group of dark swellings - the varicose veins.
Dr. Venbrux carefully guided the delicate catheter to a point just above the swelling. Then he inserted a number of tiny plugs, fragile coils of fuzzy wire that will block off the vein. To ensure the vein stayed blocked, a foam-like clotting agent was also slurry injected. After the procedure was finished, the dark, varicose veins no longer appeared on a venogram.
This procedure does have risks: the tiny coils can break free, causing serious problems and requiring further surgery to remove them. Also, the treatment is still so new that doctors don't have a lot of data to show how well embolization works in the long run - if at all.
Other doctors question whether varicose veins are really the source of women 's pain - and if not, whether this medical procedure is truly justified.
The American College of Obstetrics and Gynecology is taking a wait-and-see attitude toward the issue, calling the idea that varicose veins cause pelvic pain "conjectural and difficult to justify."
"In the meantime, what do you do with the patient who had chronic pelvic pain?" asks Venbrux. "Do you ignore it just because there isn't data there? I say no."
Overall, fewer than a hundred cases have been treated this way, but Dr. Venbrux says that close to 80 percent of his patients feel less pain now than they did before.
While results usually take weeks to develop, Orndorff says she felt better almost overnight. "The next week, I went to Disney," she says. "I rode everything. I stood in lines for hours. My husband kept coming up to me, 'are you ready to sit down?' That's when I realized - he's never known me otherwise."
But perhaps the single best test of long-term success is horseback riding. After all, what could be more painful than repeated sharp jolts from the saddle?
"I'm on a horse," she says with a laugh. "Like I said, this is the life. I'm back in the saddle again."
http://www.msnbc.com/news/434471.asp