When living with a chronic medical condition, we learn to expect the need for special precautions in almost every situation; whether it’s traveling by plane, taking a dip in the hot tub, or getting a tattoo, we have to be mindful of how our bodies will be affected. Our lymphatic systems are compromised, after all, so it makes sense that we need to make a couple compromises and adjustments as well in order to stay healthy.
But what should you expect from your lymphedema when you’re expecting? I’ve gotten a lot of emails from readers with questions about pregnancy and lymphedema: will their lymphedema worsen during pregnancy? Will any increased swelling be permanent? What are the odds of passing on lymphedema to their baby? Pregnant women are prone to swelling in their legs and feet even without a preexisting condition like lymphedema, so how can a lymphie mama-to-be keep her swelling under control??
I can’t speak from experience so I don’t readily have answers to these questions—in fact, I’ve wondered these same things myself when thinking about whether or not I’d like a family of my own someday. It’s completely valid to have these sorts of fears and concerns, but don’t let them hold you hostage! Doing some research and talking to healthcare professionals are incredibly empowering and effective ways to figure out your treatment options and what you can expect during pregnancy.
I did a little research and compiled a general list of some things you can do to help keep your lymphedema under control during pregnancy. Because our community thrives on sharing our stories with one another, you are encouraged to share your own tips, experiences, and questions in the comments section below!
Managing Lymphedema During Pregnancy
- Check in with your lymphedema therapist. First and foremost, schedule an appointment with your lymphedema therapist to get their professional opinion on how your lymphedema will be affected by the physical changes and stresses of pregnancy, and to discuss any recommended changes to your treatment and self-care routines. Be sure to establish communication between your therapist and your obstetrician, too; it will be essential that they work together on some level so that you are able to monitor not only your baby’s health, but also your own!
- Recruit some help. As your belly gets bigger you may have some difficulty reaching your legs and feet, and your self-care routine can become more of a challenge to do on your own. Whether it’s performing manual lymph drainage or donning your compression garments, don’t be afraid to ask for help! In fact, it’s recommended to train your partner or another family member in lymphedema care early on in your pregnancy, so they’ll be prepared to help you as you get further along.
- Keep up with your compression. Unless your doctor instructs otherwise, maintain your compression routine throughout your pregnancy to help control your swelling. Be sure to check with your therapist on which level of compression is appropriate as your pregnancy progresses; because you may need to modify your compression a bit in order to accommodate your changing body, bandaging may be a better option as bandages allow for adjustments in size and amount of compression. (This is definitely a place where your helper will come in handy!)
- Perform manual lymph drainage massages. Doing these drainage massages on a regular basis are beneficial in promoting lymph flow, although you may want to check in with your lymphedema therapist about any modifications to your abdominal breathing and massage techniques as you get further along in your pregnancy.
- Practice gentle exercises. Get your body moving through exercises such as walking, gentle yoga, or water exercises. As always, check with your doctor beforehand for clearance before beginning any sort of exercise routine, and be mindful of your physical limitations.
- Stay elevated. Take some time to elevate your legs, even if that means going on bed rest. With your feet and legs elevated, gravity can do its thing and really help in reducing your swelling!
- Be extra cautious about infections. Cellulitis infections are always a danger when living with lymphedema, but when you’re pregnant, an untreated infection creates a threat to both you and your baby. Be sure to talk about the risks of infection with your doctor as well as any danger signs to look out for, and set up a preparedness strategy with emergency antibiotics on hand—just in case!
- Keep all of your prenatal visits. It’s very important to stay consistent with your appointments so as to ensure things are progressing as they should be, for both you and your baby! Having lymphedema can create an added risk for complications to develop: the extra compression could place excess strain on your heart and other body systems and aggravate symptoms of pregnancy complications such as preeclampsia. Immediately consult your doctor should any symptoms develop, and also notify your lymphedema therapist so that any modifications to your bandaging and compression routines can be made.
- Read about the experiences of others. Doing a quick Google search will help you find message boards or blogs with posts about peoples’ experiences managing their lymphedema during pregnancy. (For example, Monique at Lymphedema Runner has written about both of her pregnancies in beautiful, honest detail.) Reading their stories can help you better understand what it’s like and what sort of things you can expect for yourself—you may even be able to reach out to them should you have any specific questions!
For more information, see LymphNotes.com’s article “Pregnancy and Primary Lymphedema.”
Everybody is different, and every case of lymphedema is a little different, too! When the time comes, the safest thing to do is to speak with a doctor who can asses your case of lymphedema and offer their professional opinion regarding your options and any potential risks. That way you can be fully prepared and have a healthy pregnancy not just for you and your baby, but for your lymphatic system, too!
Hi, happy 2016! This isn’t a pregnancy comment but I’m facing some serious surgery – re-repair of a congenital heart defect that’s come back – and was wondering if anybody had advice about managing lymphedema while in an Intensive Care Unit? (ICU)? Of course I’ll make sure nobody puts any tubes etc in that leg, but I’d appreciate other advice for what is likely to be a few days of total immobility. Thanks!
My 2 pregnancies were fine. Wore my compression everyday as always, elevated legs on a foam wedge at night, consulted a private OBGYN through the pregnancies and had massage therapy during my last pregnancy. Don’t eat for two – eat for one because any extra weight on top of the pregnancy may affect your LE. There is added pressure to leg LE with an expanding tummy, so keep off your feet as much as possible and doing prenatal yoga will help you to learn how to sit in a position that helps take the pressure off. If you’re planning a pregnancy and don’t have a clock ticking, I would highly recommend trying to fall pregnant in late spring or in summer so that your heavier months are in the cooler weather – makes a big difference.
