Dear Sarah,
I am so sorry for your l loss,
If no pregnancy can be seen in the uterus, or there is a small gestation sac in the uterus without a yolk sac or embryo, the pregnancy will be medically labelled as a Pregnancy of Unknown Location or (PUL). It is important to understand that PUL is not a diagnosis; it is a label given until the final location of the pregnancy can be identified with certainty. In the event of a PUL, blood will be taken to measure serum progesterone and hCG and the hCG test repeated 48 hours later.
If scans are also inconclusive, doctors would carry out a series of blood tests to check hCG levels to see if the numbers are rising as expected. However, in isolation, hCG tests only provide a part of the picture - declining levels indicate that a pregnancy has ended and will be miscarried. It can also possibly indicate an ectopic pregnancy that is “self-resolving”. Also hCG levels rising by less than 66% over 48 hours means it is likely (but not certain) that it is ectopic. If levels rise normally, they suggest the pregnancy is implanted in the uterus. You may see from this that hCG levels only indicate certain possibilities and are not in themselves a definitive guide. A positive identification of an implanted embryo on a scan is usually needed before a final diagnosis/certainty that the pregnancy has implanted in the uterus. Your levels were not rising as expected which infers that this pregnancy was sadly not viable.
Until the location of the pregnancy is known definitively or the serum hormone levels have decreased to below pregnancy levels, there is a risk of complications associated with an as yet undiagnosed ectopic pregnancy. For every 100 pregnancies labelled as a PUL about 10 will subsequently be found to be ectopic; and not all of these will need treatment.
With Methotrexate, you should wait until your hCG levels have fallen to below 5mIU/mL (your doctor will advise you when this is through blood tests) and then take a folic acid supplement for 12 weeks before you try to conceive. This is because the Methotrexate may have reduced the level of folate in your body which is needed to ensure a baby develops healthily. The Methotrexate is metabolised quickly but it can affect the quality of your cells, including those of your eggs and the quality of your blood for up to three months after it has been given. The medicine can also affect the way your liver works and so you need to give your body time to recover properly before a new pregnancy is considered. A shortage of folate could result in a greater chance of a baby having a neural tube defect such as hare lip, cleft palate, or even spina bifida or other NT defects. This is why the “wait” and then taking folic acid for 12 weeks before trying to conceive is so important.
I would ask why you have been advised to wait for 6 months as we do not have access to your medical notes to ensure there is no medical reason for this.
Some doctors also (mistakenly) think that because they have administered a second dose of Methotrexate that that they must also double the recovery time for the body. However, even in a second dose of Methotrexate, the dosage is still much lower than for treatment of other conditions and is still metabolised by the body very quickly.
Our medical advice is that, if you have had two injections, you should rely on your blood test results as an indicator of what is happening in your body and wait until your hCG levels have fallen to below 5mIU/mL in blood tests and then can restart taking vitamin/folic acid supplements. Also, in the first week it is important to avoid pain killers which fall into the NSAID group such as ibuprofen.
You are right in that the hCG level often rises on the day four blood test because the action of methotrexate is not instantaneous, so the cells will have continued to divide for two or three days after the injection was given, and some cells release more hCG when they start to disappear. Your doctors are looking to see a drop in your hCG value of at least 15% between days four and seven. If there has not been a 15% drop, this is when the doctors will consider a second dose of methotrexate or surgery.
A few days after the injection, it is usual to begin to bleed and this bleeding can last between a few days and up to 6 weeks.
Every 3-7 days, beta hCG levels will continue to be monitored to ensure that they are falling appropriately. Most only need one injection but in up to a quarter of cases a further injection may be required if serum hCG levels are not decreasing.
Methotrexate is at least as good as surgery in terms of subsequent successful pregnancies. This may be due to the fact that medical treatment is non-invasive, whereas surgery may cause some scarring around the tube.
Unfortunately medicine isn’t an exact science. In the UK, doctors should follow NICE guidance which provides information on standardised care, but we still find variations between individual hospital policies and doctors own experiences.
I would write down any questions you have so you can ask your medical team for all the answers.
Can I end by saying that you did not kill your baby. Sadly with ectopic pregnancy, The pregnancy would not be viable and The growing embryo can certainly be life threatening to mum in cases of rupture.
Please be kind to yourself and allow time to grieve, to heal both physically and emotionally,
Sending much love,
Karen x
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