Doubt after ectopic

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Hi all,

I’ve recently had an ectopic pregnancy (my first pregnancy, we’d been trying for 6 months).

The most distressing factor for me in the whole ordeal has been the uncertainty. Even after having the injection there is still a part of me that worries whether it definitely was ectopic. I was sent to hospital by my GP after extreme abdominal pains on my right side and a positive pregnancy test. Ultrasound showed no pregnancy seen anywhere yet, and I was told the pregancy was too early to cause pain if it was ectopic (and I have endometriosis so get a lot of pain). So we waited – I had repeated bloods every 2 days which showed doubling hormone levels, but then eventually a scan showed a mass near my right ovary. After waiting a little longer, in the next scan they said the mass was on the left and they’d got it wrong. I also have fibroids and on every scan they said how hard it was to see everything.

When my hormone levels slowed down at 1,500 and weren’t doubling anymore (and still nothing visible in my uterus) they advised methotrexate, which I agreed to (such a painful decision).

What I’m struggling with is the doubt: they could never say it was definitely ectopic, just that they thought it was. I have endometriosis, so am worried that what they saw could have been a cyst or something else (not helped by the fact that they changed their mind about where it was!).

I was 7 weeks when I had the injection, and from reading online it seems like there have been cases where nothing is seen in the uterus at that stage anyway, although I know it’s not normal. A few days after the methotrexate I had bleeding and then passed some greyish bloody tissue, a few centimetres or so long, which was incredibly distressing as I didn’t know that might happen. The hospital said it was probably the ‘products of conception’ and to bring it in if it happened again (it didn’t), but there’s a part of me that worries that that was me miscarrying a uterine pregnancy and we’d got it wrong.

I’ve requested to have another scan after my first period, to check that my tubes are now clear – not particularly to prove anything (it will obviously be devastating if there is still a mass in my tube and it turns out it wasn’t the pregnancy) but because I don’t want the uncertainty when I try again – I want to start with a blank slate.

Basically, as for everybody here, it’s been a horrible experience and I’m still very sad every day, which is made worse by the continuing niggling fear that I might have chosen to end a viable pregnancy. I’m not sure exactly what I’m looking for by posting this, but any reassurance or similar experiences would be really helpful.

Thank you,

Laura

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Dear Laura,

I am so sorry to hear of your ectopic pregnancy and loss. My first pregnancy was also ectopic, so I can fully understand what a frightening experience it all is.

When diagnosing an ectopic pregnancy, doctors use a combination of transvaginal ultrasound scanning and blood tests to check HCG levels. Usually scans take place at around six weeks gestation as there is a reasonable chance of seeing an embryo at around this time. If scans are 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.

As you have suggest your levels were not rising as expected and sadly nothing was identified in your uterus, this will by why the methotrexate injection was suggested. I understand how you feel, but there really is nothing you could have done to prevent this.

To reassure you, the bleeding that follows an ectopic pregnancy can be very heavy and clotty and result in the passing of what we call a decidual cast. This decidual cast is the lining of the uterus when we are pregnant. The sudden drop in hormones can cause the material inside the uterus to be shed in layers and the material that is passed can be grey, pink or white as well as appear like a clot or dark or frank red blood. Women can often mistake it for the tissue of their baby which can cause worry but it is important to remember that it is a normal process for the uterus lining to be shed.

The chances of a further ectopic after a first in UK is 10%. So that’s 90% chance of the embryo being in right place next time. While generally it is possible to conceive after an ectopic pregnancy, the amount of time it takes varies from couple to couple. Factors include age, general health, reproductive health and how often you have sex, among other things. It may be comforting to know that 65% of women are successfully pregnant within 18 months of experiencing an ectopic pregnancy and some studies suggest this rises to around 85% after two years.

As a gentle reminder, 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.

Above all, be kind to yourself, allow time to grieve, to heal both physically and emotionally,

We are all here for you,

Sending much love,

Karen x

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Further information is available at www.ectopic.org.uk

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Thank you so much Karen, I’m really grateful for your reply, and very sorry for your loss too.

I’m starting to feel a little more positive this week, so hopefully things will keep getting better from here :slight_smile:

x