Lora Elsom was a healthy 21-year-old woman when she went to see a doctor about birth control. The willowy blonde had recently moved in with her boyfriend. Elsom had never used any kind of chemical contraceptive, and worried about using the pill because her mother once had a bad reaction.
Like many women, Elsom saw barrier methods such as condoms and diaphragms as an ineffective choice. Despite all the promotion of condoms, men remain notoriously reluctant to use them. They commonly complain that it reduces their enjoyment. Her boyfriend was about to learn what could really reduce his enjoyment.
Elsom's doctor recommended Depo-Provera, a long-lasting birth control injection. "She says, 'This thing came out. It's great for young people. It lasts three months,'" Elsom recalled.
Elsom was told about a few potential side effects, such as the average five-pound weight gain and the possibility of irregular menstrual bleeding, but they didn't sound bad. "You feel like there's the authority figure. There's a doctor, and on top of that she's a woman," Elsom said. "So what they say is really, really valid."
She got her shot a few minutes later.
It worked -- but not in the way she imagined. For the next year, Elsom couldn't stand to have her boyfriend touch her. It took more than two years before she could actually enjoy sex again.
Turning Off Libido
Elsom is one of thousands of women who complain that Depo-Provera turned off their libido. Just how many women are affected by loss of libido is unclear. Pharmacia, the drug company that markets Depo-Provera, says that between one percent and five percent (1 in 20) of the users experience "decreased sexual desire," as they benignly describe the side effect. But an Australian study said that one of the most common side effects of the drug was "dispareunia" (meaning painful sex) or loss of libido, which affected eight percent (1 in 12) of the women.
Dr. Andrew Kaunitz, a professor and assistant chairman of the Department of Obstetrics and Gynecology at the University of Florida in Jacksonville, believes far fewer than five percent experience declines in libido. Kaunitz has worked with the drug for more than 20 years and testified on behalf of the manufacturer during hearings before the FDA in the early 1990s. He says more than a million women in the U.S. use Depo-Provera and the vast majority are satisfied.
"There is a subgroup of women who may experience a loss of libido," Dr. Kaunitz says. "But clinical trials that we've done have not suggested this is a common concern."
However, one Internet survey conducted by a woman in Great Britain suggests that loss of sexual desire is common among women who have complaints. Teresa Campbell solicited responses from more than 3,000 users of Depo-Provera and copyrighted the results. Campbell complains about serious side effects from Depo-Provera herself, so those attracted to her survey undoubtedly tend to have worries about the drug.
The number one complaint was weight gain (68%), but the number two complaint was loss of libido. Nearly six out of ten women (58%) complained of it. The number three and four complaints were aggression (56%) and depression (54%). Among those new to the drug (less than three months), complaints of depression, aggression and loss of libido were even higher than complaints of weight gain.
The Hormone Doctor
Dr. John Lee, a medical doctor and author of two best-selling books on female hormones, believes that Depo-Provera has adverse affects on the sexuality of nearly every woman.
"It's given to sex offenders as a chemical castration to kill their sex appetite," Lee said. He sees that as a hint about what it does to women. "Depo-Provera is the worst possible way to provide birth control. It's a long-term continuous release form of Provera. It lasts three months. There's a terrible incidence of side effects and it should not be used."
Dr. Lee, author of What Your Doctor May Not Tell You About Menopause, was a physician in general practice in the mid-1970s when he became interested in the effect on women of the hormone progesterone. Progesterone is one of three hormones controlling sexuality, the others being estrogen and testosterone.
Lee pointed out that Depo-Provera is synthetic progesterone. "Provera is a terrible thing," Lee said. He complained that the drug companies take natural progesterone, change the molecule so that it can be patented, and then sell the synthetic as if it were as good as the real thing. Lee believes the change in the molecule is what leads to the drug's side effects.
Dr. David Zava, a biochemist with ZRT Laboratory in Portland, Oregon, who specializes in hormonal research, agrees with Lee. He describes progesterone as a "master key" that unlocks about ten different bodily functions. "Depo-Provera has a limited function and only opens about two of them," Zava says.
Zava says the synthetic progesterone does some things well, such as shut down the ovaries, which creates one set of side effects, and it does other things very poorly. He says Depo-Provera does not provide natural progesterone's calming effect in the brain nor its stabilizing effect on the cardiovascular system. "Women feel rotten on it," Zava says.
"Get a Physician's Desk Reference and look up Provera," Lee says. "You'll see there's about six columns of side effects. And it really doesn't have any benefits."
