— Ten years ago, Patty Apkarian was a single mom with two young daughters when her doctor made a startling discovery: She had cervical cancer. Just 26 years old at the time, Apkarian underwent an immediate and necessary hysterectomy to remove her uterus and cervix.
But after her hysterectomy, Apkarian developed a side effect most women never hear about. The surgery had destroyed her ability to enjoy sex. She had genital nerve damage, decreased sex hormone levels, and severe pain during intercourse.
"It got to the point where we couldn't have sex. I mean it was just so painful, forget it. We couldn't do it. And, and we were a young couple, so we wanted to have sex. And we couldn't," she said.
"It just go to the point where it wasn't pleasurable for her," said her husband, John.
‘It’s All in Your Head’
Apkarian said her doctor gave her no warning that she may suffer these side effects after the surgery. And after the surgery, she said, her doctors didn't want to talk about her sexual problems.
"The whole thing was like, 'It's all in your head. There's nothing wrong. It will go away.' And I knew it wasn't in my head. But I couldn't get anyone to listen to me," she said.
Apkarian's experience is not surprising to Dr. Stanley West, author of The Hysterectomy Hoax. He says doctors are taught that sexual side effects after hysterectomy are rare.
"When I was in medical school and residency, I was told, 'A hysterectomy is good for women. It gives them a new lease on life,' " he said.
A complete hysterectomy is major surgery that removes the uterus and cervix to treat problems like heavy menstrual bleeding or pelvic pain. Often the ovaries and fallopian tubes are removed as well. Only 10 percent of hysterectomies are done for cancer. And women in the United States are four times more likely to have a hysterectomy than women in Europe, New Zealand or Australia.
Many women who undergo the surgery report no negative side effects related to their sex lives, and for those with medical problems that negatively affected their sex lives, the surgery can be an improvement.
Everybody agrees that some hysterectomies are absolutely necessary, for example, those for cancer or for massive, life-threatening bleeding. But the majority of hysterectomies fall into a gray area, where the bias of the doctor and the lack of information available to patients can play a big role in making a bad decision.
‘I Felt Totally Asexual’
For the last 16 years, Elizabeth Plourde has dedicated her life to speaking and writing about the risk of sexual side effects after hysterectomy, because she was stunned by what happened after her own hysterectomy.
"I went from a thousand miles an hour to zero. And it was just extreme. Absolutely extreme. There was absolutely no ability to respond whatsoever at all anymore. I felt totally asexual," Plourde said.
Hormone therapy helped restore some of Plourde's sexual response, but it couldn't replace her uterus and cervix, which were a significant part of her orgasmic response.
Even though the hormones restored her sexual interest and response, Plourde says she still lacks a structural response, which, she said, has made a "vast difference in the quality and strength of the orgasm."
Plourde has heard from thousands of women who say the same thing — that for them the loss of the uterus and cervix has a big effect on sexual response.
"The women are writing that the loss of the cervix is huge," she said. "That they can't get triggered into orgasm without the exquisite sensitiveness of all those nerve endings in the cervix. That the loss of the orgasmic response of the uterus and its contraction is huge."
Medical Knowledge of Surgery’s Impact Is Lacking
20/20 has been investigating this war of words between women and doctors over the truth about sex after hysterectomy, and medical correspondent Dr. Tim Johnson said what he has learned in the past year has shocked him. When it comes to the science of the female sexual response, it seems we're still in the dark.
In fact, on a scale of one to 10, Dr. Sandra Carson of the American College of Obstetricians and Gynecologists said, "I would say we know probably about a score of two about the female sexual response. … And it's disappointing."
Furthermore, doctors know very little specifically about sex after hysterectomy. Even though there are many studies on the subject — many of them telling doctors women can have better sex after the surgery — according to Dr. Anne Katz, most of these studies turn out to be flawed.
Katz is an expert on this subject and she says the big problem is that the studies don't ask the right questions. "When you think about it in the context of reproductive medicine and sexual medicine, that's just awful," she said. "We've been sort of bumbling around in the dark."
In fact, many gynecologists don't know much about women's sexuality. One of the few experts in this field, Dr. Irwin Goldstein, a urologist who founded the Institute for Sexual Medicine at Boston University School of Medicine, paints a bleak picture of how little experts know about female sexual response.
"We have no data on the nerves as they come from the uterus to the vagina. We are dying to study this. We would love to have these mapped out. So we don't have the information," Goldstein said.
And that's not all. Surprisingly, no one has carefully studied whether ovaries left in after a hysterectomy are damaged.
"We could measure the ovarian artery and its blood supply, and we could do it after hysterectomy. We could do it in 10,000 women before and 10,000 women afterward. And then I could have your answer for you. But someone has to get that research going and fund it and be interested in this," Goldstein said.
What Goldstein said he does know for sure is that women with sexual complaints after hysterectomy deserve to be taken seriously.
