They want to know if their lymphedema will worsen as a result of pregnancy; if they have hereditary lymphedema, can they have a baby and can they pass it on to their children.
While lymphedema can increase your risk of some complications and while you may have to take extra steps to stay healthy, the good news is that you can have a baby, that most women who have lymphedema do not experience a worsening of their lymhpedema.
As of this update of Jan. 8, 2011, we continue to have good news of woman who have lymphedema who become pregnant. Most report little or very minor problems, and those who report extra swelling during pregnancy continue to report it generally goes back down.
As you read the following posts, you will find that most have not passed it on. My own grandmother who had primary lymphedema had nin children and only one of them had lymphedema. In fact, remember, I am just a layperson, but from my own observations and from the experience of so many many mothers who have lymphedema I absolutely challenge the statistic that if you have primary lymphedema you have a 50% chance of pasing it on. There is no evidence or clinical studies that I know of to substantiate that claim.
See also: Arm and Leg Swelling In a Baby
Here are some tips that I believe will greatly help during your pregnancy.
A good balance and nutritionl diet is an absolute must, whether or not you have lymphedema. It may be even more important for those with LE.
It is a well established fact that exercise is necessary to be healthy. The same holds true for keeping in shape during pregnancy.
The idea is not to simply stop exercising because you are pregnant and have lymphedema, but rather to adjust the type of exercises you do. Take a look at our page on exercises for some good ideas and programs on low impact, less strenuous types of exercises.
See our other exercise pages to:
Because excess weight complicate lymphedema, you’ll want to do all you can to avoid gaining weight that would be out of the normal range for your pregnancy. With lymphedema, you can suddently gain weight simply from the fluid accumulation. Should you experience a sudden weight gain, be sure to let your doctor know.
See our page on Diets, Nutrition and Weight: The Lymphedema Diet
While skin care is critical all the time for lymphedema, it becomes even more important during pregnancy to help avoid possible infections and to help your skin avoid any possible complications.
You’ll want to also continue your program of healthy skin care for lymphedema patients in general.
Continue your daily bandaging routine. This also can be a great help in control any possible increased swelling.
Pneumatic Compression Pumps
Because of the ocumented possibilities of genital lymphedema,I oppose the use of these devices for leg lymphedema and feel even stronger about it during pregnancy.
There is no documented reason why you should not be able to continue wearing your compression garments, especially during the early phase of your pregnancy. However, be sure to check with you doctor and your lymphedema therapist. Obviously, this is going to be difficult, if not impossible during the later stages of your pregnancy,, so you may have to make adaptations.
An alternative to the full waist high garment would be a thigh high. This will help the legs. .
Self lymphatic massage can be a great help in continuing to manage your lymphedema and in helping keep the swelling down.
Manual Lymph Drainage
I urge you to continue this if you are already doing so and if you are not to seriously think about seeing a certified lymphedema therapist to designate a treatment program in conjuntion with your pregnancy. In researching items for this update, I notice many site now talk about having a “massage” during pregnancy and how it helps your lymphatics. Please understand that the masage therapy for helping lymphedema, whether pregnant or not is very different then a standard massage. Please only consult a certified lymphedema therapist for this specific lymphatic massage.
As your pregnancy progresses you will find that you tire more quickly Be kind to yourself and allow time for extra rest. This may also be necessary should you have a significant amount of increased swelling.
To remain as healthy as possible you'll need to have an understanding of the possible complications of pregnancy and of lymphedema. Here are a couple pages of information that should help.
Preclampsia, previously known as toxemia seems to be the biggest risk during pregnancy. Infact, it is estimate that as many as 14% of pregnancies involve preeclampsia. It can happen during the second half of pregnancy (20th week) or in the third trimester.
This condition is characterized by a sudden and/or rapid increase in swelling, blood pressure, increased protein in your urine. Other symptoms include upper abdominal pain, usually under the ribs on the right side, dizziness, changes in vision, including temporary loss of vision, blurred vision or light sensitivity, severe headaches, decreased urine output.
This also seems to be the number one problem experienced by those with lymphedema.
Hypertension is one of the most common complications of pregnancy so you will want to familiarize yourself with this possible complication. It is estimate that hypertension complicates aproximately 3 - 5% of pregnancies.