When Weight Gain Is the Least of Your Worries
Ann FitzSimons Unger of Pharmacia disagrees. "I actually use Depo for the treatment of endometriosis, a uterine condition that can be so painful it makes intercourse impossible or just plain dreaded. I'm happy to say that Depo has actually helped my sex life with my husband since it's all but eliminated the pain, and I don't dread having sex anymore -- dread and pain certainly are libido killers!" she wrote in an email.
However, Pharmacia acknowledges a number of potential side effects, the most prominent of which is weight gain. The company says women who remain on Depo for one year gain an average of five pounds. They gain eight pounds in two years. Six years adds 16 pounds.
Dr. Jerilynn Prior, a professor of medicine at the University of British Columbia in Vancouver, said that doses of progesterone actually raise core temperatures of the body and increase the number of calories a person can eat by about 300 per day. But high-dose Depo-Provera may cause a reverse effect by shutting down the ovaries, where estrogen and testosterone are produced.
At Yale University, Dr. Mary Jane Minkin says evidence that Depo-Provera actually causes the weight gain is weak, even if the drug is associated with extra poundage. As a clinical professor of obstetrics and gynecology, she treats many women with Depo-Provera. People gain weight normally. Changes in estrogen and progesterone levels do affect fluid retention during normal menstrual cycles, but not fat or muscle gains, she said.
However, Lee and Zava believe Depo-Provera creates a hormonal imbalance in the body so estrogen becomes the dominant hormone. Subsequent weight gain is not the woman's fault, Lee maintains.
As you can see, the doctors do not agree on the mechanisms and effects of synthetic progesterone, even though they are all published experts in the field. Dr. Minkin, who was referred by Pharmacia, says that only 10 percent of her patients experience any side effects from the drug. "Most of my ladies tolerate it quite well," she said.
Dr. Prior shares Minkin's belief that Depo-Provera may be unjustly blamed for side effects it does not cause. However, Prior, Lee and Zava believe that women would be best served if they avoided the use of hormonal contraceptives, especially during their teens and early 20s.
Depo-Provera is also known to cause irregularities in menstrual bleeding for most women. Repeated injections of the drug often stop women from having periods at all. According to Pharmacia's literature, the drug has also been associated with complaints of headaches, breast swelling and tenderness, decreased sexual desire, depression, bloating, swelling of the hands and feet, nervousness, abdominal cramps, dizziness, weakness of fatigue, leg cramps, nausea, vaginal discharge or irritation, backache, insomnia, acne, pelvic pain, lack of hair growth or excessive hair loss, rashes, hot flashes and joint pain.
The drug company says a few women also complained of convulsions, jaundice, urinary tract infections, allergic reactions, fainting, paralysis, osteoporosis, lack of return to fertility, deep vein thrombosis, pulmonary embolus, breast cancer or cervical cancer.
The list is reminiscent of an essay from the book Pure Drivel by humorist Steve Martin. The essay, called "Side Effects," is a four-page list of possible reactions to a pain pill, including: "Women often feel a loss of libido, including a two-octave lowering of the voice, an increase in ankle hair and perhaps the lowering of a testicle. If this happens, women should write a detailed description of their last three sexual encounters and mail it to me, Bob, trailer six, Fancyland Trailer Park, Encino, CA."
As in Martin's essay, the list of possible side effects for Depo-Provera seems almost ludicrous. This is a drug given to millions of women. Men rip off the condom because sex won't feel as good for the next twelve minutes or so. But millions of women take a drug that may make them feel horrible all the time.
And while we laugh at the suggestion of reporting these side effects to Bob in Fancyland Trailer Park, the sad truth is that women may be reluctant to report these side effects to anyone. And if they do, the women say, they're often told that they're to blame, not the drug.
Depo-Provera and Murder
Some women blame Depo-Provera for sending them to the deepest depths of depression and even psychosis. Constance Lynn Baugh was jailed last February in St. Clair County, Illinois, on a charge of murdering her newborn baby. She's now awaiting trial.
Baugh's mother, Nancy Hedrick, believes Depo-Provera played a significant role in what happened. Baugh had a child at age 17 and immediately went on Depo-Provera to prevent another pregnancy. The drug is known to be more than 99 percent effective at preventing pregnancy, but it's not perfect. Medical records show that even though Baugh maintained her shots every three months for the next two years, she got pregnant again in the summer of 2000.
However, Hedrick says that Baugh continued to deny being pregnant, even to her mother, even though they lived together.
