Lymphoedema and pregnancy?

[Kelmisty]

Can anyone advise on the good and bad sides of their experiences of suffering with Lymphoedema whilst pregnant?

I'm not desperate to have children yet, but I don't see a future without them. So want to be totally prepared!

[Louisa13]

The only thing I would say is make SURE you wear correct compression after the birth even though you will have other things on your mind.

I had a c section and couldn't pull up compression plus my maternity ward wasn't interested in me wearing it so I didn't for over a week. Then night feeds and getting up and walking round with no support plus managing pregnancy weight gain left my primary lymph. in a worse state than it had ever been.

At the time my baby was the most important thing - we went through a lot to have him and I don't regret a moment BUT just make sure you manage your condition after as well as during as I found obstetricians and midwives were simply not interested.

I have fibrosis now that won't shift which is infuriating but I still run every day, ride my horse and generally don't allow it to affect me. Just be aware really.

[Chetanna00]

What a coincidence, I asked my MLD therapist this same question yesterday and was just about to come on here and poll some responses

I am similar to you in that I don't have kids yet but would like some in the future and worry about how to manage my lymphoedema when I am pregnant.

She told me that in her experience, she has seen the increase in hormones from the pregnancy have different effects on women. On some women who she treated when they became pregnant, they were able to drop their MLD sessions from monthly to every 3 months or so because amazingly the hormones made their lymphoedema better and they experienced very little swelling and she said in some others there was the other extreme where it got a whole lot worse but some months would be worse than others and other months there would be very little swelling whatsoever. The cases she was telling me about are a mixture of and secondary lymphoedema candidates.

Her only advice was that you don't know how your body will react until you actually do get pregnant ( which Im sure you will notice by the varying responses you may get on this post) and the best thing to do is just eat right and stay active which most doctors will tell pregnant women to do anyway

I'm also very interested to see how people experience lymphoedema during their pregnancy so thank you so much Kelmistry for asking question!

[ninewells]

Hi Kelmisty,

I myself have not experienced this, I have Lymphoedema and I have had a child, but at the time nobody had linked my conditions, but it was over 20 years ago, research then is not like today.

I have always apportioned my large thighs on weight gain, even although my body was tiny.

.

I have since read a few things along the way. I am sure you to will have read both good and bad,

Dr Peter Mortimer has written his findings that he studied over a period of time with 12 different ladies; this can be found on line if you just type in Pregnancy and Lympoedema.on google search.

I have cut and pasted a blog I read of a young lady who is detailing her trimesters as they occur; I hope you enjoy her story;

Blog;Lymph Girl Pregnant

Pregnant with Lymphedema;

I'm pregnant! Yay!! I'm at the end of my first trimester and have had no serious issues with my legs as of yet, but being pregnant does not make the lymphedema better. In fact, it can make it worse. Legs will swell with pregnancy alone, but add lymphedema to the mix and watch out! I try to wear my garments, those tight, very tight, compression garments that will help with the swelling. I try to wear them on a regular basis, but sometimes it is hard to put them on. If I'm not feeling well, the thought of struggling to put them on is not something I want to think about. With that said, I barely wore them in this first trimester. I was having all day morning sickness and couldn't really leave the couch because of it. At least I had my legs up all day, which helps slightly. When I did get them on, my legs felt good, that is until mid-day when my legs felt so restricted because of the swelling and I wanted to chop them off.

I've done some research about those women out there who have lymphedema and are or were pregnant. Not much to be found, just little things that don't really give too much information. There is this one article on the website LymphNotes that explains a little bit of what needs to be done when you are pregnant and have lymphedema. Click here to read the article. For the most part, I should be wearing my compression garments everyday, keeping my weight under control (don't gain over the recommended amount) throughout the pregnancy, and doing manual lymph drainage everyday. Duh. Things I already knew.

Now, since lymphedema is a hereditary disease, will I pass this on to our baby? I have done some research on this as well. What I've found was that I have a 50% chance of passing this gene on to our child. Hopefully lymphedema stops with me, but anything is possible. I've read a lot of stories of women with primary lymphedema who have children and none of them have developed it. So there is hope for our little one.

I hope this has helped and not frightened you to death, But as most people have said already, sorry to be repeating, we are all very different and our bodies will not react in the same way, but with the care we have now, i am sure you will have plenty people looking after you when it does happen.

Looking forward to reading your story when it does.

Ninewells x

[LymphSuppNetwork Partner LSN]

Hi kelmisty

There is an interesting article on the LSN website about lymphoedema and pregnancy

lymphoedema.org/News/Story7... copy and paste the link to your browser bar and it should take you straight there

[KMDB]

Hi Louisa - interested to hear about your riding? Do you have big difference between legs and is your riding affected in any way. In just trying to get back into riding now m my wee boy is two and more time but it's difficult to adjust to being uneven. I am hoping my horses will not be too affected by it.

In answer to the pregnancy question my lymphedema came on at 6 weeks to go because of may Thurner - iliac vein compression. If I were to have any more I would wear compression all way through obviously and keep active but I did last time - I'm not sure you know until you are pregnant - I never could have predicted it. Luke is fab well worth it