Related high blood pressure disorders during pregnancy include:
Gestational hypertension. Women with gestational hypertension have high blood pressure, but no excess protein in their urine. Some women with gestational hypertension eventually develop preeclampsia.
Chronic hypertension. Chronic hypertension is high blood pressure that appears before 20 weeks of pregnancy or lasts more than 12 weeks after delivery. Often, chronic hypertension was present — but not detected — before pregnancy.
Preeclampsia superimposed on chronic hypertension. This term describes women who have chronic high blood pressure before pregnancy and then develop worsening high blood pressure and protein in the urine during pregnancy.
Having lymphedema, whether primary or secondary, does not automatically mean you are more susceptible to this condition.
This is a type of diabetes that some women develop during pregnancy. Between 2 and 7 percent of expectant mothers develop this condition, making it one of the most common health problems of pregnancy.
Lymphedema patients are already at a greater risk of infectons due to the immunocompromised condition of the lymphedema leg, with pregnancy and the effects on the immune system you will want to keep an eye on this and familiarize yourself with possible infections, what to look for, how to prevent them and how to treat them.
Swollen Lymph Nodes During Pregnancy
Many women report having swollen nodes (non-painful), especially around the arm pits areas and upper chest areas. According to the doctors, this is not totally uncommon and is related to the changes in the body, especially in producing milk. Any time you experience swollen nodes, it should be reported immediately to the doctor. However, if the nodes are painless, you are not running a fever or showing other symptoms of an illness, rest assured, it doesn't mean terrible things are happening either to your overall body, you lymph system or especially, to the baby.
The lymphatic vessels of the pregnant woman’s pelvis become enlarged in response to the increased amount of tissue fluid in the engorged pelvic organs. As the uterus grows in size, it presses on these channels, causing impairment of the lymphatic drainage from the woman’s legs, with resultant swelling and distention of her feet and legs. Although some fluid almost invariably collects in the feet, ankles, and legs near the time of delivery, sudden swelling of the feet and legs or a notable increase in swelling may be an early signal of impending preeclampsia, a serious disorder of pregnancy that is discussed below. Generalized swelling—i.e., swelling of the hands, face, and other parts of the body—is a cause for serious concern.
From: Encyclopaedia Brittanica Online
July 9, 2007
Hi ann. I'm 29 with a 2 yr old and have had secondary LE for 4 yrs now. My drs were concerned with clotting during pregnancy in my affected leg. I'm happy to say that my pregnancy went great with very little issues. I made sure to rest off of my feet as much as possible. I put a stool under my desk at work to keep my feet up. I also did my low impact exercises to help my leg circulation. the hardest part for me was once I was in the hospital I took my stocking off because of the over night stay and with all the fluid they were pumping in me it made the swelling worse in my leg. I couldn't get my stocking on the next day so lucky for me I was in bed all day and not on my feet anyway. I would suggest you wear your stockings, do your massage as often as you can and you'll most likely be fine! good luck!!
July 10, 2007
I have two daughters and did not have any problems with my LE while pregnant. (I have primary in both legs). If you have primary LE you might want to have genetic counseling. My youngest daughter has developed LE i her legs (she's 17) and I had no idea when I was having children that my LE could be inherited. I can't imagine doing anything differently, though I wish that I could have spared her.
August 1, 2005
Hi ya Nikkid
I am sure if i had known i had lymph when i had my children i would have asked the same question.
I can tell you I did have lymph not diagnosed I gained weight hun my ankles swelled and feet got bigger, had a lot of what they said was fluid retention.
They were worried i had toximia because of my ankles (it was the lymph I didn’t know there was lymph at the time).
I had good births and I worked hard with the “fluid as they called it and did reduce took a while couple of years never got back to my original size. I got pregnant again more or less the same type of pregnancy and I had my daughter third and last not a problem except for the weight and swelling, thank God non show signs of lymph but I was terrible conscious of their weight
If i had known about the lymph I would still have had my children life is about living and loving the lymph and the difficulties we all face are secondary to living our lives
huggggggggg silks xxxxxxxxxxxxxxxxxxxxxx
February 20, 2004
During my first pregnancy at 19 years old my hands started to swell. I saw a doctor who said the swelling wasn't that serious, but be sure to take a sit down job. I was working in retail at the time and often as a cashier which standing in one spot all day makes the condition worse!