"I walked in on her one time and saw she couldn't get her jeans up. One side effect of Depo is she gains weight. She said she felt fat and ugly," Hedrick said. "I said, 'Constance, are you pregnant?' And she said, 'No. I'm not pregnant." It was like her body and mind went in different directions." Baugh gained only ten pounds. She had no prenatal care.
Of course, Baugh did not have the number one sign of pregnancy, a cessation of normal menstrual periods. Her periods had been erratic since she went on Depo-Provera. She generally had no periods, but in July of 2000, a month before she was told she was pregnant, she had significant bleeding, so significant that a cop from the carnival had to give her a ride home.
In late January of 2001, Baugh complained to Hedrick that she'd started a period and was bleeding heavily. Hedrick gave her some pads and Motrin. Baugh went to bed. Hedrick let Baugh's two-year-old daughter, Angel, sleep in her bedroom.
"The next morning, I found Constance on her knees in a fetal position," Hedrick said. "She said she was fine and I helped her to bed."
But Baugh was bleeding badly. Hedrick's husband called 911. Hedrick cleared Angel's toys from the floor of Baugh's room, tossing them in the closet so the ambulance crew could get in and take care of Baugh.
At the hospital, while Baugh was taken to intensive care to be treated for internal hemorrhaging, officials called Hedrick into a private room. "I thought they were calling me into the room to tell me my daughter had died. They said she'd given birth to a baby and where was the baby? I said they were liars."
By the time Hedrick got back to her home, police had already found the body of Baugh's newborn child wrapped in a blanket in the closet. The child lay among the toys Hedrick had tossed there.
"They're saying she had the baby in the bedroom," Hedrick said, based on what she heard at the baby's death inquest. "They're saying the baby felt cold, so Constance wrapped up the baby in a blanket and then passed out. For that they're saying she suffocated the baby."
Hedrick believes Baugh was depressed and perhaps even psychotic when she gave birth. She blames the Depo-Provera. "From what I've read, any woman with a mental illness history in the family should not be on Depo," Hedrick said.
Hedrick says Baugh has a history of depression in her family. She said Hedrick became so depressed while she was on Depo-Provera that she tried to overdose on Tylenol. Hedrick says Baugh told doctors she was depressed.
"I've got pictures. I've got video tape," Hedrick says, "but there are times I can't even watch them they make me feel so emotional. To see her how she was before she got on that Depo is heartbreaking."
A Long Fight
Cindy Pearson, executive director of the National Women's Health Network, worked against Food and Drug Administration approval of Depo-Provera in the mid-1990s and continues to be concerned about potentially adverse effects on women.
She points out that hormonal contraceptives have side effects that can vary tremendously from woman to woman.
"For every woman who has a problem there are many women who have nothing like that and can be happy on the same product," Pearson said. "The problem with Depo is that once you're on it there's no way out except waiting it out." And the wait may be longer than three months.
"People who love the drug are not lying when they say it has minor side effects but they're only telling part of the story. We've tried to bring the other part of the story to women's awareness, so they know they face a range of side effects and not just the rosy picture in the brochure," she said.
Depo-Provera has what Pearson calls a "quirky history" of approval. The FDA rejected it in the 1970s because tests on beagles and monkeys showed increased rates of cancer. In addition, no long-term study on women had been done.
But in the 1990s, the World Health Organization financed long-term studies in women that showed no clear risk of cancer. There was a hint, Pearson says, but only a hint, that it may be related to an increased risk of breast cancer in young women.
In addition, the FDA changed its rules to accept testing with rats and mice instead of dogs and monkeys. Depo-Provera passed the rat and mice tests.
The side effects of Depo-Provera drew little notice, said Pearson. "Why below the radar?" she asked rhetorically. "People who are trying to provide contraceptives to women and men who want to postpone children think on the bottom line about postponing pregnancy, and they don't think what's it like living with it."
That angers her. "What gets me mad is mention the word 'condoms' and every man has something to say about what an inconvenient thing it is to use condoms. But here we've got a method that can really be a drag for women all day long. If they rated men's and women's experience of birth control we'd be describing Depo with the same disagreement as men's condoms."
Damage to Relationships
As many people testify, Depo-Provera can end up being as big a drag for men as for women, especially if the side effects damage the relationship. Pearson believes the evidence supports blaming the drug.
"Acne. That's a slam-dunk. It's in all the literature for birth control clinicians," Pearson said. "Lack of lubrication is absolutely hormonally related." In addition, weight gain and irregular menstrual bleeding, which are strongly linked to Depo-Provera, are also know to be sexual turnoffs for some people. Then there are the hormones.
