Pregnancy & Primary LE

[mlesant]

Hello. I am new to Lymph Notes, but not new to Lymphedema. I am 25 years old and I have primary LE in both feet & legs and have so since I was about 16/17. I would like to start having a family in the next 2-3 year. Aside from the LE, I would say that I'm in ok health (it wouldn't hurt to lose a few pounds here and there though). I just want to hear from any women that have gone through pregnancy with LE in their legs and if they were ok. I know everyone's body is defferent, but I just want to hear what it was like for women that have been down that road. People have told me that I should never have children since I have LE. But I have faith that I can successfully, but it would be nice to hear from any women that have actually accomplished having children with LE in their legs.

[silkie]

I have 3 children and 7 grandchildren and i great granchild
im 54 and have primary lymphedema.

I got a little larger each time my legs did swell thew doctors
put it down to fluid lol

i was diagnosed 18 months ago

you have you babies enjoy seeing them grow
what a load of bull. Some people do have problems but then so do people that are perfectly fit

hugssssssssssssss silks xxxx

[caps311]

I have primary LE since I was about 13. It honestly never occured to me that I would have a problem being pregnant with this condition since at the time my education was VERY limited and I really considered it to be cosmetic...not medical. So...I went ahead and got pregnant without a second thought...I have two beautiful children. My pregnancies were fine...I did experience increased swelling especially during my first pregnancy since my son was born Sept 1...I don't need to tell you how miserable the summer is with LE even when you're not pregnant. My daughter was born on June 3rd and I don't remeber much increased discomfort with that pregnancy. I would recommend, if it is in your control to plan your pregnancies in the more comfortable weather months and if not possible...get a great a/c, but my experience would not have stopped me from having my children...I hope the same hold true for you! Good luck...Charlene

[pernille]

Hi
I am now 31 and nearly 3 years ago I gave birth to a wonderful little boy. I have had lymphoedema in my left leg since 19 and when I was pregnant I was absolutely fine. I still used my same shoes and even went on a driving holiday. I gained quite a lot of weight (but that was really my fault) but was eager to loose it afterwards by doing my sit-ups and long (two hours) walks every day with the pram. I was not very well informed at the time but I have heard now from others they have been told not to get children if they have this condition. BUT having a child is such a great gift and even though I resently had cellulities and my leg has worsend I am still planning to go ahead with a new baby soon. AND I have not seen any clinical studies which shows that you are in a bigger risk than others - has anybody else? Being pregnant might not be a great time - it is so individual - I was just so lucky and next time perhaps I will not. But it is the chance I take.

[shantebailey]

Hello,

My name is Shante and I have had LE in both legs since I was 11 years old. I gave birth to twins 4 years ago and my pregnancy went pretty well. I only gained 35 pounds(because I wan't really eating much). I agree that you should try to plan your pregnancy during the colder months. I wasn't pregnant through the summer and I am sure that helped. I also have a mild case of genitial lymphedema due to a pump I was using before I was properly diagnosed and the only thing that I did experience toward the end of my pregnancy (I went 40 weeks then had a c-section) was and intense pressure in my gential area (basically swelling) which went away when I rested and finally after having my twins. I encourage all women that can should become mothers and don't let Lymphedema stop you from experiencing this great joy!!

[yael]

Hi everyone,

I just found Lymphnotes today and am very excited to have a community of primary LE folks to compare notes with. Sorry this first post is long, I guess I'm excited to have people to share with...

I'm newly pregnant and wanted to share some of my experience and seek the input of others.

I am 32 years old and have primary LE in both legs. I was born with it but after toddlerhood it didn't really manifest until my teens.

These days I keep it well under control by wearing my Mediven waist-high closed toe stockings (30-40 compression) without fail every day and by doing my own style of MLD massage on my legs every night. I've found that getting good sleep (at least 8 hours per night) is CRUCIAL, and it helps to keep my stress level down. The pumps and the bandaging have always been a mixed bag for me, and I don't seem to need them these days.

I am currently 3 months pregnant.
It's so reassuring to read that so many of you have had children without any permanent complications. I've been to specialists and talked to lots of folks trying to find out what risks I face and the baby faces.

It seems the baby faces little to no risk. Even the probability of directly passing on the lymphedema to my first child is statistically pretty low. So that's exciting.

