Sexual health for women
Maintaining a healthy sex life with scleroderma
Many women with scleroderma have had pregnancies before their condition developed. It is important to be aware that pregnancy can be more complicated if you have scleroderma, and you may need more medical involvement than in previous pregnancies.
The majority of women with scleroderma will have normal fertility. Young women with scleroderma may have a higher risk of infertility than older women who have had previous children (Lambe et al 2004). It is vital to use effective contraception and talk to your doctor before trying to become pregnant.
There are some extra risks with pregnancy, particularly if you have the systemic form of scleroderma. Historically, the advice given to all women with scleroderma was to avoid pregnancy. But recently it has been shown that 70-80% of women will have a successful outcome of pregnancy.
If you have the localised form of scleroderma, or well-controlled stable systemic sclerosis and do not have any heart, lung or kidney complications it is likely that your pregnancy will be relatively straightforward.
Possible increased risks for women with systemic disease include:
The importance of attending pre-conception care cannot be stressed enough. It is vital if you are considering pregnancy that you ask your GP to refer you to a specialist rheumatologist and an obstetrician with experience in managing scleroderma and pregnancy. They will be able to assess your current health and assess the risks for you and your pregnancy. Some drug treatment may need to be stopped or altered prior to conception or in early pregnancy.
Physical tests are likely to be arranged, including:
If you have serious complications affecting your heart, lungs or kidneys you may be advised not to contemplate pregnancy and to continue with effective contraception.
If you have a recent diagnosis of scleroderma (within four years) you may be advised to delay pregnancy, and continue using effective contraception until your condition is stable. This is because complications in pregnancy are higher with more recent scleroderma onset.
General pre-conception care is very important and your GP will be able to provide this. If you are overweight (BMI more than 30) it is important to lose weight before getting pregnant. If necessary, you will be given advice on how to achieve this.
All women are advised to take folic acid daily prior to conception and for the first three months of pregnancy as this reduces the risk of spina bifida in the baby. These might be prescribed, if not they can be bought over the counter at a chemist.
You should not smoke, avoid recreational drugs and avoid alcohol. You may be advised to take low dose aspirin (75mg) from 12 weeks of pregnancy, as this reduces the risk of pre-eclampsia.
It is important that you let your health care professionals know that you are pregnant as early as possible so a plan of care can be arranged. In some areas of the UK you can contact a midwife directly who will liaise with the hospital doctors and your GP.
You will be classed as a 'high risk pregnancy' and will have shared care from a multidisciplinary team including a midwife, obstetrician and rheumatologist. If your local hospital is unable to provide the specialist care you need you may be advised to have your care at your nearest teaching hospital to ensure access to the appropriate specialists.
Some hospitals have joint 'maternal medicine' clinics where all the specialists who are caring for you attend, cutting down on the number of hospital visits you need. You will still need support and care from your family doctor and community midwife, who will work in partnership with the hospital team.
Your hospital team will make an individualised plan of care for your pregnancy. Your medication will be reviewed. Some common medications are safe in pregnancy (e.g. low dose steroids; calcium channel blockers such as nifedipine) and may be continued. Others (including ACE inhibitors and angiotensin-2 receptors) will probably be discontinued, as they are known to increase the risks to the baby during pregnancy. Your doctors will discuss the risks and benefits of each medication you are taking.
Herbal remedies and over the counter drugs are best avoided unless you have discussed them with your doctor.
At each antenatal clinic appointment you should expect your blood pressure to be measured and a sample of your urine tested. Your midwife or doctor will discuss the standard screening tests offered to all pregnant women, including testing for certain infections and screening for chromosomal problems in the baby such as Down's syndrome.
You will be offered at least two ultrasound examinations – one for dating the pregnancy at around 12 weeks and another to exclude major abnormalities at around 20 weeks. You may also need further scans to check on the growth of your baby in the second half of pregnancy, especially if you have any complications such as high blood pressure.
Most women with systemic sclerosis will be offered an appointment with an anaesthetist during their pregnancy. This is because there are some extra anaesthetic risks associated with scleroderma. It can be more difficult to insert a drip or take blood if you have skin involvement.
General anaesthesia, where a tube is inserted down the throat, can be more difficult as mothers with scleroderma may have thickening of the tissues in the throat. If your anaesthetist thinks this applies to you then he/she may advise avoiding general anaesthesia if at all possible and using a spinal or epidural technique instead.