"There's not an absolute link that if you turn off women's hormones you turn off women's interest in sex, but it is not unrelated," she said. "Depo-Provera turns off the ovaries with large does of progestin [synthetic progesterone]. Theoretically, it makes sense that it turns off normal hormone levels. There's a logical theory there about why Depo-Provera could cause loss of libido in some women."
Dr. Jerilynn Prior points out that the libido gets a surge from hormones every month at mid-cycle, just prior to ovulation. Dr. Prior says that surge is probably reduced by Depo-Provera but she believes the loss of libido is most likely related to a set of issues, perhaps a combination of weight loss, depression and hormonal changes.
"I don't want to make Depo-Provera out to be the villain. It's a plausible side effect, but many other things also change," she said.
Dr. Mary Jane Minkin says, "Nobody knows what the exact agent in the sex drive is. But a major league one involved in libido is testosterone, which women make as well as men." She says that when a drug suppresses the ovaries, it may suppress testosterone production, which may reduce libido. However, in her personal experience, many patients on Depo-Provera say they still have healthy libidos.
Dr. Zava says that when he measures hormones in young women on Depo-Provera, he finds the levels are quite low. He agrees that reduced testosterone is the culprit. "Testosterone is libido. Women need it for brain function and libido," he said.
Planned Parenthood nurse practitioner Sharon Hebner said they do get some complaints about loss of libido with Depo-Provera, but such complaints also rise from a number of birth control methods. She points out that pregnancy, other medications and problems with partners can also cause loss of libido.
"Usually if someone says that's definitely a problem, they just switch," Hebner said. When women stop Depo-Provera, however, the effects continue. The uncertainty and helplessness women feel at that point may help explain why some women hate it so much, even if others love it.
Dr. John Lee hates it. "I say it's totally useless. It never needs to be used."
Thousands of women agree with him, including Lora Elsom.
"Seriously. You get a shot that takes a few seconds and then for two years -- for me -- you're affected. That's just crazy," she says.
"I would never do Depo-Provera again. That's for sure." Her eyes get big and she's emphatic. "I was concerned I was permanently changed. How long did it last? Definitely, no sex for a year."
Elsom shrugs. "Of course I ended up having sex, but I hated it every time, and I felt resentful, like it was some weird sacrifice. Then I was okay with having sex, but didn't enjoy it. And it has been really reassuring to know my body came back, and now I'm feeling, okay, I want to have sex now."
Elsom is smiling and joking about sex, which she couldn't have done two years ago. "Which is a nice feeling, really liberating."
Tom Grant is a staff writer at the Local Planet Weekly in Spokane, Washington.
Ali Ali Bin faces a death sentence. And one of the few human beings standing between Ali and his fate is a chaplain named Rick Kienholz.
Kienholz makes his living as a counselor, but he met Ali while offering religious guidance at Martin Hall, a jail for juveniles in eastern Washington state. A number of local counties use Martin Hall to house accused thieves, robbers and murderers. But federal agencies like the US Immigration and Naturalization Service (INS) also use Martin Hall to house innocent kids, like Ali, who languish in bureaucratic limbo, sometimes for years.
Kienholz first spotted Ali on a Sunday night at Martin Hall about a year ago. "I saw this very tall black kid, sitting by himself, and he was not interacting with anyone," Kienholz says. The staff said Ali had been there two days and didn't speak English.
"So I went and sat by him, and I started speaking Swahili. And I thought his jaw was going to drop on the table," Kienholz says. The chaplain knew a few words in the African language, but not many, so they couldn't communicate well. But they bonded.
And over the next few months, Kienholz would learn Ali's horrifying tale.
At age 14, Ali lived with his parents in Mombasa, Kenya. His grandfather had founded a political party, but the opposition was now in power. One day, forces from the party came to Ali's home. His mother opened the door.
"And they hacked her to death with machetes, while Ali, with his 11-year-old sister, was hiding in the rafters," Kienholz says.
Ali's sister went to live with their uncle, but Ali spent the next three years as a street kid. At age 16, Ali saw some political banners belonging to the party that killed his mother. He and his friends pulled down those banners and burned them. They were arrested.
"He was held without charges for six months in a Kenyan jail, where he was daily brutalized," Kienholz says. Ali was afraid he'd be killed. Then authorities placed Ali in a work release program. He used that opportunity to escape and stow away on a ship, a ship that would eventually dock in Seattle.
