eNews Online - September 1999 Edition

eNews Online
September 1999 Edition

This Lymphedema eNews is being generated through your request from our website.

Pregnancy Survey Results

Several months ago one of our readers asked whether pregnancy caused lymphedema to get worse. I reviewed the published literature and, as is too often the case, found very little published information. In addition, what information was available was based on very limited numbers of patients. To gain additional understanding about pregnancy and lymphedema, I created a pregnancy survey for our readers. 13 women have responded to that survey and I am including a summary of their responses and insights.
12 of the 13 women had primary lymphedema. The average age of onset was 10 years of age and the range was from 1 to 16 years of age. 1 patient had breast cancer and a mastectomy and developed lymphedema during her first pregnancy 9 years later.

Of the 12 patients with primary lymphedema, 9 of 12 (75%) had the onset of lymphedema or developed worse lymphedema during their pregnancy. Most of these women found that the lymphedema got worse in the final months of their pregnancy. 2 women reported having persistent lymphedema after delivery.

8 women reported second pregnancies and 5 of the 8 (63%) had worsening of their lymphedema and all reported that the lymphedema was worse with the second pregnancy. All 3 women who did not report worsening of their lymphedema had miscarriages that occurred between 3 and 5 months of gestation.

4 women reported having third pregnancies and 3 of the 4 had worsening lymphedema with the pregnancy and all reported that the lymphedema became progressively worse with each pregnancy. The remaining woman had a miscarriage.

One woman reported a 4th pregnancy and had worsening lymphedema with the 4th pregnancy but that the lymphedema got better after the delivery of her child.

The one respondent with secondary lymphedema commented that she had been free of lymphedema for 9 years after her mastectomy but developed lymphedema in her hand and forearm during her first pregnancy.

The only women not reporting worsening of their lymphedema during their second and subsequent pregnancies had miscarriages. Miscarriages occur in about 10% of pregnancies so it is notable that so many of the women responding to this survey reported miscarriages. Please keep in mind that a small number of women responded to this survey and any results represent the bias of any small sample. However, it is also possible that the incidence of miscarriages is higher than the expected in women with lymphedema. I will continue to report on additional findings of this survey as we get more information.

Many of the comments made by the women provided interesting insight into the problem of lymphedema during pregnancy so I have included a sample of these comments below.

I recently received a question about whether breast reconstruction causes lymphedema to get worse. Again, there is very little published information so I will create another survey and make it available to anyone who has experience with lymphedema and reconstruction. The breast reconstruction survey will be available on our website in the next few weeks.

Tony Reid MD Ph.D


"I am currently in my eighth month of pregnancy and have doubled the size of my left leg. Prior to the pregnancy, I had not swelling in my right leg. Now in my eighth month of pregnancy, my right leg is swelling. I am hoping the swelling in my right leg will go away after the baby is born."
"By 11-12 weeks of pregnancy, my leg was fuller and growing uncomfortable. I was able to continue working full time as a nurse until the 20th week of pregnancy. At that point my leg was heavy and uncomfortable. I was comfortable, however, if I was lying down. During the pregnancy, I gained over 60 lbs., I was very congested in my entire body. I remember having to put my left leg and foot under cold water to reduce the discomfort. I was unable to wear any shoes other than ballet slippers, and could only do minimal walking around the house. After my daughter was born, one to two weeks after her deliver, my leg returned to essentially a pre-pregnancy baseline. My leg improved as I took off the weight gain of fat that naturally occurs with pregnancy. "
"I am currently at the last stage of my third pregnancy, and the swelling is once again more pronounced than in previous months. I tend to be lazier about the stockings this time, so my swelling could probably be better."
"Thank you for posting this survey, I would have enjoyed having some preview of the effects of childbirth on lymphedema. Overall, pregnancy was a temporary setback, which is an important consideration. However, I was still uncertain enough not to attempt my good luck with a second pregnancy. Who knows what the outcome would be, especially after age 35. My personal experience with this condition has led me to believe that insect bites are far worse for my leg. If I get bites on my left leg, my leg gets wors e, and doesn't want to return to baseline. It's as if I "loose ground" whenever this happens. The increase with pregnancy, although very substantial, was reversible. It seemed to me to be in indication of lymphatic system overload, rather than tissue scaring or damage. I did notice that as my weight returned to normal, my leg kept improving."

Lymphedema Chronicles

Many patients after reading our eNews and the various patients we have highlighted, were inspired to write their own experience with lymphedema. I have had patients send me their experience and indicate that I could use their story as a feature. Patients have told me that it has been beneficial for them to be able to share their story, and has been comforting to read other stories to let them know they are not alone. Many patients feel isolated and at times that they are the only ones suffering or have exp erienced the challenges that lymphedema presents in one's life. To know there are others with similar backgrounds and challenges can be beneficial.

What we have created on our website is a section called Lymphedema Chronicles. This is a place you can go and read about other patients and their experiences. If you would like to contribute your experience, visit this new feature on our main site.