There is conflicting information as to whether scleroderma worsens in pregnancy. The majority of women will probably not experience any deterioration. Some women may experience skin thickening. If you have recent onset disease or kidney involvement there is an increased risk of deterioration in pregnancy and you will be monitored carefully for any signs of this.
Heartburn is extremely common in pregnancy and women with scleroderma may suffer more from this. You doctor or midwife can give you advice on managing this, for example adjusting your posture, sitting upright after eating, and eating slowly. Drugs such as ranitidine or omeprazole are safe in pregnancy. They may be prescribed to reduce the amount of acid in the stomach.
On the positive side, if you suffer with Raynaud's phenomenon as part of your disease, your symptoms may lessen, or temporarily disappear because pregnancy increases your inner body temperature and increases the amount of blood resulting in more warm blood going to fingers and toes.
Most babies are unaffected by the mother's diagnosis of scleroderma. A few women with scleroderma have specific autoantibodies called Anti-Ro, Anti-La or antiphospholipid antibodies. If you have Anti-Ro or Anti-La antibodies, these can cross over the placenta and into the baby's blood circulation where they can occasionally cause inflammation of the baby's heart. This is called “heart block” and can interfere with the electrical impulses that keep the heart beating regularly. A special test called a fetal echocardiogram might be required during pregnancy to assess the baby's heart. If you have antiphospholipid antibodies this can sometimes increase the risks of pre-eclampsia, a small baby and pregnancy loss – your doctor will discuss these risks in more detail with you. If you have any of these antibodies you should be offered regular scans to check on your baby's growth and wellbeing.
Most women will have a relatively straightforward pregnancy and will not need to be in hospital. If any complications start to develop, for example pre-eclampsia (high blood pressure with protein in the urine) or concerns about the baby's growth, you may need to be admitted to hospital for monitoring.
This can cause a dilemma if there are other children at home, and it is best to discuss this possibility in advance with family and friends to see if family support could be available at short notice.
This depends on whether there have been any complications during the pregnancy and how severe your scleroderma is. The majority of women are likely to have a straightforward vaginal birth, especially if you have had vaginal births before. If there is concern about the wellbeing of the baby, or you develop pregnancy complications such as pre-eclampsia or if your scleroderma gets worse you may be advised to have the baby early. This might be by inducing labour with drugs or by caesarean section. Your doctors should fully explain your options to you and you should feel involved in any decision making about the birth.
If you are planning a normal birth, your progress in labour should not be affected by your scleroderma. The anaesthetist may advise that you consider an epidural in early labour so that if there are complications and you need a caesarean birth. The epidural can be topped up for the birth avoiding the need for a general anaesthetic. However it is your choice as to what type of pain relief you wish to use in labour.
Some mothers find that their scleroderma worsens after the baby is born, so you may be advised to restart any pre-pregnancy medication. You may need to stay in hospital for a day or two longer than other mothers if your symptoms flare up or there have been any pregnancy complications while further investigations are carried out. The hospital will arrange follow-up appointments as required, and also for a midwife to visit you at home. If you have had any kidney complications or pre-eclampsia you will need further monitoring of your blood pressure and kidney function. If your hands are affected by scleroderma you may need assistance with handling the baby.
The paediatrician will examine your baby after birth and might need to take some blood from either the baby or the placenta. If your baby is premature, or small for its age, admission to a neonatal unit may be necessary.
If you have Anti-Ro or Anti-La antibodies your baby has a 5% chance of developing a condition known as Neonatal Lupus. This presents at 2-3weeks of age with a rash giving the appearance of 'owl eyes' but fortunately usually resolves by about 6 months of age. If you have any concerns about your baby you should speak to your midwife, health visitor or family doctor as a referral to a paediatrician may be necessary.
Breastfeeding is usually encouraged and most medication used for scleroderma is safe to take during breastfeeding. Speak to your doctor about this. In the period after birth, known as the puerperium, the body rapidly returns to the non-pregnancy state and a Raynaud's attack is possible. Raynaud's symptoms can occur on the nipple, which are not only painful but also likely to be mistaken for other breastfeeding complications such as thrush or cracked nipples.
Although there are challenges with pregnancy for women with scleroderma, becoming a mother is still a joyous and fulfilling event. The majority of women with scleroderma embarking on pregnancy will have a successful outcome.