When I had my 1st child at the age of 20 and was recovering from a c-section the doctors were concerned with my swollen leg that I might get a blood clot in it so I had to wear compression hose during my 2 week ordeal/recovery.
Several months ago one of our readers asked whether pregnancy caused lymphedema to get worse. I reviewed the published literature and, as is too often the case, found very little published information. In addition, what information was available was based on very limited numbers of patients. To gain additional understanding about pregnancy and lymphedema, I created a pregnancy survey for our readers. 13 women have responded to that survey and I am including a summary of their responses and insights.
12 of the 13 women had primary lymphedema. The average age of onset was 10 years of age and the range was from 1 to 16 years of age. 1 patient had breast cancer and a mastectomy and developed lymphedema during her first pregnancy 9 years later.
Of the 12 patients with primary lymphedema, 9 of 12 (75%) had the onset of lymphedema or developed worse lymphedema during their pregnancy. Most of these women found that the lymphedema got worse in the final months of their pregnancy. 2 women reported having persistent lymphedema after delivery.
8 women reported second pregnancies and 5 of the 8 (63%) had worsening of their lymphedema and all reported that the lymphedema was worse with the second pregnancy. All 3 women who did not report worsening of their lymphedema had miscarriages that occurred between 3 and 5 months of gestation.
4 women reported having third pregnancies and 3 of the 4 had worsening lymphedema with the pregnancy and all reported that the lymphedema became progressively worse with each pregnancy. The remaining woman had a miscarriage.
One woman reported a 4th pregnancy and had worsening lymphedema with the 4th pregnancy but that the lymphedema got better after the delivery of her child.
The one respondent with secondary lymphedema commented that she had been free of lymphedema for 9 years after her mastectomy but developed lymphedema in her hand and forearm during her first pregnancy.
The only women not reporting worsening of their lymphedema during their second and subsequent pregnancies had miscarriages. Miscarriages occur in about 10% of pregnancies so it is notable that so many of the women responding to this survey reported miscarriages. Please keep in mind that a small number of women responded to this survey and any results represent the bias of any small sample. However, it is also possible that the incidence of miscarriages is higher than the expected in women with lymphedema. I will continue to report on additional findings of this survey as we get more information.
Many of the comments made by the women provided interesting insight into the problem of lymphedema during pregnancy so I have included a sample of these comments below.
“I am currently in my eighth month of pregnancy and have doubled the size of my left leg. Prior to the pregnancy, I had not swelling in my right leg. Now in my eighth month of pregnancy, my right leg is swelling. I am hoping the swelling in my right leg will go away after the baby is born.”
“By 11-12 weeks of pregnancy, my leg was fuller and growing uncomfortable. I was able to continue working full time as a nurse until the 20th week of pregnancy. At that point my leg was heavy and uncomfortable. I was comfortable, however, if I was lying down. During the pregnancy, I gained over 60 lbs., I was very congested in my entire body. I remember having to put my left leg and foot under cold water to reduce the discomfort. I was unable to wear any shoes other than ballet slippers, and could only do minimal walking around the house. After my daughter was born, one to two weeks after her deliver, my leg returned to essentially a pre-pregnancy baseline. My leg improved as I took off the weight gain of fat that naturally occurs with pregnancy. ”
“I am currently at the last stage of my third pregnancy, and the swelling is once again more pronounced than in previous months. I tend to be lazier about the stockings this time, so my swelling could probably be better.”
“Thank you for posting this survey, I would have enjoyed having some preview of the effects of childbirth on lymphedema. Overall, pregnancy was a temporary setback, which is an important consideration. However, I was still uncertain enough not to attempt my good luck with a second pregnancy. Who knows what the outcome would be, especially after age 35. My personal experience with this condition has led me to believe that insect bites are far worse for my leg. If I get bites on my left leg, my leg gets worse, and doesn't want to return to baseline. It's as if I “loose ground” whenever this happens. The increase with pregnancy, although very substantial, was reversible. It seemed to me to be in indication of lymphatic system overload, rather than tissue scaring or damage. I did notice that as my weight returned to normal, my leg kept improving.”
Tony Reid MD Ph.D.
Peninsula Medical, Dr. Reid's Corner
Last year I presented data on the relationship between pregnancy and lymphedema. Since that time more women have responded to the survey and I presented the update of that survey at the Lymphedema conference held in Dallas, Texas sponsored by Healthtronix.