For Patty and John Apkarian, he became their first hope in years.
"It was amazing," said Patty Apkarian, "Because it wasn't in my head. Everything wasn't in my head. And when I left there, I was like this weight had just been lifted off my shoulders."
Unfortunately, there is no miracle cure for her nerve damage, but she is now taking medication to raise her hormone levels and has started to notice a small improvement.
Challenging the ‘Just Take It Out’ Mentality
Given the unpredictably about sex lives after surgery, some doctors have decided it's time to break ranks and talk tough.
West said he tries to be completely frank with his patients. "I will try to be as blunt as I can and I will tell them that your sex life will go to hell in a handbasket and you can't stop it. You can't reverse it. You can't put it back, so don't take it out."
Susan Urquhart understands this well. She agreed to a hysterectomy after her doctor insisted that a benign tumor in her uterus, called a fibroid, had suddenly gotten bigger. Fibroids are quite common and are the No. 1 reason for hysterectomy. Her doctor said Urquhart was done having children, so why keep the uterus?
"She began to browbeat me into the surgery," Urquhart said. "She kept saying, 'I am booking surgery in just a few weeks … If I can sign you up today, all the problems you are experiencing will be over.' "
Urquhart agreed to surgery because she was taught to trust her doctor. She did, however, double-check when the doctor said her healthy ovaries should come out as well — to avoid the tiny risk of ovarian cancer in the future.
"I talked to two other female gynecologists. And they each seemed to think that, you know, for a woman that was 55 years old, it was just absolutely foolhardy, to keep these liability organs," she said.
That was conventional medical wisdom at the time, so Urquhart consented to having both her uterus and her ovaries removed, believing that the positives far outweighed the negatives. She was shocked by how she actually felt after the surgery.
"I didn't know what was wrong with me," she said. "I just couldn't stop crying. I cried. I couldn't sleep. I was wired. I was pumped. I became sleep-deprived. My hands had tremors. My legs shook."
Her husband, Brian, was concerned about the change in her. "My wife was such a strong, positive person. Before the surgery she never had a moment of depression. And then, after the surgery, she was a totally different person. And I was really scared," he said.
Urquhart has been working with a specialist for six years trying to get her hormones in balance. But she will never forget his words after he looked at her pre-hysterectomy ultrasound.
"He looked at my ultrasound and shook his head from side to side and said, 'She's a good doctor, but you didn't need the surgery,' " Urquhart said.
Most Hysterectomies May Be Unnecessary
The problem of sexual dysfunction after hysterectomy is even more tragic when the hysterectomy is unnecessary. And a major study published in the February 2000 issue of Obstetrics and Gynecology suggests they often are.
The study found two big problems: Doctors often do hysterectomies without first doing adequate diagnostic testing; and doctors often fail to try another treatment before hysterectomy. The authors found that 75 percent of the hysterectomies in the study were "recommended inappropriately."
It's been estimated as many as 80 percent of American women have fibroids and that most need no treatment. But if the fibroids need to come out, you usually don't need a hysterectomy, says Dr. Michael Glassner, medical director for reproductive medicine at Bryn Mawr Hospital in Pennsylvania.
According to Glassner, probably close to 100 percent of fibroid cases can be resolved without surgical intervention.
Glassner performs a surgery called myomectomy, which removes just the fibroids and leaves the uterus intact. But many doctors downplay the advantages of myomectomy and other treatments in favor of the quick solution of hysterectomy.
"It's harder to manage a woman who is calling you every month with problems with bleeding or pain and try to keep her happy and calm and comfortable," said Glassner. "Do a hysterectomy and it's six less phone calls a day."
Dr. Herbert Goldfarb, who specializes in less invasive methods to treat gynecological pain and bleeding, says there's another reason doctors like hysterectomy — money.
He says that the present payment schedule for managed care basically encourages doctors to jump to hysterectomy because it will pay more for that surgery than it would for diagnostic techniques that might avoid hysterectomy.
Twenty years ago, Nora Coffey founded Hysterectomy Educational Resources and Services, known as the HERS Foundation. From her experience with the women who consult HERS, she has come to the conclusion that a hysterectomy is almost always unwarranted and unnecessary.
To date, HERS has counseled more than 600,000 women, and, Coffey said, "98 percent of the women counseled by HERS who were told they needed hysterectomies, did not need them and did not get them."
The majority of women who seek medical help and are told that they need a hysterectomy have either bleeding problems, genital bleeding problems or pelvic or abdominal pain.
Coffey said these are just symptoms. "So you need to know, if you have a symptom, what's causing it? How do you solve the problem? You don't just start taking organs out to solve this problem," she said.
West said women will have to take the lead in changing the prevailing "just take it out" mentality of the gynecology profession.
Plourde says this is beginning to happen. "Women are finally saying, 'I'm not alone.' … I think this is really key, that women are finally saying, 'Gee, I'm not alone.' And they are getting it."