Hormonal Changes & Lipoedema
How contraception, pregnancy, childbirth and menopause can affect people with Lipoedema.
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.
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.
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.
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 (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 has 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
Younger women may also like to read our dedicated Contraception and Younger Women (below) section 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.
Emergency contraception
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.
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 the NHS website and/or Contraception Choices. The FSRH also offers guidelines on contraception for people who are overweight or obese.
Contraception considerations for younger women (those up to 25 years old)
There is no specific mention of Lipoedema in either of the FSRH’s highly respected national guidelines (published in 2019) on Overweight, Obesity and Contraception or Contraceptive Choices for Young People. The following comments are therefore an extrapolation of respected and evidence-based guidance. Many of the general principles of clinical effectiveness and safety are likely to apply to women with Lipoedema (many of whom will have coexisting obesity, the same as the general population), and aim to provide a basis for discussion, given the lack of specific research or robust population studies.
One third of women has had sex prior to their sixteenth birthday, and younger (and overweight) women tend to have riskier behaviours, putting them at risk of unplanned pregnancies and sexually transmitted infections.
Condoms provide a good level of protection against infection, if used correctly, but are poor at preventing pregnancies in this group. With typical use, up to 20% of young women will be pregnant after one year.
Excellent methods to consider would be the progestogen only pill (POP), or the contraceptive implant (IMP, Nexplanon). The intrauterine device has become an excellent choice, especially for women over 20 or after childbirth. All hormonal methods are likely to have a slightly higher risk of rare complications such as clots in the leg (DVT) in women who have a BMI over 30, especially in those who also smoke, but in this younger population, their benefits almost always outweigh any risk of potential adverse effects. Women wishing to avoid all hormones could consider the Cu-IUD (‘copper coil’).
Women often cite contraception as causing weight gain, but there is little evidence to support this, and comparison with women over time who have or have not used hormonal contraception (the Depo-provera injection being the exception) show no difference in weight gain between the populations. However, there is no specific evidence available either for women who are already overweight when starting hormonal contraception, nor for women with Lipoedema. Changes in weight in the general young female population are extremely common around menarche and late teens/early 20s. It is estimated that 70% of the adult female population in the UK is overweight or obese.
It is important for young women to understand that unintended pregnancies are very common, and pregnancy is a very much greater risk to a woman’s health than using effective contraception. The discussion around managing risks in planned pregnancies when overweight (for any reason) is not included here.
The emergency pills are less effective in women with BMI over 26 (overweight) and specific advice should be provided by a clinician. The Cu-IUD is highly effective as emergency contraception, but sadly is not often acceptable to the woman, nor available in a timely way.
Young women frequently need advice and help with managing heavy, painful or irregular periods, which are common in this age group. The management of these can be different in different age groups as the background causes may change with age. It is important to understand the usefulness of hormones in managing these symptoms, and to discuss options with an experienced clinician. Contraceptive hormones are frequently used, even when contraception is not required, such as those women not in a relationship, or for same-sex couples.
When it comes to fertility, none of the methods of contraception used in the UK affect long-term fertility directly. The Depo-Provera injection can lead to a delay in return of fertility of up to one year, but this method would not usually be recommended for women with Lipoedema, given that it is known to cause weight gain in many women.
Most clinicians will not be aware of Lipoedema, nor how it is affecting you, but that doesn’t mean that they won’t try to understand and tailor their advice to your individual needs. Please work with them to do so.
If you are a member of Lipoedema UK, you will have access to our information leaflets to show your GP. It can be helpful to take one of these leaflets with you to help the discussion.
Be aware that 70% of the normal population is overweight or obese. This applies to women with Lipoedema also, so be aware that for most women with Lipoedema, they are likely to be overweight and have Lipoedema.
Most patients find it very upsetting to discuss their weight. The FSRH states that “women’s perceptions of weight gain while using contraception have been shown to be incongruent with their actual weight”. This often leads to a disjointed, defensive discussion, where the woman becomes angry/upset if their weight is mentioned in any context, however relevant clinically. This is a significant issue for clinicians: some clinicians report that in trying to help a patient, they risk receiving a formal complaint or verbal abuse as a result of trying to address the many clinical issues associated with excess weight, whatever the cause.
An honest discussion is always more productive. Remember the clinician is trying to help and offer you the best advice to enable you to get maximum benefit, so rather than getting upset that your weight is being discussed, try to make the most of your clinician’s time and glean as much advice as you can. Your clinician is not there to be unkind or horrible but to offer clinical advice.
Your GP. Many practices have clinicians (doctors, nurses, advanced nurse practitioners/ANPs) who have enhanced knowledge and interest in Women’s Health. How you access these varies from practice to practice: some have online requests, others are via telephone reception. Ask for someone specialising in Women’s Health, as you have a more complex situation.
Sexual Health Clinics. These are now part of Public Health, funded by the local councils. Depending on your local clinics, they may just offer contraception and not deal with wider women’s health issues (including HRT). They may also be limited in their wider knowledge of medicine, or not funded to offer it even when able to do so. Most will offer excellent advice and a limited range of contraceptive choices, but including POP, intrauterine contraceptive devices and Nexplanon.
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 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.
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 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 wellbeing. 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.
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.
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 and Menopause Matters. The NHS website also contains information about menopause and HRT.