This survey was prompted by several questions that were sent to me asking whether pregnancy worsens lymphedema. For example, a woman had primary lymphedema and was considering an abortion because she was very fearful of her lymphedema getting worse. She already had a bad case of lymphedema and felt that if it got much worse she would no be able to function. There was no published data to help answer these questions and so I posted a survey on our web site to help find some answers to this question.
First, I want to say that the results of the survey are limited by a number of factors. The number of women answering this survey, while growing, is still relatively small. In addition, this is not a random sample of all women with primary lymphedema who have had a pregnancy and effective treatment may change the outcome. This survey only documents the experience of the women who have responded. However, I appreciate the fact that these women have taken the time and effort to answer these questions and I hope that this project will continue to develop and provide additional information that is helpful to women facing this problem.
33 women responded to the survey. Of these, 26 had primary lymphedema and this survey will focus on those 26 responses. Most women with secondary lymphedema]] have it as a result of treatment for breast cancer|breast cancer. As a result, the majority of these women are past their child bearing years. In addition, the treatment, especially chemotherapy, generally causes infertility. So, most of the women who have lymphedema during their child bearing years have primary lymphedema. I will analyze the results of the women with secondary lymphedema separately. Since there are only a few responses, the data is still limited.
The average age of onset of lymphedema in this group of women with primary lymphedema was 10.7 years but the range of responses was very wide. Some women developed lymphedema at birth while others developed lymphedema in their late teens or twenties.
Of the 26 women with primary lymphedema who responded to this survey, 12 of 26 (46%) reported worsening of lymphedema with the first pregnancy. Of the 12 who had worsening of lymphedema during pregnancy, 7 reported that the lymphedema returned to baseline after delivery so that 5 of 26 (19%) reported persistent lymphedema after pregnancy. However, among the women who improved after delivery, 2 of these women subsequently had worsening of lymphedema within a year. As a result, 7 of 26 (27%) reported lymphedema that was worse following their first pregnancy. Here are several comments from these women.
“After delivery my leg went back to it's prior size before becoming pregnant. However, after 7 months my leg again became swollen and progressively got worse.”
“In my second trimester my ankles began to swell and the doctor assumed it was all normal. After the delivery of my child the swelling in my right leg / ankle went away but the swelling in my left leg continued.”
These results suggest that about half of the women with primary lymphedema experienced worsening of lymphedema during their pregnancy. Among the women who reported that their lymphedema worsened with pregnancy, about half of these women reported improvement after delivery of the baby. As a result about 27% (7/26), of the women with primary lymphedema experienced persistent worsening of the lymphedema with pregnancy.
Some of these women had additional pregnancies and I will present the analysis of the results in the subsequent edition of eNews.
Tony Reid MD, Ph.D
Peninsula Medical, Dr. Reid's Corner
Q. I had a lumpectomy and node dissection 8-1/2 years ago and developed LE within a year of my surgery. I am very diligent in my self-care, i.e., self-MLD, compression sleeve every day, bandaging every night, professional MLD once a year. One question that no one has been able to answer for me is how pregnancy affects LE. One doctor told me that I shouldn't wear a sleeve OR bandage during pregnancy, while MLD therapists tell me I shouldn't alter my routine at all. (FYI: I m not pregnant right now.) I d really like to understand what will happen: can the LE become worse, and how best to continue treatment during pregnancy? Thanks!
A. There is no documented scientific evidence anywhere stating that compression garments should not be worn during pregnancy, or that MLD is contraindicated during pregnancy. Of course, modifications in the abdominal breathing/abdominal clearance would be made during pregnancy. In fact, for lymphedema of the legs, it is essential to maintain compression during pregnancy, to avoid worsening of the swelling from abdominal pressure on the great veins. There is an increase in total blood volume during pregnancy to support the fetus. This should not have a direct effect on the lymphedema in your upper extremity. My suggestion would be to continue to follow your usual lymphedema management program, including wearing your compression garments and bandaging at night if that has been your routine. I know that you are not pregnant now, but I hope that this information will allay your fears about your lymphedema worsening during pregnancy. You can safely continue to do your self-care program, perhaps with some modifications, if you do become pregnant.
A: Due to the inattention given lymphedema in the U.S., we do not have any concrete data identifying the number of people born with primary lymphedema. Here at the NLN, the number of calls we receive from young parents, concerned that their child will inherit the condition, is increasing.
