Hormonal Changes: Contraception, Pregnancy, Childbirth and Menopause

As Lipoedema is a disease that typically develops in women at times of significant hormonal change such as; puberty, pregnancy or menopause, there is wide consensus (though no current supporting clinical evidence)that female hormones have a role to play in the initiation or severity of Lipoedema, with oestrogens in particular being implicated. Because of this, women who have already been diagnosed will have genuine concerns about the impact of contraception or pregnancy on their bodies, over and above those concerns any other woman may have.

Contraception

Presently, there is no definitive research into the use of different methods of contraception and their effect on Lipoedema. However, some patients have described their condition as worsening, or even beginning, at the same time that they began to use hormonal contraceptive methods. This has most commonly occurred with the oral contraceptive pill, although many other patients take the pill for many years without any worsening of their Lipoedema. Other patients have had adverse reactions to the contraceptive implant.

3% of women responding to the 2014 Lipoedema UK Big Survey reported their first lipoedema symptoms coincided with the use of hormonal contraceptives.

The options for patients with lipoedema who do not want to use contraceptives that will introduce any oestrogens or artificial hormones into their bodies are:

The Intrauterine Device (IUD), also known as the copper coil (highly effective)

Sterilisation (vasectomy preferable)

Condoms (male and female)

Contraceptive diaphragm or cap,used with spermicide

Natural family planning (rhythm) methods

For women who require effective, reliable contraception and management of heavy periods, or other conditions such as endometriosis, the IUS (Levonorgestrel Intrauterine system), a hormonal coil, is likely to be their first choice, as it has a very minimal hormone dosage, and contains only progestogen, no oestrogen.

The Progestogen Only Pill (POP) may be suitable for some women, but the Combined Oral Contraceptive Pill (COCP) is unlikely to be recommended.

Of the above, the IUS, IUD/copper coil and sterilisation are the most effective methods of contraception. While condoms, the cap and natural methods may be suitable for spacing a family, when a reliable method is important, they are not to be recommended. However use of condoms may often be advised alongside another method to provide protection from sexually transmitted diseases. It is also worth noting that the diaphragm/cap is not readily available.

For women seeking emergency contraception, most will be offered a hormonal (Progestogen) product. A highly effective alternative is the IUD/copper coil, which can be inserted up to five days after the last possible ovulation, and sometimes later depending on timing of intercourse in the cycle.

Deciding which contraceptive method to use will depend on many factors besides Lipoedema, and this is a discussion all patients should have with their GP or family planning clinic. Ultimately, the choice may be a balancing act: if contraceptives without hormones are not an option, the effects of hormonal methods on Lipoedema are still likely to be far less marked than those of an unplanned pregnancy and childbirth.

Pregnancy and Childbirth

In the 2014 Lipoedema UK Big Survey, 9% of women taking part reported they developed the first symptoms of the condition during pregnancy or after childbirth. As to whether pregnancy will cause Lipoedema symptoms to worsen, there is no definitive answer; there has not yet been an objective clinical study on the effects of pregnancy on Lipoedema.

Certainly many women do report that lipoedema symptoms got worse during their pregnancies. They experience an expansion of limbs or limb areas already affected, and/or find areas previously unaffected by Lipoedema became enlarged. Pain and tenderness can also increase. Other women, however, have undergone multiple pregnancies without any long-term change in the appearance of their legs, increase in pain, or decline in their mobility. Other women found their limbs got larger during their first, but not subsequent pregnancies.

Being overweight generally can increase the risk of pregnancy-related complications, such as high blood pressure, gestational diabetes and pre-eclampsia. It is therefore just as important for women with Lipoedema to curb excessive weight gain, follow a healthy diet and remain physically active during pregnancy. The idea of eating for two is a dangerous myth, although some weight gain in pregnancy is natural and to be expected.

All pregnant women should try to elevate their legs as much as possible and drink plenty of water, to prevent the build-up of fluid. They should continue with regular, moderate exercise for as long as possible. Women already diagnosed with Lipoedema should continue to wear compression garments: many compression hosiery brands offer maternity ranges with flexible tummy panels. It is recommended that thigh-high garments be worn during delivery, especially if patients have intravenous infusions or a Caesarean section.

Because many women with Lipoedema are very self-conscious about their bodies, they may have concerns about their privacy, dignity and modesty in the labour/birthing room. They may worry about midwives or other medical staff handling their legs, which are likely to be tender, painful and bruise easily. Injections, such as Syntocinon, which are used to expedite the delivery of the placenta are routinely administered in the thigh, but do not have to be, and women with Lipoedema may prefer such injections to be administered elsewhere.

Both patients and health care professionals should raise the issue of Lipoedema in pregnancy at an early stage and discuss any concerns. Any specific requirements should be written into a birth plan, so that every medical professional reading the patient’s notes is aware of them.

Menopause

The majority of affected women have already developed Lipoedema by the time they reach menopause. However, in our 2014 Big Survey, 4% of the women taking part said their lipoedema symptoms first appeared at this time (10 out of 250 women). Two more said their symptoms had first appeared following a hysterectomy.

There is currently no other published research on Lipoedema and the menopause.

Lipoedema In The Family

Patients considering or intending to have children are likely to have concerns about the hereditary and genetic aspects of Lipoedema. This is a valid concern; Lipoedema does

often run in families and we suspect it is a genetic disease. The possibility of genetic counselling arises to support couples along their decision process. The cause is unknown, but current research points to a gene that passes down in an autosomal dominant way. This means only one parent needs to have the gene in order to pass it on. If only the mother or father has Lipoedema in their family, any child they have together will have a 50% chance of inheriting the Lipoedema gene. If Lipoedema is in both families, the chance of having a child with the lipoedema gene is increased slightly.

If a male child inherits the gene, he will probably be unaffected by the disease and will not need any special treatment. But, as a carrier, he may pass on the gene to his own children without knowing it. Currently, there is no genetic diagnostic test to determine whether or not the male offspring of a Lipoedema patient is a carrier.

If a female child inherits the gene, it is highly likely she could develop Lipoedema later in life. She will not need any urgent treatment or special care in her early years and there is no need for her to wear compression hosiery until symptoms become evident. If any obvious changes are observed, early referral and diagnosis is crucial so that treatment can be started promptly.

A team of Lipoedema specialists at St Georges Hospital in London is conducting a long- term study into the genetics of lipoedema. The research team is studying families in which there are several generations with the disease. The team have made great strides in identifying genes in similar conditions, and are optimistic that the genetic predisposition(s) leading to lipoedema can be ascertained in time.