Most women of childbearing age have normal monthly periods. For women like me with bleeding disorders, monthly periods are a “shark week event” with horrific bleeding and pain. The pain made me sweat, shake, and vomit.

The severe bleeding had other consequences: I was iron-deficient, anemic, and exhausted. After work, I would crash on the couch. Bleeding controlled my life.

In 1995, I turned 30, and at the time, the medical community had little to offer women with bleeding disorders. I tried birth control pills, which helped for a few years. My hematologist prescribed DDAVP infusions (desmopressin acetate injections) and Stimate (desmopressin acetate nasal spray), but neither form of the medication helped. An experimental medication, Amicar (aminocaproic acid), was starting to be used for women at my hemophilia treatment center in Milwaukee. I looked up more information and found that Amicar was given to people with bleeding from life-threatening gunshot wounds. Oh, my. Amicar helped, but it gave me nausea, and I needed to take it hourly.

Currently, tranexamic acid medicines are routinely used for women with heavy bleeding. I have one called Lysteda on hand today.

My gynecologist tried her best to help. She had tricks up her sleeve, including regular dilation and curettage procedures to thin my uterine lining. But the heavy bleeding always returned. The surgeries sometimes caused hemorrhaging days later, landing me in the hospital.

Decision time

Days after one of these procedures, I was enjoying breakfast with my mom at a diner in Waukesha, Wisconsin, when my gynecologist called. I stepped outside to take the call. She said that the bleeding during the procedure had been so bad that she’d needed help to stop it. I could have died, and there was no way my uterus could carry a child. Everywhere she had touched had hemorrhaged, and the bleeding had been difficult to control. I needed to consider a surgical end to my uterus. She recommended an endometrial ablation or a hysterectomy.

My gynecologist said that if I were to show up to an emergency room with my bleeding as it was, I would need an emergency hysterectomy. It was better to have a planned procedure with the involvement of my hematologist.

As Johns Hopkins Medicine explains, “Endometrial ablation is a procedure to remove a thin layer of tissue (endometrium) that lines the uterus. It is done to stop or reduce heavy menstrual bleeding. But it is only done on women who do not plan to have any children in the future.”

I returned to my breakfast with my mom and had to break the news to her. The disappointment showed on her face, but she also knew the problems I was experiencing with bleeding. She knew of the procedures I’d endured to help control the bleeding and the complications afterward. Given my history of gynecological bleeding, I was very anxious about having any type of surgery.

The decision was difficult, no doubt, and I had to take time to mourn the children I wouldn’t be able to have.

After several decades of trying to control the bleeding and preserve my fertility, I gave in and had an endometrial ablation to end my periods. If the ablation didn’t work, I would have a hysterectomy.

Surprisingly, there were no bleeding complications during or after the ablation surgery. The procedure changed my life. I no longer had to plan my schedule around my monthly period. There was no bleeding, so I didn’t even know when my period was. Severely anemic? Nope! Not anymore.

I’ve never had children, but as a result, I’m a superaunt to my five nephews and have taken in foster children. I don’t feel cheated or angry.

The importance of gynecologists

Many women visit their gynecologist for help with their heavy menstrual bleeding. Gynecologists hopefully will refer women to hemophilia treatment centers for a prompt assessment of bleeding disorders.

I was diagnosed with von Willebrand disease and hemophilia B before my menstrual cycle started. We’ve since come a long way. Awareness and treatment of bleeding disorders in women have improved. More women are receiving treatment, protecting their fertility, and having children. That’s progress.