OC Support UK^TM

• No, it is nothing that you have done.
• It is known that this is a condition that is passed down through families so there is nothing you can do to prevent the condition from developing. However, it is thought that environmental factors such as diet or rest may help reduce the severity of the condition. It may be that as research progresses and more is learned about these factors, dietary advise will improve to minimize the effects of the condition.

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• If you expecting a boy there is no evidence to suggest that you are more likely to develop the condition.
• The same is also true if you are expecting a girl.

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• The positive news about OC these days is that the condition is more easily managed. There is still a small risk to your baby but with active management (which usually means treatment and choosing to deliver early) the risk of stillbirth in an OC pregnancy is believed to be the same as that for a normal pregnancy (1%).
• It is important that research continues so that the risk from OC can be reduced even further (click here to go to research).

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• If you are expecting a girl there is a chance that she will inherit a genetic susceptibility that makes her likely to develop the condition when she has children. Currently it is thought that the daughters (and sisters) of affected women have approximately a fifteen times higher chance of developing the condition.
• If you are expecting a boy there is also a possibility that he will inherit the susceptibility. This means that although his health is unlikely to be affected he could pass this on to his children.

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• Over the years researchers believe they have shown that delivering the baby early (around 37-38 weeks) reduces the risk of stillbirth. This is because it is known that stillbirth (in OC) tends to occur in the last few weeks of pregnancy. The reason for this is unclear although it is likely to be linked to all the changes that take place in the woman as her body prepares for labour. Further research is needed to establish this.
• It may be that you have been given medication in this pregnancy that has brought your bile acids back down to normal levels or at least to under 40 micromol/L. Given that some researchers suspect bile acids are thought to be one of the problems for your baby you may be wondering if you still need to have your baby early. Opinion about this varies. Some obstetricians believe that provided your pregnancy is being actively managed it may not be necessary to deliver your baby early. Other believe the benefits of delivery at 37-38 weeks may outweigh the risks associated with early delivery.

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• This is a difficult question to answer.
• It may be that you have been given medication that has brought your bile acids back down to normal or at least to under 40 micromol/L. Given that some researchers suspect bile acids are thought to be one of the problems for your baby it would seem reasonable to suppose that, provided your blood levels have come back to normal, your pregnancy could progress beyond 38 weeks.
• However, although the link to bile acids being the cause of stillbirth is strong, it hasn’t been proven. While there is not a consensus of opinion amongst obstetricians, many clinicians err on the side of caution and, even when the bloods levels are normal, deliver the baby between 37 –38 weeks.

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• Reported recurrence rates vary with some researchers stating 60% and others up to 90%. What is known is that women who have OC in one pregnancy are very likely to develop it again in a subsequent one.

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• Anecdotal (not scientifically proven) evidence tends to suggest that OC can be worse and perhaps even start earlier. My own thoughts are that in the next pregnancy you are more likely to be ‘waiting’ for it to start and so become extra sensitive to any itch. In the previous pregnancy, when you didn’t know about OC, you may have just dismissed the onset of the itching because it was so mild.
• And… I have known women who have reported that the symptoms have been milder the next time round and they have started later in the pregnancy.
• Don’t forget… there is always a chance you may not develop OC at all in a subsequent pregnancy!

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• Ursodeoxycholic Acid (UDCA) is currently an unlicensed drug for use in pregnancy. This is because the drug hasn’t been tested in large enough numbers of women. There have been a few small trials of UDCA but larger trials are needed.
• There is no evidence to date that shows UDCA has an adverse effect on the baby or mother.
• Do talk to your consultants about any concerns you may have.

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• There is no evidence so far to suggest that developing OC so early increases the risk of fetal distress or stillbirth.
• However, research has shown that you have an increased risk of early spontaneous labour.

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• There is no evidence as yet to show that expecting more than one baby increases the risk of OC-related fetal distress or stillbirth (although it does increase your chances of developing OC). You also have a higher risk of going into early spontaneous labour.

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• As for all pregnancies women are generally advised to avoid alcohol in pregnancy, and although it has no direct effect on OC, this is a sensible approach. There is no evidence to show that drinking alcohol will make the OC worse.

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• There is no evidence at the moment to suggest that following a special diet reduces symptoms or improves liver function, but some women have reported that omitting high fat food e.g. crisps/chips from their diet has helped them. Do talk to your consultant/midwife before embarking on any special diet as they will be able to advise you on how best to approach this.

Other things that women have found useful in the past include:

• Rest
• Cool clothing
• Relaxation or meditation
• Counselling

Some women have tried complementary medicines such as milk thistle and dandelion. However, it is important, as with all complementary medicines, that you discuss this with your doctor.

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• You may have been asked to come into hospital more frequently to have your baby’s heart rate monitored (cardiotocograph). There is no evidence to suggest that carrying out this procedure will identify the ‘at risk’ baby but it may help to reassure you. On the other hand, some women report that having to go into hospital so frequently actually increases their anxiety. Talk to your consultant or midwife about what you feel will help you the most.

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• The following information has been based on conversations I have had with Professor Elwyn Elias & Professor Catherine Williamson. The only methods of contraception that are likely to cause problems for women who have had OC are those containing hormones. However, there have been no large studies regarding the use of contraception following an OC pregnancy so you may be given conflicting advice about what you can or can't use. Given that it has yet to be established whether it is progesterone or estrogen that 'triggers' the condition it may be prudent to use only those hormonal forms of contraception that bypass the liver, such as the Mirena intra-uterine device. However, anecdotal evidence is showing that many women can tolerate the mini pill and some women are also able to use a low dose combined oral contraceptive pill. If you do decide to take the pill (the decision should be made in consultation with a doctor) it is important to make sure make sure that your liver function is normal before you begin. It should also be checked again approximately six weeks later. This is easily checked by requesting a liver function test (blood test). If you start to itch after you begin to take the pill you must stop. However, this itching shouldn't be confused with cyclical itching which is something that some women experience after having OC and can be linked to ovulation or the start of menstruation. This itching normally only lasts for a few days and disappears once ovulation has taken place or the woman's period starts. If you have had a cholestatic episode in the past (itching with raised liver function and bile acid levels) that has been triggered by taking a drug e.g. antibiotics, you may be more at risk of cholestasis using hormonal contraception. There are of course other forms of contraception that you can use and you may want to discuss these options with your GP, nurse, midwife or local family planning clinic.

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• If you have only recently had your baby the itching should have at least decreased in severity and will go in due course. However, if you are still itching four weeks after the birth you should see your GP for further investigation. Very occasionally women are discovered not to have had OC but some other form of liver disease.  You may need a referral to a hepatologist (liver specialist) or a gastroenterologist who has a special interest in the liver.
• If it is some time since you have had your baby, it may be that your itching is what has been termed 'cyclical itching'. This can usually be linked to ovulation or the start of menstruation. It generally only lasts for a few days and is not as intense as the itching experienced during an OC pregnancy. There has been no research to explain why this happens, but current thinking suggests that it happens because your liver has been left 'sensitive' to hormone fluctuations - hence the link to ovulation and menstruation.
• Some women have reported that they experience itching again in times of extreme tiredness and stress, but the reasons for this are not yet known.

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• Once again, there has been no research regarding HRT and OC. As with hormonal contraception, it's a question of trying it to see what happens. A starting point would be to see your GP or practice nurse to discuss this with him or her. It would also be a good idea to have your liver function checked before you start to take HRT. If it helps, I have been taking Elleste Duet (1 mg) for three years. Interestingly, I have noticed that my cyclical itching has returned, but it's not enough to bother me. I have my liver function checked annually.

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