Unable to find the ectopic pregnancy

Main Board
1

Hi everyone, I found out I was pregnant in April and sadly started to bleed 5.5 weeks in. We thought I’d just had a miscarriage after 12 days of bleeding but during that time my hcg levels didn’t come down they were still rising and no sign of baby. Diagnosed with PUL specifically ectopic. My hcg levels were 189 when I started bleeding and from the week and a half rhey steadily increased not at a viable rate. I had 1st dose of methotrexate on the 9/5 and it didn’t work, my hcg levels 7 days on were up to 2300. Is that high? I had my 2nd dose of methotrexate 10 day’s go and now I’m at 1300ish. I’ve had no bleeding since my 1st dose, I’ve had pain which I’ve checked in with epau about regularly. It’s been really upsetting but the things I’ve found the worst is the anxiety relating to the threat of rupture. Especially now since I’ve had a pain. Every cramp I panic. During the time of diagnosis I’ve been going out of my mind because on all 3 scans there was no sign of a baby. I’ve heard woman talk about the size of their “mass” but we haven’t been able to locate it on the scans. Is this common? How can I loose a baby I can’t even see? How can it not be found? Has anyone else had this experience?

The pain I’ve had had been on my right so it makes me think it’s got to be there. I’m just hoping my levels come down and I don’t rupture in the mean time. X

2

Hello

Firstly May I say that I am sorry for your loss.

I am by no means an expert and definitely not medical, but my surgeon explained my PUL better than I expected.

My understanding is that the pregnancy begins with a cluster of cells, which then develops into a foetus. My pregnancy was in the early stages when I suffered an ectopic pregnancy and was told that it would need to be removed along with my tube.

The reason that they couldn’t see my child was because it was so early in the pregnancy and although my hcg levels were rising, the cell bundle cannot be seen clearly on an ultrasound…even an internal one.

My pregnancy was not measured until it had been removed by surgery. I don’t think this is unusual in very early loss.

Again I’m sorry for you loss and hope that this (non-medical) explanation helps you a little.

Much love at this time

3

Dear Nat,

I am so sorry to hear of your ectopic pregnancy and loss,

hCG levels are different for us all however methotrexate is most effective in the earlier stages of pregnancy, usually when the pregnancy hormone ‘beta hCG’ level is below 5000 mIU/mL. The risk of rupture is higher in pregnancies with levels greater than this. Your levels are well below this and declining which is good news. Although I can never say there isn’t a chance of rupture, everything is going on the right direction.

I also had methotrexate and I know how worrying it is, especially when we do not know what is going on with our bodies and have no control over it, you have friends here who understand.

I am afraid it is difficult to predict how long it will take for your hormone levels reach non-pregnant levels. As we are all individual, our bodies respond differently to the drug and it depends on factors like how high levels reached and our unique physiology. What I can say is that it can take a number of weeks and, while it can take some time, it is not as invasive a procedure as surgery. It is also encouraging that your levels are falling steadily although I appreciate that it can be a drawn out process. Also, in terms of chances of future successful pregnancies, studies do not show a significant difference between treatment routes, whether surgical, medical using methotrexate or expectant management (allowing time for the body to resolve the pregnancy itself).

Above all be kind to yourself and allow time to grieve, to heal both physically and emotionally. We will be here for you for as long as you need,

Sending much love and gentle hugs,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

Ectopic pregnancy patient information suite: Highly Commended in the 2019 BMA Patient Information Awards

During the coronavirus outbreak, The EPT team is still working hard to provide crucial information and support to women and families experiencing ectopic pregnancy as quickly and efficiently as we can.

If we have been able to help you, are you able to help us with a small donation or by volunteering or fundraising?

Further information is available at ectopic.org.uk

Email us: ept@ectopic.org.uk

We provide a call-back helpline service: 020 7733 2653

Take a look at our newsletters and subscribe to our mailing list here: https://mailchi.mp/986bdd6091ee/ectopic-matters

Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team

4

Thank you both for your kind words.I’m sorry to hear you’ve both been through this also. I ended up having an overnight in EPAU this week as I had signs of rupture but luckily that wasn’t the case. Levels are dropping but not yet near 0. They’re at 890. I think I was feeling effects of the MTX as I had intense pain on one side and I’ve always had light headed/dizziness since the 2nd dose of MTX which hit me hard. It’s reassuring hear I’m not alone in terms of “seeing the pregnancy” although it’s a strange thing not knowing. Just got to hope I get safely down to 0 now.