Hormonal Changes

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. As a result, women who have Lipoedema will have genuine concerns about the impact of contraception, HRT or pregnancy on their bodies.

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Click on the links below to find out more, including information about how Lipoedema runs in families.

 

Contraception

Presently, there is no definitive research, nor guidance, from nationally recognised clinical bodies (the FSRH, the RCOG and the RCGP) 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, although many other patients take the pill for many years without any worsening of their Lipoedema. 

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Some 3% of women responding to the 2014 Lipoedema UK Big Survey reported their first Lipoedema symptoms coincided with the use of hormonal contraceptives. In the absence of guidance, or evidence, it would seem clinically sensible to avoid any exogenous hormonal input, or to keep the dose as low as possible, while providing the best contraception.

 

What are the options?

 

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:

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• The Intrauterine Device (Cu-IUD) This is highly effective

• Sterilisation (vasectomy preferable) Considered a last resort, and often not routinely funded by the NHS, especially female sterilisation, but may be an option for a couple who have completed their family

• Condoms (male and female) These have a high failure rate, especially in younger couples, but are useful as an ‘additional’ method, and to reduce the risk of sexually transmitted diseases

• Natural family planning (rhythm) methods This has a high failure rate, up to 25% of couples practising this method will be pregnant within a year

• The LNG-IUD (Levonorgestrel Intrauterine system) For women who require effective, reliable contraception and management of heavy periods, or other conditions such as endometriosis, the LNG-IUD) is likely to be their first choice, as it has a very minimal hormone dosage, and contains only progestogen, no oestrogen. This is a highly effective method, and might be considered the best long-term option for most women (UKMEC 1), with the most positive benefits, including extremely low failure rate, highly effective management of menstrual problems, and very low systemic levels of additional progestogen

• The Progestogen Only Pill (POP) This may be suitable for many women. Women may wish to avoid the Combined Oral Contraceptive Pill (COCP) despite the lack of evidence, to avoid the use of oestrogens, but the POP is equally reliable in terms of contraceptive cover, is safe at any weight (see below for information about contraceptives and high BMI), and can be used long term, until beyond the menopause.

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Younger women may also like to visit our dedicated Contraception and Younger Women page for additional information.

 

Of the contraception methods listed above, the LNG-IUD and Cu-IUD 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, these 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 an ineffective method of contraception, and no longer routinely available.

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Emergency contraception

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Most women seeking emergency contraception will be offered a hormonal (Progestogen) product. However, a more effective alternative is the Cu-IUD, which can be inserted up to five days after the last possible ovulation, and sometimes later depending on timing of intercourse in the cycle.

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Weighing up your options

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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.

It is important for women to understand that many common menstrual conditions (endometriosis, adenomyosis, dysmenorrhoea, menorrhagia, fibroids, PCOS) are effectively managed by standard hormonal contraceptives, and it is sensible to keep the risk/benefits in perspective and be open to clinical discussions around these. Choosing to avoid any hormonal management severely limits the ability to manage these conditions, and may inadvertently cause more problems in the longer term.

 

For further information about contraception, visit Sexwise [https://www.sexwise.org.uk/contraception] and/or Contraception Choices

[https://www.contraceptionchoices.org]. The FSRH also offers guidelines on contraception for people who are overweight or obese.

 
Pregnancy and Childbirth

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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.

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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 become 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.

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Advice during pregnancy

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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.

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During labour

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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.

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Both patients and healthcare 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). However, many women are significantly affected during the years leading up to, and beyond, the menopause, negatively impacting their work, relationships and well-being. For others, they may have a premature menopause, either naturally or as a result of surgical removal of their ovaries. For these women, the appropriate use of HRT could be hugely beneficial.

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Highlighting HRT

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The oestrogens in HRT are not the same as those in the Combined Oral Contraceptive Pill (COCP), and are considered more ‘natural’ and with a lower side effect profile. In terms of prescribing, the general concept of using as little hormone in the safest way possible can be applied, and it would be worth considering the transdermal route (through the skin, patch, gel, spray), with the addition as required of progestogen via the LNG-IUD, patch, or micronized progestogens orally.

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Topical (vaginal oestrogen) for urogenital atrophy, dryness etc is highly effective, and has minimal systemic effect, so could be safely used by most women long term.

 

For more general information on HRT, consult the British Menopause Society [https://thebms.org.uk] and Menopause Matters [https://menopausematters.co.uk]. The NHS website also contains information about menopause [https://www.nhs.uk/conditions/menopause/] and HRT [https://www.nhs.uk/medicines/hormone-replacement-therapy-hrt/]

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Lipoedema in the Family

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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 combination of genes that pass down in an autosomal dominant way. This means only one parent needs to have the genes in order to pass them on. If only the mother or father has Lipoedema in their family, any child they have together will have a 50% chance of inheriting it. If Lipoedema is in both families, the chance of having a child with Lipoedema is increased slightly.

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If a male child inherits the genes, he will probably be unaffected by the disease and will not need any special treatment. But, as a carrier, he may pass it on 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.

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If a female child inherits the genes, 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.

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Current Research

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A team of Lipoedema specialists at St George’s 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 has 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.

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