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Pregnancy of unknown location - coming to terms with not knowing?

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Natalex
Posts: 2
Joined: Thu Jul 02, 2020 10:32 pm

Pregnancy of unknown location - coming to terms with not knowing?

Post by Natalex »

Hi,

Just wondering if anyone has any advice regarding a pregnancy of an unknown location and what happens if no concrete diagnosis can be made?

We are extremely lucky to have two beautiful boys, two children which at one stage we never thought we would have. I suffer from endometriosis so have always been placed within the high risk category. Our first pregnancy we experienced vanishing twin syndrome, previously my self and partner never really discussed the loss of the twin in depth maybe due to the fact the twin was absorded by our son so no physical signs and also my pregnancy was high risk due to our sons poor growth and then preterm labour.

My second pregnancy planned but happened extremely quick, I was breastfeeding still and we had literally discussed it during our first night away as a couple since the birth of our son and I fell pregnant than night - text book pregnancy and an amazing home birth.

3rd pregnancy we had been trying the longest for. My grandad was in a critical condition after contracting covid whilst in hospital, at first I thought the lack of energy was due to having juggling family life work and the worry of receiving a phone call.

We found out on the 8th of June we were pregnant and we were both over the moon. The 9th of June I recieved the phone call that my Grandad had passed away, in the space of two days we had been at two ends of the spectrum emotionally. I tried to think of the pregnancy as a small beacon of hope in the dark, a parting gift.

But I started to have nightmares of miscarring, husband put it down to grief but I just kept saying I didn't think I'd be able to cope if something happened. On the 23rd of June I wiped and had pink discharge with a small trace of blood - 30 minutes before my midwife appointment and I just knew something wasn't right. I sat in the appointment and tried to rationally think about the possibility of it just being cervical irriation but couldn't shake the feeling that it was something more.

That evening we booked for a private scan, I should have 6 weeks +5. I had early scans with previous pregnancies due to endo, so knew what to expect. Only this time they stated they could see a 3mm area which they thought could have been an earlier gestational sac but because there were no clear signs they would have to document the pregnancy as unknown location and refer me to EPU.

My periods had been irregular, some even reaching 37 day cycles so they ruled it could be possible I was just to early to detect. On the Wednesday I had my first blood test - hcg level was 544, Friday repeat level was 570. By Saturday I was being sick and I had started to lose pale brown discharge/blood on wiping, by Sunday I was having some light bleeding on and off.

I rang 111 due to the bleeding, sickness and feeling like I had been winded (only way to describe it). I was sent to maternity triage, after a number of discussions they agreed to have a look at my cervix and run some routine bloods, they confirmed my cervix was slightly open and it didn't look good.

I returned home, being told to watch out for further symptoms and that I would be seen on Monday by EPU and the gynae emergency on call. Monday came, they ran bloods on the back of my test from Sunday and called me to say they had risen to 670 - which I knew due to the sickness. Wednesday am I lost larger clots, and headed to a scan first thing.

They were unable to locate anything on the scan, including the so called area the private scan had stated to be endometriosis (which cannot be seen via ultrasound) or what they had stated to be an early gestational sac which due to the clots I wasn't surprised about. However I'm still confused as to what was seen as from researching I wouldn't have thought anything would have been visible due to my hcg level...

I had a repeat blood test that showed my hcg level had decreased to at least half, so I'm now under going expetent management. I haven't lost what I would count as a lot off blood, and in terms of pain at times I'm uncomfortable and the winding feeling still comes and goes but I'm sure my level has decreased again - husband states my heart rate has gone back to normal (he knew I was expecting before I did due to this, he noticed my heartbeat sounded the same as previous pregnancies)

I now just feel in a limbo. I haven't been able to grieve from My Grandad properly before I've ended up grieving for the loss of our baby. I'm concerned that we just might not ever really know what's happened and how do you process not knowing?

In terms of trying again, I'm not sure where this leaves us in relation to risk? As soon as I found out it was a potential ectopic my mind was racing worrying about if the worst happened and I would leave my boys without a mum - I felt guilty then about wanting to have another baby and the effects this is having on them. In particular our eldest who is only 2 and a half and keeps telling everyone his mummy is upset.

I know from experience of loss, no matter what that loss is it isn't something in which you get over - you just learn to live with it. But I guess I'm struggling to come to terms with not knowing what actually happened?

Thank you for reading and sorry its so long. It's the first time I've probably wrote everything down from an emotional perspective, previous I've explained to work etc in a way like it wasnt actually happening to me if that makes sense? Coping mechanism.

If anyone has any similar experience or advice it will be greatly appreciated.

Nat x

EPT Host 20
Posts: 3155
Joined: Thu May 31, 2012 10:58 pm

Re: Pregnancy of unknown location - coming to terms with not knowing?

Post by EPT Host 20 »

Dear Nat,
I am so sorry to hear of your losses, of both your grandad and your baby. To experience two losses in such a short time frame is difficult and my heart truly goes out to you.

Regarding the terminology, 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. The doctors would also want to repeat the scan.

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.
I am not medically trained so cannot give you specific advice but it is possible that what was seen on the private scan could have been the clots you mentioned too. It is true that that your levels may be too low to see anything definitive on the scans in your uterus. Scans are quite good at picking up changes in the fallopian tubes, so if nothing is evident in your tubes or elsewhere, it is possible that you are experiencing an early miscarriage rather than having an ectopic pregnancy, but your medical team will be able to advise you further on this.

As you mention baby loss is difficult regardless of how it happened, and coupled with the trauma of loosing your grandad at this difficult time, you need to be kind to yourself and allow time to grieve and to recover both physically and emotionally.

Regarding ttc, 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.
Importantly early scans avail. If you are diagnosed with an ectopic pregnancy, doctors carry out an internal transvaginal scan at around six weeks with subsequent pregnancies after an ectopic. This is because there is a reasonable chance of seeing an embryo around this six week mark.
We advise contacting your local EPU, reminding them of your ectopic pregnancy and booking an appointment. If you are unable to self refer, contact your GP who will be able to do this for you. Hopefully you will have some comfort to know you are under the radar of medical professionals right away.

When we experience ectopic pregnancy we are suddenly faced with a life threatening emergency and it's treatment, reduction in fertility, concerns about the future and the loss of our babies. Experiencing any one of these is an ordeal, putting them together is immense and your feelings are completely normal. There is no timeframe for recovery, please take your time and take each day as it comes.

We will be here for you for as long as you need,
Sending much love,
Karen x

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Natalex
Posts: 2
Joined: Thu Jul 02, 2020 10:32 pm

Re: Pregnancy of unknown location - coming to terms with not knowing?

Post by Natalex »

Hi Karen,

Thank you so much for your reply and information which is a great support.

I'm due back on Wednesday to repeat bloods so hoping this shows a further decline. I stopped bleeding on Sunday however today I am experiencing some discomfort so going to take it as easy as you can with two under 3.

I'm hoping someone can clearly state a diagnosis, we were given the booklets regarding ectopic pregnancy however noone has clearly stated yet - presuming because they couldn't locate any abnormalities on the scan.

Thank you again x

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