We do see, and talk to, a growing number of people who have multiple generations in their family affected by primary lymphedema, and some who have none at all. However, a number of my patients with primary lymphedema from both backgrounds have had very healthy, lymphedema-free babies who, so far, have not developed the condition. So, at this point, it's very difficult to say what the odds are.
Marlys and Charles Witte, M.D.'s at the University of Arizona (Tel: 520-626-6118), are actively working with a number of families, trying to identify some genetic link and/or other correlations. Possible genetic links are also being studied in the Department of Human Genetics at the University of Pittsburgh, PA. For more info about the study, contact Kara Levinson, MS, at: 412-624-4657. Or visit their website at: http://www.pitt.edu/~genetics/lymph/lymph.htm. This research data will greatly enhance our ability to forecast a child's susceptibility.
If you do have a child with lymphedema: there is a new organization called “PLAN” (Primary Lymphedema Action Network), which focuses on families with young infants born with primary lymphedema.
A: It really depends on the overall condition of the mom. If she is healthy without any other medical problems, there should not be a problem. But it is very important that couples prepare themselves and realize the tremendous re-sponsibility. You'll need to increase your daily care, such as manual lymphatic drainage twice a day, wearing well fitted maternity panty hose (45-55 mm/hg) or, as some women do, wear an additional stocking to add compression. Avoid sodium and drink lots of fluids (water, tea, natural juices, etc). In regard to spreading to another limb - and if you are concerned, I would suggest doing a lymphoscintigraphy (contact the Witte's; see answer to question above) - a very sophisticated diagnostic tool used to visualize the lymphatics - prior to your pregnancy. Also, if you have a history of recurrent onset of lymphangitis in your leg, you will be at greater risk of recurrent infection during pregnancy as a result of increased weight/swelling and protein in the tissue. If severe enough, an infection could cause a miscarriage, so you will want to watch closely for signs and symptoms.
The best advice: use common sense and practice meticulous self-care. If you are well, there is no reason that you cannot have a healthy, happy baby.
A: Both procedures have their concerns. Any time an invasive procedure is performed on a patient with lymphedema, you want to be careful. Especially the woman who has swelling in the pelvic area and lower abdomen needs to make sure to take antibiotics just before, during and after the C-section. Vaginal delivery always has risk factors as well, especially for a woman who is in labor for many hours: usually there is more swelling in the pelvic region and leg(s) from pushing. But once the baby is born, swelling usually subsides in a matter of days.
A: Not only is it safe, but it's extremely important to continue therapy. Your goal is to keep the leg(s) in its optimum condition. Do not forget to use lotion to keep the skin soft and supple. See a podiatrist educated in lymphedema just to make sure that you do not have any possible risk factors such as fungi, Athletes foot, callouses, etc., which could lead into infection. VERY IMPORTANT: Be sure to wear well-fitted high compression maternity stockings.
Additional tips for pregnancy: Educate your GYN and other involved doctors about lymphedema. Get plenty of rest, avoid stress when you can, follow the 18 STEPS TO PREVENTION, and if possible, shoot for winter time for your last trimester, when it's cool. Happy Pregnancy!
[Article in French] Brunner U, Lachat M.
Departement Chirurgie, Hopital Universitaire, Zurich.
From a retrospective analysis of 15 female patients, it appears that primary lymphedema, reversible at first, tends to become irreversible during successive pregnancies. A remission takes place following the first and second pregnancy, and during a third pregnancy, an irreversible stage is reached.
I was always taught that pregnancy was an indication FOR Manual Lymphatic Drainage and that is was great to have it during pregnancy, provided there were no other contra-indications present (or complications to be considered). As you are having it regularly anyway, it should not be a 'shock to the system'.
Some practitioners might choose to avoid the first tri-mester (but this is more to do with avoiding being associated should anything go amiss in the most vulnerable first three months, I think - although, of course, some people don't actually know they are pregnant until well into the three months anyway).
In fact, anything that you can do (safely) - eg., wearing hosiery and having MLD during pregnancy that will help to keep oedema down has to be a good thing. The body naturally tends to retain fluid during pregnancy - many women experience swollen ankles, carpal tunnel syndrome etc as a natural complication of the extra fluid carried. It will likely make any lymphoedema a little more troublesome, so keeping hosiery on and staying with MLD could help to keep the balance.
