By Denise Bennett

A young, recently engaged 34-year-old is faced with an emotional decision to make. During what should be the happiest of times, planning a wedding, planning to spend a life with a man she never thought would arrive, she learns that she may have Lipedema.

She and her fiancé plan to have children, but she worries that this predisposition for Lipedema will trigger the infamous hormone surge that seems to be connected to Lipedema’s exacerbation. What should she do?

Perhaps your initial reaction to this is “don’t let Lipedema stop you from getting pregnant.” There’s nothing wrong with that thought. Many women have pregnancies and give birth, knowing they have Lipedema. But, if we are honest with ourselves, we also admit that we may be scared or concerned about how the progression of Lipedema will impact our appearance. We are afraid of the disfiguration that is possible with Lipedema as it advances, and we have all seen pictures that, quite frankly, can be frightening.

So, what is the truth about Lipedema, pregnancy and legs? Some have said, “have all your babies, and then get liposuction for Lipedema.” Some say, “have liposuction first, while your legs don’t require much debulking, then have your babies, and then do liposuction again, afterwards if you need to.”

The woman I mentioned sought out two opinions from two leaders of Lipedema research and treatment in the United States, Dr. Karen Herbst and Dr. Marcia Byrd. Their recommendations were as follows:

Dr. Herbst suggested that our 34-year-old, who is overall good health, physically active, and in good shape, continue doing what she currently does to maintain a “normal” weight, exercise regularly, eat a low carbohydrate diet, take recommended supplements, wear compression garments during her entire pregnancy, and drink a “tea” made from Barley water throughout her pregnancy. By taking these steps, Dr. Herbst indicated that it may be possible, if not likely, that she will be able to keep Lipedema at a Stage 1 without progression throughout her pregnancy and the post-partum.

Dr. Byrd takes a different approach. Her recommendation is to immediately begin wearing compression during the night. Start now, before becoming pregnant; before giving Lipedema a chance to progress. Her dietary recommendations agree with the low carbohydrate protocol, active lifestyle, regular exercise, and maintain a normal weight range as well as a variety of supplements. Continue all of this during pregnancy as well. This is where the recommendations vary. Dr. Byrd suggests that liposuction 6 months after your final pregnancy, is the best way to stop phase progression of Lipedema.

Though there has been a lot of research on the root cause of Lipedema, it is still medically unknown. Genetic predisposition seems to be a factor, hormones may be a factor, vascular insufficiencies may play a role, both in the cause and the effect. Opinions about how to handle treatment options are equally diverse. This is true for the treatment or approach during pregnancy as well.

Let’s not judge ourselves or other women. Let’s not judge a woman who is afraid of her legs growing, swelling, becoming painful and disfigured. Let’s provide as much support and information to all women who live with Lipedema each day. Let’s help them prevent, delay, manage or treat their Lipedema in any way they see fit. Individuals faced with these decisions deserve information, personal insight, medical opinions, and viable options.

This young woman hesitated in telling me her story. She was afraid that I would think she was vain for being concerned about the appearance of her legs if her Lipedema were to advance from hormonal changes during and after a pregnancy. Pregnancy is a personal decision and should be honored by all women. Those of us who have lived with extremities that impacted our self-esteem, our mobility, and our overall quality of life, understand that appearance and health are worth our consideration. Let’s support the decision everyone makes about their own body; whether to have a baby; not have a child; have surgery; postpone surgery or not have surgery at all. Let’s commit to sharing our personal experiences, if comfortable, and provide each other with the best possible information.

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