Last year I presented data on the relationship between pregnancy and lymphedema. Since that time more women have responded to the survey and I presented the update of that survey at the Lymphedema conference held in Dallas, Texas sponsored by Healthtronix.
This survey was prompted by several questions that were sent to me asking whether pregnancy worsens lymphedema. For example, a woman had primary lymphedema and was considering an abortion because she was very fearful of her lymphedema getting worse. She already had a bad case of lymphedema and felt that if it got much worse she would no be able to function. There was no published data to help answer these questions and so I posted a survey on our web site to help find some answers to this question.
First, I want to say that the results of the survey are limited by a number of factors. The number of women answering this survey, while growing, is still relatively small. In addition, this is not a random sample of all women with primary lymphedema who have had a pregnancy and effective treatment may change the outcome. This survey only documents the experience of the women who have responded. However, I appreciate the fact that these women have taken the time and effort to answer these questions and I hope that this project will continue to develop and provide additional information that is helpful to women facing this problem.
33 women responded to the survey. Of these, 26 had primary lymphedema and this survey will focus on those 26 responses. Most women with secondary lymphedema have it as a result of treatment for breast cancer. As a result, the majority of these women are past their child bearing years. In addition, the treatment, especially chemotherapy, generally causes infertility. So, most of the women who have lymphedema during their child bearing years have primary lymphedema. I will analyze the results of the women with secondary lymphedema separately. Since there are only a few responses, the data is still limited.
The average age of onset of lymphedema in this group of women with primary lymphedema was 10.7 years but the range of responses was very wide. Some women developed lymphedema at birth while others developed lymphedema in their late teens or twenties.
Of the 26 women with primary lymphedema who responded to this survey, 12 of 26 (46%) reported worsening of lymphedema with the first pregnancy. Of the 12 who had worsening of lymphedema during pregnancy, 7 reported that the lymphedema returned to baseline after delivery so that 5 of 26 (19%) reported persistent lymphedema after pregnancy. However, among the women who improved after delivery, 2 of these women subsequently had worsening of lymphedema within a year. As a result, 7 of 26 (27%) reported lymphedema that was worse following their first pregnancy.
Here are several comments from these women.
"After delivery my leg went back to it's prior size before becoming pregnant. However, after 7 months my leg again became swollen and progressively got worse."
"In my second trimester my ankles began to swell and the doctor assumed it was all normal. After the delivery of my child the swelling in my right leg / ankle went away but the swelling in my left leg continued."
These results suggest that about half of the women with primary lymphedema experienced worsening of lymphedema during their pregnancy. Among the women who reported that their lymphedema worsened with pregnancy, about half of these women reported improvement after delivery of the baby. As a result about 27% (7/26), of the women with primary lymphedema experienced persistent worsening of the lymphedema with pregnancy.
Some of these women had additional pregnancies and I will present the analysis of the results in the subsequent edition of eNews.