Any help or advice appreciated x

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1

Hi, I’m new here, looking for a bit of reassurance, advice and guidance

I am currently 5w5d and since 4w1d I’ve been having a dull persistent ache low down in my left side and also a dead arm from my shoulder down. For the first few days I ignored it, putting it down to stretching etc… but something in my gut was telling me something wasn’t right.

So I called the EPU and explained what I was having and the asked me to come in that day for some bloods.

That come back at 40hcg, which I understand I low… so they called me back for more blood 48hrs later and it had risen but only slightly to 62hcg.

Due to the low increase, they called me in for a scan the next day… which was inconclusive (although it showed I ovulated from both sides and as they can see the corpus luteum both sides) I was advised I have a Pregnancy in an unknown location.

I’m called back 2 days later for more blood and it had again risen but only slightly to 89 :smirk: they then book me in for another scan 2 days later (5w3d) which again, comes back inconclusive. They take blood and again, only a slight rise to 100hcg.

The last scan also showed my lining has gone from 17mm - 10.2mm

And that’s where I’m at, my mind is all over the place, I’m emotionally exhausted and scared of what the next steps are.

I’m going back at 6w for another blood test but feel really fragile, like a ticking time bomb. I’ve been told to go to a&e if pains increase or I start to bleed - (I’ve had no bleeding so far) but feel so on edge.

After a yr TTC we are absolutely gutted… and I’m also scared.

I can’t fault the NHS- they’ve been great and I’ve been dealt with by lovely people, but It doesn’t make it any easier.

What happens if the same pattern shows with my blood and another scan come back inconclusive? What is the next step. I know I’m jumping ahead, but I want to be able to prepare myself and also give myself time to digest it.

Thank you taking the time to read my story, I appreciate any comments and advice you may have.

Send best wishes to you all xxxx

2

I understand your concern. I have just been through this.

I can only give you advice based on my experience.

See how your bloods go and your scan goes at 6w

You have 3 options

  1. wait and see. Some % (can’t remember) of PUL continue on to be “normal”

  2. option for medication (methotrexate) or 3. medical (surgery) treatment.

If your pain is bad and you have shoulder tip pain or are feeling faint or dizzy please go to EMERGENCY dept of your hospital.

3

Dear Guesthanson1,

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

Not knowing what is happening to our bodies can be extremely overwhelming and you have a friend here who understands. Whilst I was not diagnosed with a pregnancy of unknown location, I was admitted to hospital with a ? ectopic pregnancy on a Friday evening of a bank holiday weekend so I had to wait until the Tuesday to be informed that I was indeed having an ectopic pregnancy and it really was the most anxious wait.

It is important to understand that Pregnancy of unknown location - (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. Whilst I do not wish to alarm you, for every 100 pregnancies labelled as a PUL about 10 will subsequently be found to be ectopic; but not all of these will need treatment. If treatment is required, (methotraxate injection or surgery) it will depend on the results of blood tests and scans and I would discuss this further with you Dr.

I know you have been told to return if you get any symptoms and I would acho advice to seek urgent medical advice if you experience worsening pain, shoulder tip pain, or feel dizzy and unwell.

I am sorry that I cannot provide you with more precise details but I hope all becomes much clearer over the forthcoming blood tests and scans.

We are here for you for as long as you need,

Sending much love,

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 so much for your replies :heart: I really appreciate them.

I just thought I’d post a little update of what has been happening.

I went for blood on Friday 18th, which was 6wks and my HcG levels had gone up to 154. I saw a consultant who carried out another scan, which again was inconclusive and asked to return yesterday for another blood test. The result of that came back that my HcG is now at 379 and now I have to return for another internal scan tomorrow (xmas eve :pensive:)

Physically and Mentally Im exhausted and it’s taking everything I have to remain strong. I don’t know how long this will go on for?

I feel scared to go out, in case something happens when out in public.

Does anyone else have any similar journeys they would be able to share with me?

Thank you in advance and Merry Christmas xxx

5

Dear Guesthanson1,

I am so sorry this is dragging out for you.

I would strongly advise discussing how much this is impacting you emotionally with your medical team when you see them tomorrow. I I hope you get some answers.

Do continue to lean on us for as long as you need,

Sending much love,

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

6

I hope that your scan today goes well. X

7

Thank you so much again for your replies and good luck message :heart:

Unfortunately on today’s scan they have found a 9x9mm ectopic in my right tube and my hormone levels have increased to 620. Due to its size the consultant wants to wait for more bloods on Sunday 27th and if they have increased, a scan and they will more than likely administer Methotrexate on Monday.

It all feels like a bad dream if I’m honest. I need to do my research on methotrexate so I’m prepared. Again, if anyone can offer any advice, it’s greatly appreciated.

