Mystery Pregnancy - Please help

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Hi all,

Just hoping for some help if anyone has any advice or similar experiences etc.

7/6/21 positive pregnancy test. Had bleeding and cramping, didn’t think anything of it as this would be my second pregnancy. Started having dark brown discharge and tummy pains again and some light bleeding so was referred to EPAC.

23/6/21 had a scan, can’t see uterus, ovaries, tubes etc. Can’t see any pregnancy. Took hcg bloods. Came back at just under 11000. Scanned by assisted conception specialist, definitely can’t see any pregnancy in uterus or anywhere else. Referred to another expert in scanning from Ireland.

24/6/21 new expert scans and thinks she can see a sac behind my c section scar but not sure due to scarring. Asked to come back next day for more bloods.

25/6/21 see junior specialty registrar and do repeat blood. Phone call to say bloods up to just over 13000. Suspicious of ectopic and to come back to discuss keyhole surgery option.

26/6/21 speak to new consultant, advises to do keyhole surgery to sing ectopic. I have a panic attack due to previous trauma and ask that we do scans first to rule out everything else first before going for surgery. Dr finds what he thinks is baby attached to csection scarring. Scarring has gone into my bladder or something like this and says that surgery is not recommend as too high risk, needs to be treated with methotrexate. Will confirm diagnosis with MRI. Get back from MRI and still cant find pregnancy. Suggests either waiting to the following day for bloods but will likely have to wait until the Monday for injection by which point pregnancy has progressed further with high risk of rupture and will need surgery or have injection and come back for blood work today to see if it’s worked.

29/6/21 I went for blood work today. Had even more scans because for some reason this doctor thinks he’ll be the one to find the pregnancy after 4 other EXPERTS couldn’t and talks about finding viable pregnancy which how could you possible think this 3 days after giving me the injection? Anyway, hcg has come back at 18000.

I’ve started bleeding a bit so really hoping it’s doing what it’s meant to but I just don’t know anymore. I’m devastated and feel so absolutely traumatised by this all. We are no further forward than we were a week ago and no one can give me answers. I’m to go back on Friday for repeat blood work to see if the hcg has gone down, if not I’m to get the second dose. If this second dose doesn’t work I’ll need surgery and I’m terrified. What is going on? Where is this baby? Why is my hcg not dropping? Was I ever pregnant or is this something else that’s being overlooked?

I know they need to go through their steps but is it possible that they’re missing something? Could I not have been pregnant and they’re missing something because they’re so determined to find something that isn’t there?

I can’t keep going on like this.

Has anyone had anything similar or have any advice or just any answers or suggestions?

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Dear Megz,

I am so sorry to hear of the worrying time you are going through.

Unfortunately I am not medically trained so cannot give you specific advice on your queries.

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. You may see from this that hCG levels only indicate certain possibilities and are not in themselves a definitive guide.

When a pregnancy cannot be located, it is known as a Pregnancy of Unknown Location or (PUL). This is not a diagnosis but a label until the final location can be identified with certainty. 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.

Following methotrexate injection, 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. They will however discuss this with you.

As I mentioned, I am not medically trained but I would like to think of there was anything else worrying causing these symptoms, it would have been evident on an MRI scan.

My advice would be to write down all of your questions, concerns and fears and ensure each of them are addressed by your medical team at your next appointment.

Sadly I do have to remind you that if you experience pain which seems unusual and is concerning you and, in particular, if you experience any worsening bleeding, it is better to get checked out to be on the safe side.

Sending much love and gentle hugs,

Karen x

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Hi Megz,

I am so so sorry, this sounds incredibly traumatic. My story is on a smaller scale but I also have a bit of a mystery pregnancy. I was seen by 4 specialists over a period of 3 weeks and given three different diagnoses in this time, they just couldn’t find it. It was a complete emotional roller coaster. Even the final diagnosis, which was ectopic, couldn’t say for sure which tube the pregnancy was in, which I don’t really understand. I was also given methotrexate. I hope you get some answers soon. xx

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I’m really sorry to hear this. I hope hire been able to move forward with this in some way in the last few days. I was diagnosed with a PUL suspected ectopic after a 12 day bleed and no sign of baby. I was convinced I’d had a miscarriage. It was so upsetting and I felt angry that they could t see my baby anywhere on scans/ I was in denial, I thought they were wrong but was treated with methotrexate. I had 2 doses as my levels increased. When they increased after 1st I had to accept the baby was still there. They finally located the pregnancy in my right tube around 5 weeks into the problems starting it was awful. The whole time I was absolutely doing my nut, that they just couldn’t find it. In hindsight I wish I’d just got the methotrexate asap. Your situation is different but I wanted to let you know you’re not alone and I understand how you must be feeling. hope you’re ok x