Hysterectomy Interview: "The Biggest Mistake of My Life"

Over a decade ago, Susan's elective surgery sent her into a spiral of confusion, depression and anger that nearly ruined her business and marriage. As a result of her hysterectomy, Susan felt sexually barren and hormonally unbalanced. "I thought I had chosen a reputable doctor," she wrote. "I asked good questions of her." Yet Susan still found herself coerced into getting a surgery she now cites as the biggest regret of her life. Today, Susan is an activist who seeks to help women understand their choices when it comes to hysterectomy and fibroids.

Cornelia: Susan, what is the most important piece of advice you have for women considering hysterectomy?

Susan: To be conservative. I think that these body parts, they are really part of who you are and they connect to other organs in your body. Everything is there for a reason. They don't take body parts out of men, just because they reach a certain age. They don't remove gonads, which are what the ovaries are. I think the only reason to really do it is to save your life.

Cornelia: What was the biggest change after surgery?

Susan: I was depressed. I grieved for my organs. I was sexually depressed. My brain was different. I couldn't sleep. They call it instant menopause but it's not - it's much worse. I would get lost. I didn't know if I was on foot or horseback. I just couldn't stop crying. I really think it's very cruel. I found that the uterus was involved in my sexual response. For me there was a loss of feeling sexually. It's very damaging surgery and I wasn't told any of these things by my female doctor.

Cornelia: You say that you felt betrayed by your doctor - what can other women learn from your experience?

Susan: A lot of women who've had the surgery don't talk about this afterward and I don't understand it.  I knew people who had this surgery and no one said one negative word to me. I felt betrayed.  Why wouldn't you tell a woman, a friend, that it had impacted your life negatively? I don't understand this silence. Everyone should be told. The vagina is shortened with hysterectomy, if you take the cervix. There are nerve endings that connect from these parts that run up the spine to the brain - they affect everything.

Cornelia: How did writing "Uninformed Consent" help you sort through your emotions?

Susan: It was my saving grace. I was so angry. I really hadn't planned on this to be traumatic. My doctor had her way of doing things and she wanted to do the surgery. I was stunned by the results. I was floundering so I just started writing things down. After 10 years I had compiled the whole thing and I had a record of it. That's how I dealt with my anger - I wrote and wrote and wrote. It was a journey - a diary. My editor put it into something that people would pick up. He said "This is a love story - because your husband stayed with you." It was very therapeutic.

Cornelia: Have other women come to you with their stories since you've started speaking out?

Susan: Yes. I think it's very helpful for women to reach out. I think it gives you closure. I was fortunate to be on The Dr. Oz Show. When I first started talking about this 13 years ago people didn't want to hear about it - it made them feel uncomfortable. People were closed minded about it. They said, "Why doesn't she just get over it and get on with her life." I thought, "I have to educate women" I can do this and maybe make a difference. It was my therapy and my healing.

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