I hope whoever reads this has a lovely Christmas. Best wishes

K x

8

Hi,

I’m sorry you’re going through this. I ended up needing surgical management of my ectopic, so can’t comment on the methotrexate but try to be kind to yourself over the next few days, weeks and months.

Enjoy your Christmas as best you can. xx

9

Thank you so much Stephy. You too xx

I’m so sorry to hear you had to have surgery. I hope you’re recovering okay both physically and mentally :heart:

Sending lots of love and best wishes your way xxxx

10

I’m sorry to hear this… I wish it had been better news. Sending you love x

11

Hello Kelly, hope you are doing ok. Sending love x

12

Hi Lolly,

I hope you’re doing okay? I’ve been thinking of you.

I went for more bloods yesterday and they have now risen to 1140. I’m booked in for another scan today and after, they will be giving me the methotrexate injection :sweat: I can’t lie, I’m absolutely petrified but I’ve come this far and will have to keep pushing through.

I’ve spend the last few days burying my head in the sand a little and trying not to read too much, as it sends my anxiety through the roof… but at the same time, want to be prepared for whatever may happen next. It’s such an emotional rollercoaster and I don’t know what to do with myself to be honest.

Sending you (and whoever else may need it) lots of love :heart: xxxx

13

Good luck today Kelly. I hope things go as well as they can given the horrible situation. Be as kind to yourself as you possibly can and rest.

We are all here for you.

14

Hi Kelly, hope you are doing ok. I’m sorry that your blood results weren’t better news. I hope everything went as well as it can today. Rest up, take care of yourself. Remember we are here for you. Sending love x

15

Hi Ladies, I hope you’re doing as well as you can be? :kissing_heart:

So, my rollercoaster continues… after getting my blood back and psyching myself up for the injection, I attended my scan on 28th with a different consultant. He just seemed confused by my scan… as soon as he left the room, my partner told me he’d sensed it straight away.

He spoke to my normal consultant and they agreed they wanted her to re scan me the next day (yesterday). He said that he was surprised I’m not in more discomfort or pain than I am and questioned my dates. Although I’ve told them so many times, I know them like the back of my hand, as we have been TTC for nearly a year.

Fast forward to yesterday’s scan… my normal consultant showed us the ectopic, but also showed us something in my womb, which is stopping her from giving the methotrexate injection. She wanted to be sure that she is making the right decision… and doesn’t know whether she has found a failing pregnancy there? All the while, we are sent spinning further. I am struggling to explain how I feel. I’m grateful for the care that I’m receiving, but terrified at the same time.

The took my blood yesterday and the levels have risen to 1550, so no where near as large increase.

I am preparing myself for the injection tomorrow… however, my consultant keeps talking about the success rate and there still being a possibility I will have to have an operation.

I don’t know what to think and my emotions are all over the place.

I’ve had 6 scans and I’ve lost count of the amount of blood tests and I still don’t see a light at the end of it all.

It’s emotionally and physically tiring… I feel like my grieving hasn’t even started properly and I keep stopping myself from acknowledging that the injection is there to end my pregnancy - and that I am also losing my baby.

I don’t know if this is normal or if anyone else can relate to the feeling of almost denial that it’s happening?

As always, sending love and light to anyone else who needs it :heart: xxx

16

I’m so sorry that you’re still in limbo and that you’ve no answers yet.

I wonder whether you may have had a heterotopic pregnancy (this is what I had - unfortunately I miscarried the uterine pregnancy and then found out about the ectopic when scanned), but the consultant will hopefully be able to give you the answers tomorrow.

My understanding of methotrexate is that it is successful a lot of the time, certainly more often than not - the consultant will need to make sure you know what the possible complications could be though. Remember, you can decide which treatment option is right for you.

Lolly and I said yesterday that we’d both been holding onto hope right until the end, even though we knew deep down that there could be no baby at the end of it. I didn’t start processing it until a few days post-surgery. It will take time for things to sink in, and the grieving process to start.

Be kind to yourself, and I really hope for you that you get answers tomorrow so that your waiting can end.

Much love

17

Hi Kelly

I sounds to me like your consultant is trying to make sure you are not having a heterotopic pregnancy and giving you methotrexate when surgery would be better. I don’t want to get your hopes up but if it turns out that you have viable uterine pregnancy then they will do surgery to remove the ectopic pregnancy to save the uterine pregnancy. But it is rare that you will have a viable uterine pregnancy and ectopic at the same time, I believe.

I think its totally normal to try not to think about everything. It takes a while to process everything. I was just dealing with it one hospital visit at a time. One foot in front of the other, so to speak. You have to deal with it however you can.

Sending love x

18

Hi Kelly,

Just to say I’m thinking of you and hope you got some answers yesterday.

19

Hi Kelly. Hope you are doing ok x

20

Hi there,

Just wondering how things turned out for you?

Going through something similar at the moment and so worried!

Thanks so much for sharing and hoping for the best outcome for you

xx