The main expectation seems to be that I will probably have increased swelling in the affected limbs, and possible genital swelling. I'm hoping to stem some of this by doing water aerobics, keeping my legs elevated more, etc.

My PT has given me Circ-Aid 2000 nighttime leg sleeves to wear, but these are bulky and very warm, so I'm reluctant to try. If anyone has experience (good or bad) with this product I'd be interested in hearing about it.

It seems there are no maternity waist high stockings in 30-40 compression, so that's going to be another challenge. The knee and thigh highs just don't work for me. My PT says I should just try cutting the elastic band at the waist. Anyone have a better solution?

I know from experience that weight gain definitely makes my LE worse. In my college years I weighed 40 pounds more than my current 145 pounds (a bad combo of depression, binge eating and swelling), but as soon as I recovered my emotional health and lost most of the excess weight my LE became much much easier to control. So that makes me hopeful.

What most scares me is the stress and sleeplessness of motherhood. I'm hoping that this doesn't trigger me back into bad habits, like poor eating and depression.

Any insight from moms with LE, and from the professionals on this list, is greatly appreciated!

Yael

[Adia]

I just wanted to jot a note in hopes that all is well. I have primary LE in both feet and ankles. at the time i didn't know what it was, but the swelling started before i got pregnant with my first and as the swelling increased i did have some mild pain. nothing bad though, just uncomfortable...it was also the HOTTEST summer we had seen in 10 years. but swelling went back to "normal" after i gave birth. With my second child i had no pain, i did swell a bit more than normal. but all in all everything was good..I did a lot of walking.
good luck to you

[lymphnotesmembe]

I have primarly lymphodema, had 2 kids --actually 2 c-sections. I am fine. My feet and legs were more swollen during the pregnancy, but then it goes down and back to the way you had them before the pregancy.

[Trish]

It is great to know that you had successful pregnancies despite having primary lymphedema. Your message, and the other postings in this group should reassure young women with PLE that, "Yes, they can have a family despite facing this problem.

Thanks for sharing.

Trish :)

P.S. The Lymph Notes article on "Pregnancy and Primary lymphedema" contains some valuable health tips on this topic.

[tiggsdacat]

hello everyone,
my name is catarina and i have been diagnosed with primary lymphedema since I was hospitalized with an infection at 7yrs old. I am 25 and have been pretty successful at keeping it under control but like some of you on here I worry about what complications could occur with pregnancy. I'm lucky in that I have other family members who have or had the same condition (my great grandmother and my aunt). They all had children and quite a few (otherwise I wouldn't be here) and out of everyone only the three of us were afflicted. Now my aunt never lost her weight after the pregnancies, doesn't take care of what she eats or exercise, so her ple is raging. My great grandmother took care of herself and didn't have too many complications besides constant swelling but back then no one really knew too much on how to treat it, they thought it was just how she was. My doctors and therapist have all told me I'll be fine when I get pregnant (hopefully soon... :)....) as long as i become extra diligent. Lots of walking, massaging the leg, watch what i eat and weight gain, use my pump and stockings as much as possible, and probably planning to not be too pregnant in the summer. And obviously working really hard after the pregnancy to get the weight off and maintain my leg. Sounds like what all of you who have this conditon and had children basically did so thank you so much for sharing and giving me yet another view of how people have handled life along with ple

[Helena]

Thank you for sharing your story about PLE and Pregnancy. The article on lymph notes about pregnancy and primary lymphedema has excellent information; however, your story makes it very personal. Certainly doesn't leave any doubt about the condition being inherited. If you are worried about it, you might consider have genetic testing done.

Helena

[cheerlee2121]

So I am going through pregnancy for the first time and I have had lymphedema for 5 years now. I am getting more swelling in my pelvic and genital area, which is really painful. If I work out, by the end of the day I am completely swollen and in burning pain. Any sugestions? Or has anyone experienced this?

[ProudParents]

There is an article on Lymph Notes, written by a Lymphedema therapist, titled "PREGNANCY AND PRIMARY LYMPHEDEMA that has a lot of helpful information. Reading this article can help you with many questions -- and hopefully your OB-GYN is knowledgeable lymphedema.

I hope the balance of your pregnancy goes well and you will be a happy Mom with no problems larger than deciding what to name your healthy baby! :)