"He didn't commit a crime. He didn't sneak into the country. He came on a ship, and he immediately came to INS and requested asylum," Kienholz says. Ali was imprisoned at Martin Hall.
Martin Hall has been a lockup for dozens of children held by INS. One of the former case managers there is highly critical of how those young would-be immigrants were treated.
Randy Wenrich, who worked at Martin Hall for about three years, wrote a letter to Spokane County Superior Court Judge Neal Q. Rielly this February. Wenrich leveled serious complaints about the handling of INS juveniles. He was primarily concerned about the cases of Jin Rong Yiou and Xue Zhong Zhou, a brother and sister, ages 11 and 14, who tried to enter this country in October of 1999.
Wenrich said that Xue Zhong contracted hepatitis while at Martin Hall, possibly while he was locked up with four other Chinese boys in a small cell. "I don't think it is fair to send him back to a country with a disease he may have caught due to his treatment while here -- especially since he will not get the appropriate medical treatment there," Wenrich wrote.
He also complained that Jin, who was born as the second child in a country with a one-child policy, was the victim of discrimination in China. He said their defense against immigration charges was financed by the very smuggler who brought them into the country, and that the attorney failed to represent the best interests of the children.
Wenrich also leveled broader charges. "I left [Martin Hall] ... because of the continued prejudicial and discriminatory treatment of all the immigration juveniles and because I saw their situations progressively getting worse instead of better," he wrote.
He charges that the non-criminal, juvenile INS detainees are subjected to the following:
* Placed with violent criminal offenders who bully and control them.
* Locked up for months without getting the required hearing on placement in less restrictive housing, such as foster care.
* Not allowed case managers to help with legal or emotional issues.
* Confined in isolation if they act out.
* Not allowed the privilege of an initial phone call, and may not get to make calls for days or weeks.
* Not provided adequate translators or caseworkers.
* Given inadequate legal counsel so they often end up being deported back to life-threatening situations, even though they have valid asylum cases.
Wenrich fears that Jin Ron Yiou and Xue Zhong Zhou will be sent back to just such a situation. He says their mother borrowed $100,000 from a loan shark in order to ship the children to America. Wenrich believes that if the children are returned to China, they will end up in detention, or indentured servitude. Yet they languish in a holding facility, now in California, while the government argues that there is no credible fear of persecution upon their return to their homeland.
The possibilities facing Ali Ali Bin are even worse. On the final day of his recent INS hearing, his uncle sent an email from Kenya.
"[His attorney] had been trying to contact people in Africa to validate his story," says Kienholz. "And [his uncle] wrote a letter to Ali, informing him that two of his cousins were murdered while in prison, and that police who came looking for Ali when he didn't show up [from work release] told his uncle, 'When we find him we are going to bury him.'"
That did not sway the judge in Ali's INS case. After four hearings, he ruled the story was all a fabrication. He ordered Ali deported.
But Kienholz believes Ali.
"My profession is watching people. And I've watched him. I've watched him talk about his mother's death. I've watched him tell about being brutalized in jail, how he was beaten, had his teeth knocked out, his fingers broken. And I believe him. I believe him with all my heart," Kienholz says. "And Ali knows that if he gets deported to Africa he will get turned over to the very people who will kill him."
Kienholz, like Wenrich, sees an INS system of justice weighted against young people who need asylum. They see youths confronted with a ponderous legal system and a language they can't understand. In some cases, differences in dialects -- such as Ali faced with his Swahili -- make it impossible for translators to work accurately.
"I sat in three of the four court hearings, and in my personal opinion, I saw a judge who from the very beginning had his mind made up," Kienholz says.
Ali is lucky enough to have three attorneys in Seattle who have agreed to work on his case for free: Evans McMillion, Diana Tate and Sarah Tune. They will appeal the INS decision, which could take another year or more. He now sits in a detention facility for adults, because he has turned 18. Kienholz has offered to take Ali into his own home, if the government will release him. He observes that illegal immigrants who have worked in this country three years are being offered amnesty, but Ali can't seem to get out of jail.
"Are you afraid that he'll die if he returns to Kenya?" I ask Keinholz.
"I don't have a doubt in my mind," he says.
Of course, Keinholz may be wrong. Yet the price of his error is small: one more of the huddled masses striving to be free would find a home in this country. However, if the INS court is wrong, Ali Ali Bin will pay the ultimate price. And this country can wash its hands of him.
INS public affairs officials did not return our phone calls.