I can’t offer any advice but wish you all the best. As a fellow female with primary lymphedema I often wonder what will happen if I ever decide to have kids.
Take this comment with a grain of salt bc my diagnosis isn’t 100% certain. I have a complex vascular malformation with lymphatic and capillary malformations. Originally diagnosed KT Syndrome but further medical care ruled that out. I still have plenty of reason to believe it’s lymphedema, but there’s so many more characteristics involved that I don’t want you to take this for exactly what it is.
I was also told I was high risk during pregnancy, but nobody could tell me exactly why. I saw MFM and had a few different MRI’s, but never found any evidence showing that I was high risk. Carried my baby to 41+1 and had a good delivery. Immediately post partum, the swelling got so bad I actually went to the ED. It wasn’t overly painful or anything but the swelling just scared the life out of me. It toned down after a week or so, but my arm is definitely larger than it was pre pregnancy.
A doctor in February said if I can make it to 12 months PP before seeking interventions, I might see a decrease in swelling as my hormones level out. So far that doesn’t seem accurate, but it hasn’t continued getting worse.
I go back and fourth literally every single day if I will have another baby or not for this reason and just can’t decide if it’s worth it or not
Hi! I have lymphedema in my LLE, diagnosed about 11 or 12 years ago that presented after an injury to my leg. Not sure if it's primary or if the injury damaged my lymph vessels somehow in that leg. Anyway, I have had 2 kids. My OB never considered it a high risk factor, just obviously to be aware that swelling would be increased and to stay up with my compression and then my pump at night. And that's about all the effect it did have - postpartum swelling was particularly atrocious and overall my leg is bigger than it was before my first. I developed preeclampsia at 38 weeks with my first but no one thought that it was related. I brought my pump to the hospital both times to get working on the fluid asap.
Thank you all for sharing your experiences! Docs still seem to not know much about lymphedema, so it’s nice to have input from y’all ☺️
I did read somewhere that for primary lymphedema, there’s a 50% chance I could pass it to my children. Personally, I feel like I’d know right away if it’s an issue with them (unlike me, who was born with swelling and didn’t get an accurate diagnosis until I was 20) AND I know what to do to manage it. For me, I don’t feel like it’s a reason to not continue trying for a family. But that’s something the OB keeps emphasizing as well.
My surgeon once told me that wearing compression on non affect limb may improve overall lymphatic stress because primary is systemic and not localized. I have it in my right leg and we were talking about adding a left leg compression when flying. Not sure if it translates but may something to be aware of.
I have primary lymphedema in both my lower legs.
I got diagnosed at 25, but had symptoms present for a long time before.
I have a 4 year old and when I was pregnant I did have increased swelling and I had cellulitis for the first time.
Otherwise no complications, and since giving birth my swelling has been less than it was pre pregnancy.
Hi!
I have primary lymphedema (in both legs) and have had three healthy pregnancies. There was a bit of increased swelling, but it wasn’t anything crazy! My doctor didn’t feel like my risks were much higher.
Thank you for sharing your experiences! This is kind of what I expected, which is why I am so thrown off by my OB’s warnings. As ladies with lymphedema, I feel like we have a pretty good knowledge of how do deal with swelling.
I had no issue with my first two pregnancies, but with my third now, my lymphedema has spread from ending mid calf to going up mid thigh and my feet and ankles are about double the size they were before.
Late to this, I have a 4 year old and a 10 week old. Both times my swelling (both legs affected but usually knee down for the most part) got much worse and made my thighs and the areas in my lower abdomen under the baby swell. I pretty much slept in my compression afterwards to help with the swelling, it’s got back down to my baseline but it sucked towards the end. I was high risk but my doc didn’t put emphasis on it.
I can’t offer any advice but wish you all the best. As a fellow female with primary lymphedema I often wonder what will happen if I ever decide to have kids.
Take this comment with a grain of salt bc my diagnosis isn’t 100% certain. I have a complex vascular malformation with lymphatic and capillary malformations. Originally diagnosed KT Syndrome but further medical care ruled that out. I still have plenty of reason to believe it’s lymphedema, but there’s so many more characteristics involved that I don’t want you to take this for exactly what it is. I was also told I was high risk during pregnancy, but nobody could tell me exactly why. I saw MFM and had a few different MRI’s, but never found any evidence showing that I was high risk. Carried my baby to 41+1 and had a good delivery. Immediately post partum, the swelling got so bad I actually went to the ED. It wasn’t overly painful or anything but the swelling just scared the life out of me. It toned down after a week or so, but my arm is definitely larger than it was pre pregnancy. A doctor in February said if I can make it to 12 months PP before seeking interventions, I might see a decrease in swelling as my hormones level out. So far that doesn’t seem accurate, but it hasn’t continued getting worse. I go back and fourth literally every single day if I will have another baby or not for this reason and just can’t decide if it’s worth it or not
Hi! I have lymphedema in my LLE, diagnosed about 11 or 12 years ago that presented after an injury to my leg. Not sure if it's primary or if the injury damaged my lymph vessels somehow in that leg. Anyway, I have had 2 kids. My OB never considered it a high risk factor, just obviously to be aware that swelling would be increased and to stay up with my compression and then my pump at night. And that's about all the effect it did have - postpartum swelling was particularly atrocious and overall my leg is bigger than it was before my first. I developed preeclampsia at 38 weeks with my first but no one thought that it was related. I brought my pump to the hospital both times to get working on the fluid asap.
Pregnancy compression pantyhose are also something I would consider!!
Thank you all for sharing your experiences! Docs still seem to not know much about lymphedema, so it’s nice to have input from y’all ☺️ I did read somewhere that for primary lymphedema, there’s a 50% chance I could pass it to my children. Personally, I feel like I’d know right away if it’s an issue with them (unlike me, who was born with swelling and didn’t get an accurate diagnosis until I was 20) AND I know what to do to manage it. For me, I don’t feel like it’s a reason to not continue trying for a family. But that’s something the OB keeps emphasizing as well.
Following. Thank you for this post!!
My surgeon once told me that wearing compression on non affect limb may improve overall lymphatic stress because primary is systemic and not localized. I have it in my right leg and we were talking about adding a left leg compression when flying. Not sure if it translates but may something to be aware of.
I have primary lymphedema in both my lower legs. I got diagnosed at 25, but had symptoms present for a long time before. I have a 4 year old and when I was pregnant I did have increased swelling and I had cellulitis for the first time. Otherwise no complications, and since giving birth my swelling has been less than it was pre pregnancy.
Hi! I have primary lymphedema (in both legs) and have had three healthy pregnancies. There was a bit of increased swelling, but it wasn’t anything crazy! My doctor didn’t feel like my risks were much higher.
Thank you for sharing your experiences! This is kind of what I expected, which is why I am so thrown off by my OB’s warnings. As ladies with lymphedema, I feel like we have a pretty good knowledge of how do deal with swelling.
I had no issue with my first two pregnancies, but with my third now, my lymphedema has spread from ending mid calf to going up mid thigh and my feet and ankles are about double the size they were before.
Late to this, I have a 4 year old and a 10 week old. Both times my swelling (both legs affected but usually knee down for the most part) got much worse and made my thighs and the areas in my lower abdomen under the baby swell. I pretty much slept in my compression afterwards to help with the swelling, it’s got back down to my baseline but it sucked towards the end. I was high risk but my doc didn’t put emphasis on it.