LYMPHEDEMA AND PREGNANCY
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Lymphedema and Pregnancy
Pregnancy and Lymphedema
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
found very little published information. In addition, what information
available was based on very limited numbers of patients. To gain
understanding about pregnancy and lymphedema, I created a pregnancy
our readers. 13 women have responded to that survey and I am including
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
Pregnancy and Lymphedema: Followup
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
update of that survey at the Lymphedema conference held in Dallas,
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. 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
NLN Questions and Answers
Should I wear a sleeve or bandage while pregnant?
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.
National Lymphedema Network
Q: What is the percentage of children born with or
who develop lymphedema
when the mother has primary lymphedema?
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. For more information, call Wendy Chaite: 516-625-9862.
Q: Are there concerns of permanent deterioration or
worsening of a
mother's condition if she has primary lymphedema and becomes pregnant
spreading to the other leg, additional risk of infection,
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.
Q: What are the possible complications from a C-section vs. vaginal delivery and its relation to lymphedema?
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.
Q: Is it safe to undergo Manual Lymphatic Drainage during pregnancy?
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!
National Lymphedema Network - page link no longer available
UA ultrasound findings be affected by lymphedema in early pregnancy?
Primary lymphedema and
[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.
PMID: 2626470 [PubMed - indexed for MEDLINE]
Suggestions for lymphedema and pregnancy
I was always taught that pregnancy was an indication FOR
Drainage and that is was great to have it during pregnancy, provided
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
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).
Hosiery - no reason not to wear it.
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.
Lymphoedema and Pregnancy
By Professor Peter Mortimer, LSN Chief Medical Advisor and
Dr Sahar Mansour, Consultant Clinical Geneticist, St. George's Hospital, London
Changes in a
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 the plasma 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.
Lymphoedema and Pregnancy
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.
Risk of Inheriting
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:
How Can You Tell
If the Baby is Affected
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.
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!
Pregnancy may trigger or exacerbate lipoedema 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
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Lymphedema and Pregnancy