If you are able, walking in water would be excellent as it is good for lymphoedema anyway and exercising in water while pregnant is fantastic. The water needs to be about the height of your boobs - don't overdo it, stop before your muscles get fatigued and wear some old, worn out compression hosiery while in the pool for an even greater effect.
The action of walking activates the calf muscles and the lymphatic system of the legs, the induced deeper breathing encourages lymphatic return and the water acts like an all over MLD massage, supporting the skin. You may find that you need to leave the pool to wee quite often!
It is important though, to stop before your muscles get tired. This avoids bringing too much extra circulation to the legs as that could lead to more oedema.
Your regular MLD practitioner would be the person to talk to - would they be happy?
From ULKymph Discussion Board - Author is Anne - who not only has lymphedema but is a Vodder Therapist as well ……..
Another members experience: I have had the L/O symptoms in both my lower legs since I was 12 years old although I think I was born with it.
Five years ago I had my beautiful daughter Ellie and although it was uncomfortable during the last few months as I was carrying extra weight my legs did not really suffer.
I am lucky in that my L/O is pretty mild compared to some sufferers, but I just made sure that at the end of the day (I was commuting to London for work) and whenever they started to ache, I would put my feet up and rest. I also made sure I wore my support stockings (Jobst I find are the best) all the time even during the summer when it was warm.
I dont know whether I have passed the gene onto her and I hope to God that I havent. I just try not to think about it but I would not be without her for the world.
I do notice that my legs do swell up more quickly than say they did 10 years ago but I dont believe that has anything to do with me being a mum and so long as you look after yourself and let your husband/partner spoil you rotten during those 9 months I am sure you will be fine.
Its worth talking to your doctor/specialist though to get a qualified opinion.
By Professor Peter Mortimer, LSN Chief Medical Advisor and Dr Sahar Mansour, Consultant Clinical Geneticist, St. George's Hospital, London
The cardiovascular system undergoes considerable changes during pregnancy with an increase in blood output from the heart by at least 50%. Blood vessels generally enlarge creating a relatively 'under filled' circulation and so to compensate, the kidneys try and conserve salt and water. This leads to fluid retention amounting to some 6-8 litres in the body. The dilution of theplasma proteins encourages fluid to leak from the blood vessels into the tissues. A fall in the threshold of the hormone that encourages a fluid diuresis maintains a fluid retention state. By the end of the pregnancy, 80% of healthy women will have some degree of oedema.
Very little is known about what happens to the lymphatic system during pregnancy. If blood vessels enlarge, i.e. relax, then by implication, lymphatic vessels are likely to do the same, in which case they will not be as efficient at draining fluid. Normally there is sufficient reserve in lymphatic transport so that any increases in tissue fluid will be compensated for by increases in lymph drainage. If the lymph drainage is already working close to capacity because of a genetic or constitutional weakness in the lymphatic system (but not so severe as to have produced lymphoedema before), then the extra demands of pregnancy may be all that is needed to manifest swelling for the first time.
Other factors that potentially increase the risk of oedema during pregnancy are weight gain and a reduction in exercise levels.While fluid retention will increase weight, so will obesity. Lean women who eat to appetite gain as much as 1kg in the first 10 weeks and women with a tendency to obesity will gain much more. Such weight gain will probably have an adverse effect on lymph drainage, particularly in the legs. It is difficult to maintain exercise levels during pregnancy because of tiredness and the awkwardness the pregnancy brings to walking. Exercise is, of course, crucial for good lymph drainage in the legs.
Like other blood vessels, the veins in the leg tend to enlarge during pregnancy. Varicose veins often develop, which will result in a further filtration of fluid from the blood into the tissues of the leg and so make oedema worse.
Pre-eclampsia (used to be called toxaemia of pregnancy) is specific to pregnancy and manifests with hypertension (raised blood pressure), a leak of protein by the kidney, and oedema. The cause is not known, but the syndrome of pre-eclampsia usually develops from the mid-point in the pregnancy (20 weeks onwards), and resolves completely after delivery. Generalised oedema is an inconsistent feature. It may develop suddenly and is associated with accelerated weight gain (due to fluid retention). Although the ankles and feet will be the commonest site for the swelling due to the effects of gravity, oedema can occur anywhere in the body including the chest and the abdomen (ascites is free fluid in the abdominal cavity). The generalised nature of the oedema would suggest that the fault lies with the blood vessels leaking more fluid into the tissues rather than any failure of the lymphatic system, but nobody knows. As mentioned earlier, any such increase in tissue fluid will inevitably demand more of the lymphatic vessels to drain the fluid and any failure to do so will increase the oedema further.