My lymphedema started when I first became pregnant with my first child. I thought it was just regular pregnancy swelling, even though it appeared only in one leg (which was weird) and I went through my whole pregnancy undiagnosed. It was only after when the swelling didn’t go away that I was diagnosed with primary leg ebola… errr sorry lymphedema!!!! (Apparently its very rare to for lymphedema to present itself like this;…. Yay! Im special!) I didn’t manage it very well my first pregnancy because I didn’t realise the problem I had. I was told to wear compression stockings but I didn’t so much, which made some days worse than others. It was pretty bad the swelling, but I didn’t realise the damage I could be doing by not wearing the compression stockings. Anyways. My second pregnancy came around and I was really worried about my leg and how it would react. I made sure to swim every second day and this helped A LOT. I was in Australia at the time so the heat could have made the swelling worse, but I managed to keep it down with all the swimming I was doing. At around 7 months I returned to France and it was the middle of summer, I had horrific sciatica and could hardly move! So I stopped swimming and instantly my leg went CRAZY big. It was extremely hot and humid here too which didn’t help. My physiotherapist who does the MLD was away during the summer vacation so I didn’t have my massage either. So all of these elements combined was a disaster for my leg. Im still trying to get it good 5 months later. All I can say is this: SWIM, LOTS!!!!!! (regardless if you are pregnant or not), keep that lymph flowing. Its the best exercise you can do for it and while you’re pregnant. Wear the compression stockings religiously. Do the MLD as much as you can and ELEVATE. My specialist told me that it can get worse during pregnancy, but 3-6 months after giving birth all the hormones and excess liquid leaves the body and you should be back to “normal”….. Don’t be scared of pregnancy, just manage it really well, more closely and you’ll be fine.
And I definitely agree with planning to falling pregnant in the summer months so that you are heavily pregnant/ giving birth in winter months. This will eliminate a lot of your problems with heat and swelling.
Hi.. I am currently 37+3 weeks and have finally been diagnosed with pregnancy Lymphedema. I have suffered since 31 weeks with a 10cm thick fluid pocket on the underside of my tummy. Its heavy, hard, skin like orange peel, its sore, very itchy and hot! I also have a lot of swelling in my legs and feet :( physiotherapist has told me that she cant perform massage therapy because it will cause too much stress to my kidneys. I am hoping to be induced some time this week as I cant keep doing this for another at least 2 weeks :(
I’m sorry for the delayed response—how are you doing? I hope you’ve been able to find some relief with your lymphedema symptoms, as they sound really uncomfortable for you and baby :( Were you able to be induced? Has your physiotherapist been able to find other ways to alleviate the swelling? I’m sorry that I can’t offer any suggestions, but maybe someone reading through these comments may be able to offer some of their own experiences or expertise?
I hope all is well, Sammy, and best of luck!!
Currently in hospital and have started the induction process!! :) getting strong contractions.. so hopefully Baby isnt too far away.. wasnt given any other options for the swelling though they did try! I also developed a PUPPPS rash on the lymphedema on my tummy.. its been awful! Very glad to be starting the induction process and getting my little girl out :)
Omg! How exciting!! I hope all is going well and you get to meet your little girl soon :) Once she’s here, maybe you’ll be able to receive more aggressive treatment for the rash and swelling. Wishing you all the best and lots of happiness and health xx
Hi, I know it’s been some years but can you tell me if your lymphedema went away after pregnancy? I’ve developed the exact same in my pregnancy and wondering if I’ll have to live with it after.
Yoga is always a good idea, although I hadn’t thought about how it would be beneficial in this type of situation. I can see how it might be tough to experience this while you are pregnant, so I appreciate your thorough information. Something that I think is a great idea for any pregnancy is counseling. Do you know any professionals who specialize in this?
Do you mean counselors who specialize in treating pregnant patients? I don’t know of any myself (I’ve never been pregnant so I haven’t sought that out – yet!), but I definitely advocate for any person with lymphedema to seek out therapy or counseling if they can, be it with a professional or a support group. We often get so fixated on treating the physical symptoms of lymphedema that we neglect the mental and emotional ones — it’s so important to have a strong support system in place, especially when lymphedema can be such an isolating condition.
And I totally agree on the yoga – it’s always a good idea!! 😊
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Hi everyone I’m 32 years old and trying to get pregnant. I have leg lymphedema in my left leg. I’ve adjusted my diet to where I eat less meat, don’t drink soda and trying to minimize my sugar intake. I don’t currently wear compression socks I’m trying to find a therapist and Dr in my area whose more familiar with the treating my condition. IveI had leg lymphedema since 2006. Any advice or tips on what to do and don’t do would be greatly appreciated.
I’m 31, wanting to get pregnant next summer. Same as you. Left leg but I don’t even wear compression (it’s minimal swelling) but when I first got diagnosed with it in 2002 swelling was much worse so I’m afraid pregnancy will make it bad again. I don’t even see a lymph. Therapist, never did. I’m in NY, where are you?
Hi Christine, GA girl here. Mines has had me in the hospital multiple times in later years if my life. I’m doing better in regards to controlling it but it’s easily four times bigger than my right leg and goes up to my knee. How about you? What did you do to reduce the swelling? I elevate at night but I’m not sure of all the do’s and don’t scenarios