Nancy Nielsen

Edmore, Michigan

On August 20, 2013, I had a complete, radical, abdominal hysterectomy. I had a growth in my abdomen that had become painful. I was referred to a gynecologist/oncologist in Grand Rapids, Michigan for the surgery.

The doctor removed all of my female parts, my appendix, and 50 lymph nodes. No cancer was found. I went home to recover. It was a long and painful time.

I began to notice that my right leg was aching and swollen. I didn't know what was happening. I had never heard of lymphedema. The surgeon had never mentioned it and the large book that I was given to read before the surgery never talked about lymphedema.

However, a friend had recently had breast cancer surgery at another hospital. She told me about what she knew about lymphedema. I looked on-line about the symptoms. I had those symptoms. I called my surgeon to explain my concerns and ask for advice. I was told I had lymphedema.

I was referred to a therapist for treatment. After 6 weeks of massage and tight wrapping of my leg, I was released from therapy to do my own self massage and to wear a thigh-high compression stocking. I followed all of the instructions.

I developed a lympheocyst that required a surgical procedure to insert a drain and receptacle for the drainage. Also. at a later time I found that I had developed several hernias as a result of the abdominal hysterectomy. I will now need to undergo a surgery to repair the hernia damage. When I asked the surgeon who had done the hysterectomy about why I was never informed about lymphedema, I was told, "Well, it doesn't happen very often." I don't believe that to be true. Because a hysterectomy and breast cancer are "women's concerns," they might not get the attention that they need to receive. I will now live with lymphedema for the rest of my life.

Lymphedema has diminished the quality of my life. I question why 50 lymph nodes were removed and why I was never told about the likelihood of lymphedema. I would hope that my story would help other women to think long and hard about having a complete, radical, abdominal hysterectomy. Please look into other options. No one would want to develop lymphedema, lympheocysts, and hernias because of this surgery.