Diuretics are best avoided in pregnancy because they result in an even greater 'under fill' of the blood circulation. Drugs called 'calcium channel blocking agents' are recommended for the raised blood pressure, but do tend to interfere with the working of lymphatic vessels and may increase ankle oedema.
A major concern of any young female patient with lymphoedema is “What will happen to my lymphoedema if I become pregnant?” The answer is that it is likely to get worse because of the fluid retention, but it should be manageable and fully recover once the baby is born. The extra bodily fluid retained during the pregnancy will include the part of the body affected by the lymphoedema; so extra effort will be required to ensure that this extra fluid is drained by the local lymphatic system that is already failing. So if a leg is affected by lymphoedema, for example, then extra measures to control the swelling may be necessary. These measures may include longer periods of rest with the leg elevated, manual lymphatic drainage, or an additional compression garment. Not every woman with lymphoedema suffers any exacerbation of swelling during pregnancy. In many, the lymphoedema remains unaffected, and so what is described here is the worst case scenario.
There is no reason to believe pregnancy harms the lymphatic system, and so a full recovery would be expected following delivery. Nevertheless, as with returning to one's original weight and bodily shape, recovery of the lymphoedematous limb may take a bit of time and effort. Increasing levels of exercise and dieting may be necessary.
Primary lymphoedema is due to an underlying abnormality in the lymphatics. Although the swelling may not be present until later in life, the abnormality is probably present at birth. It is now recognised that there are some causes of primary lymphoedema that are inherited. Therefore a woman (or man) with primary lymphoedema may have a child with the same condition.
The best indicator that there is a genetic cause of lymphoedema is the presence of other affected individuals in the family. The commonest way that primary lymphoedema is inherited is from parent to child. This mode of inheritance is called autosomal dominant inheritance. There are two copies of most genes. An autosomal dominant condition is due to an alteration, or 'spelling mistake', in one of the copies. The baby can inherit either the affected gene or the unaffected gene, so the risk to the offspring of inheriting an autosomal dominant condition is 1 in 2, or 50%. Some of the genetic causes of primary lymphoedema are well recognised and are described in more detail below.
Milroy first described a large family with lymphoedema presenting at birth in 1892. It was clear from the family history that this condition was autosomal dominant, and therefore being transmitted from parent to child.Milroy's disease presents predominantly at birth with swelling of the lower limbs, usually the feet. The swelling can increase, or improve, or remain stable. Boys sometimes have extra fluid in the scrotum, but this rarely causes any problems. Milroy's disease is not usually associated with any other abnormalities.Most of the carriers of this condition have some swelling of the lower limbs, but it is recognised that some carriers of the condition are not affected, but may have affected offspring. The lymphoedema in Milroy's disease is due to a lack of lymphatic channels in the lower limbs (hypoplasia or aplasia). The gene for this condition, Vascular Endothelial Growth Factor Receptor 3 (VEGFR3) was identified only recently. This gene is important in the development of the lymphatics of the baby.
This condition is another autosomal dominant cause of primary lymphoedema. However, the lymphoedema usually presents in late childhood or puberty. The age of onset and severity of the swelling varies even within families. The swelling is usually associated with the presence of extra eyelashes on the inner side of the eyelids.
Although the swelling presents later, it is still due to an underlying abnormality of the lymphatic channels. Lymph scans in affected individuals have shown that there are a normal or excess number of lymphatic channels with delayed uptake of lymph in the inguinal lymph nodes, suggesting an abnormality in the function of the lymphatic channels. The mechanism is still unknown. This condition is sometimes associated with other congenital abnormalities. About one third of affected individuals have drooping of the eyelid (ptosis) which occasionally requires surgical correction. There is a slightly increased risk of heart disease at birth (8%). This is not usually severe, but may require surgical repair. A few affected individuals also have a cleft palate (3%).
The gene for this condition has been identified; it is a very small gene called FOXC2. It clearly has a role in the development of the lymphatics and eye, but very little is understood about its function.
