lymphedema and pregnancy

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lymphedema and pregnancy

Postby xshlynne » Mon Feb 11, 2008 10:59 am

I have lymphedema completely on my right side. The worst is my hand and right foot and leg. It came on at about age 14 and was preceded by lymphangiomas at age 11. There is no history of lymphedema in my family. The thing is, I want to have a baby and I met with a high risk OB. He told me that women with lymphedema are typically miserable during their pregnancy because the swelling becomes significantly worse. So, I'm wondering first have any women here gone through pregnancy with lymphedema and what did you experience. Also, have you seen any signs of lymphedema in your children.
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Lymphedema and Pregnancy

Postby patoco » Mon Feb 11, 2008 11:34 am

Hey Ashlynne :)

In our membership here and in the membership of our online support groups, we have quite a number of primary lymphers who have had children.

From what they have shared almost all did have a worsening of the lymphedema during pregnancy, but close to 100% of them had the lymphedema go back to the pre-pregnancy state after the childbirth.

My own mom had the same thing happen with her. She had five children and while the LE became worse during pregnancy, it reverted back to its pre state afterwards and she had no complications as a result.

As for the children, ahem, since I am a male I can't have a baby :D
But, I do have children and now a grandchild. Thank the Lord that none of them show any sign of lymphedem at all.

Our family has a strange hereditary pattern with LE. It literally slammed three generations in a row - starting with my grandma back in the 1880's.

My generation got hit the worse, then suddenly we now have two additional generations with no lymphedema. Evidently as I was told by LE genetic researchers, the gene can eventually fade out of the gene line.

I am hoping this is the case with us.

I revised our page on pregnancy recently, you may want to take a look at it.:

Lymphedema and Pregnancy ... _pregnancy

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Re: lymphedema and pregnancy

Postby juliebean » Mon Sep 08, 2008 1:34 pm

hi!!! I'm so glad to read your post. i hope this reply finds you well. i have had lymphedema since birth and as far as we know theres no family history of it with mine too. much like you my lymphedema is mostly one one side or was which I'll get into in a sec. mine is mostly on the left my arm and hand are the most affected but my leg and foot are swollen too. i also have fluid around my heart and left lung and that's always been there. and to answer your question yes i have had a baby!!!! a very healthy baby boy who is now almost 7 years old now he's never been tested for lymphedema or anything but he sees the same pediatrician i saw all my life and who helped to diagnose me as a baby so i figure he would probably know what to look for better than any one. anyway my pregnancy went wonderful!! it was considered high risk so i got more ultrasounds but you can't beat that. i was always in a good mood and happy all the time it did get a little miserable in the last month or so but who doesn't? also tho i did mostly just sit around and not do much because i did get tired more easy and something was just telling me to rest a lot so i did so listen to your body it 'll tell you when it's time to relax. OK i did have a scheduled c-section just to reduce the level of stress on me and the baby, they numb you from like your chest down but you are awake you can feel pressure and pulling it kinda feels like your being turned inside out but it is over pretty fast then your baby's here and you don't even care about the pain and well you can't really feel anything about now anyway. having my son is the best thing that's ever happened to me and i wouldn't change a thing but, there are some things you should know I'm not saying that things will be the same for you but here's my story. before having my son i was pretty much a normal teenager really i was 20 when i got pregnant but i still lived like a teenager so that's what i called myself until i gave birth to my son. anyway back to the story before i got pg. (pregnant) i weighed about 100 lbs soaking wet. i had a nice flat belly, well the pg. belly never totally went away but it didn't seem abnormal yet, but within the span of a few years time give or take a little my pg. looking belly started to slowly come back until i looked about 8 months pg. again. the doctors did lots of tests before finally just excepting what i was saying all a long that the lymphedema had moved into my abdomen area but i already had non cancer tumors around my mesintery (sorry i know that's spelled wrong but it the area around my bowel) but they had been there my whole life and not really caused any problems. most doctors have been reluctant to say that my pregnancy played a part in the lymphedema spreading so much and so rapidly but I'm almost certain it did plus my pediatrician had said that it would be a bad idea for me to get pg. but if i did it would defiantly be high risk. now I'm having fluid start to fill up around my right lung a place where it's never been before. about a month ago my right lung partially collapsed due to fluid around it they drained it off but my oxygen saturation levels never returned to normal meaning my oxygen would drop really low every time they'd take the oxygen off so now I'm on home oxygen. I've had to have fluid drained 1 other time since the first time so that's twice in a month and I've never had anything drained before. so now we're thinking that my pregnancy kinda through my whole body out of wack. so i highly recommended doing lots of research and giving it lots of thought and prayer before you decide anything and i hope i haven't scarred you or upset you by telling you these things because everybody's different and just because i had these problems doesn't mean you will i'm just saying be watching out for things. if you have any questions or would just like to talk more you can e-mail me at well i wish the best for you!!! never give up!
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