— 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.