The risk of inheriting lymphoedema for those types where the gene is known and in which a family history exists, is approximately 50%, i.e. 1 in every 2 births. There are, of course, many other causes of primary lymphoedema.Many of these may be genetic but not inherited. Often the underlying cause is not known. The baby is at an increased risk of inheriting the lymphoedema if any of the following are present:
The baby is at low risk of inheriting lymphoedema if:
Even if a baby inherits the gene for lymphoedema, it does not mean to say he or she will be as severely affected as the parent. Indeed, the lymphoedema may be very mild despite a severely affected parent.
Ultrasound examinations performed during the pregnancy may pick up oedema in a foot or around the back of the neck, both signs that the child may be affected. In the majority of cases, no abnormalities will be observed, and it may only be after birth or sometime later in life that the lymphoedema becomes obvious. In the future it may be possible to test the baby for the offending gene during the pregnancy, but this is not possible at present.
Prevention of Lymphoedema
In the years to come, we hope it will be possible to correct the faulty gene before the baby is born so that the lymphoedema can be reversed. This has been achieved in animals, but not yet in humans. Insertion of the normal gene instead of the faulty one is called gene therapy. It may be possible to do this in adults already affected by lymphoedema. There is hope!
Lipoedema and Pregnancy
Pregnancy may trigger or exacerbate lipedema and worsen the lymphoedema component of lipoedema.
Lipoedema is a condition that results in swelling of the hips, thighs or legs in females. Fluid does contribute to the swelling, but the main component is fat, but in a way different from obesity. In addition to swelling, which gives rise to a 'bottom heavy' or 'chunky, shapeless legs' appearance, symptoms of tissue tenderness and easy bruising are commonplace. Lipoedema tends to develop or deteriorate at times of hormonal change, e.g. puberty, pregnancy and menopause. The condition may not be apparent during the pregnancy because of all the other changes that take place. Following the pregnancy, however, weight loss may prove difficult from the lower half of the body (bottom, thighs and legs). Dieting tends to result in fat loss from face, neck and chest, but not the legs. Treatment is difficult, but a vigorous exercise regimen and healthy eating are recommended. The fluid component of lipoedema appears to be related to poor lymph drainage from the areas of fat deposition. As the fluid increases, so more noticeable oedema develops, particularly in the feet. This is called lipoedemalymphoedema syndrome (lipolymphoedema). Pregnancy may therefore trigger or exacerbate lipoedema.
In summary, in female patients with lymphoedema, pregnancy may create additional concerns with regard to adverse effects on the swelling and the fear of passing on the condition to any offspring. In most cases these concerns are unfounded. Any increase in swelling can usually be managed satisfactorily with the help of a lymphoedema therapist, with a full return to normal once the baby is born. In many individuals the lymphoedema will not change. In the event of a child inheriting lymphoedema, it does not follow that their condition will be the same or worse than that of the parent. The recent upsurge in our knowledge of the genes and proteins involved in lymphatic growth
Subjective assessment of pregnancy impact on primary lower limb lymphedema. Feb. 2010
Vignes S, Arrault M, Porcher R.
Department of Lymphology, Centre National de Référence des Maladies Vasculaires Rares, Hôpital Cognacq-Jay, 15 rue Eugène Millon, Paris, France. email@example.com
To analyze subjective influence of pregnancy on lower limb lymphedema.
Cross-sectional study on 49 affected women was conducted in a single lymphology department between January 2002 and December 2006. All women were asked whether their lymphedema had worsened during pregnancy.
Mean age at lymphedema onset was 17 years, with no familial history of lymphedema. Lymphedema was unilateral for 30 women and bilateral for 19. Median age at the first delivery was 28 years. Eighteen women had only 1 pregnancy, 23 women had only 2, and 8 women had 3. For the first pregnancy, birth weight was 3.4 kg. Subjective lymphedema worsening was reported by 5 women after the first pregnancy compared to 44 women without worsening (P = .006) and after 10 (11%) of the 88 pregnancies (1 twin birth) involving 9 women. During the median 18 years since the first pregnancy, only a 14-year-old boy has developed bilateral lymphedema.
Pregnancy did not significantly exacerbate primary lower limb lymphedema.
Can UA ultrasound findings be affected by lymphedema in early pregnancy?
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Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.
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All About Lymphoedema - Australia
Updated Jan. 18, 2012