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Recent Ectopic pregnancy

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Justjen
Posts: 18
Joined: Tue Nov 13, 2018 3:57 pm

Recent Ectopic pregnancy

Post by Justjen »

Hello all, I am new to this so apologies in advance for any errors. Just had the methotrexate injection yesterday and thought i would share my painful emotions and if anyone has gone through this, any advice or success stories.

We recently got married in August this yr and decided to ttc straight away, so i stopped my pill mid pack. We got a bfp on 02/11/18. We were so happy not knowing a week after we would have the terrible news :(

I went to hospital last Wednesday (07/11/18) for a scan as i had mild pain in the left abdomen the day before but the pain stopped. After the scan, nothing in the uterus but they said i had a mass adjacent to my right ovary and might be bleeding. I had a pelvic examination (sorry not sure of the exact terminology) but i had no pian. They thought i had an ectopic pregnancy. I was admitted to hospital then last Wednesday as they wanted to carry out surgery. I wasn't in pain and was only 5 weeks then so they thought it might be early to see anything on the scan. Someone came in with an emergency in A&E, so my surgery was cancelled. I kept having hope thinking it's a sign, everything will be fine.

The following day i had my blood tests and my HCG levels doubled from 865 on 07/11 to 1637 but nothing was seen in the uterus again apart from the same mass which had now increased in size. They thought it could be a cyst but also possible ectopic.

They decided not to operate as i was still fine and no pain but was kept off food again and drink incase i needed surgery. They decided to take more blood tests. This time the levels didn't double up but just risen a little bit and my progesterone was low so this made them think it's ectopic.

So yesterday night (12/11/18) we all decided on the injection as i was not bleeding. I am now back at home.

I don't know how to feel. Keep thinking maybe if i was given another scan, something would have showed up. I find myself crying now and again and asking why this happened to us. My DH has been so supportive throughout, he was fasting with me in hospital when i wasn't allowed food or drink incase of surgery and has now decided to work from home this week.

I don't know when the emortional pain will stop. I am already worrying about our next pregnancy ending ectopic as well. I am thinking too much but our families have been so supportive.

Any word of advice how to go through this? I am also over thinking about the pain i will have once the medicine starts to kick in. I just worry over everything i am sorry.

Thanks for reading and sorry for the long essay.
Xxxx

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Recent Ectopic pregnancy

Post by EctopicPUL »

Sorry you’re going through this. Whilst there is a risk of another ectopic I think the stats on having another successful pregnancy within the next 18mths are really high too - I think 65%. I think (I’m not an expert) the overall chance of a second ectopic is 7-10%.

I’m on expectant management and had ridiculously high anxiety until I regrouped with myself and also got a little positive news.

One thing I had to remind myself is that the internet and forums are full of so many legitimate stories but often people who are also really struggling. Sometimes, it’s the worst case luck. It’s terrible for people who have many ectopic pregnancies and I’m not taking away from that but remember from where you are at, at this very moment, totally legitimately it happening again is your fear (and mine!) but for me, remembering whilst it increases your risk - the stats are still very much in favour of having a healthy pregnancy next time.

You are going to be okay but I also know what a state I’ve been in - which is why I couldn’t read and not reply.

Glad you have supportive family Xx

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

Re: Recent Ectopic pregnancy

Post by EPT Host 20 »

Dear Justjen,
I am so sorry to hear of your ectopic pregnancy and loss.
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.
We all feel pain at different levels, so please try not to compare yourself to others. If hCG levels are not doubling as expected, it is suggestive of an ectopic pregnancy and sadly this means that the pregnancy isn't viable.

It is normal to feel anxious about the future. We experience a mix of emotions from wanting to try again to being petrified of what may lie ahead. We never forget but we can learn to accept what happened. It is a slow process that might be weeks or months ahead. In time, we can get to a place where we feel comfortable trying again. When this is, is individual for each person. There is no timeframe for recovery, take each day as it comes.
Importantly early scans avail. As soon as you know you are pregnant, contact your local EPU to inform them and book in for an early scan at around six weeks. Remind them of your previous ectopic pregnancy. This self refer route is the best route in our view. Hopefully you will have some comfort to know you are under the radar of medical professionals right away.
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 following 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.

Please be kind to yourself, allow time to grieve, to heal both physically and emotionally.
Sending much love,
Karen x

**********************************************************************************************
If we have been able to help you, are you able to help us with a small donation or by volunteering?
Further information is available at www.ectopic.org.uk
Email us at ept@ectopic.org.uk.
Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).
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.
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Justjen
Posts: 18
Joined: Tue Nov 13, 2018 3:57 pm

Re: Recent Ectopic pregnancy

Post by Justjen »

Hi there, thank you both so much for the messages and supportive words. I am sorry for your past loses. I really can't wait for all this to be in the past.

Wow, you've really explained everything perfectly well and most of these things I wasn't aware of, like the effects of the medicine to our bodies after treatment.

I guess it's a matter of taking each day as it comes and stop over thinking through everything.

Thank you once again. For some reason i am not feeling as emortional as before after reading your messages. I think i feel better talking through what happened to us on here than to my friends.
Xx

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

Re: Recent Ectopic pregnancy

Post by EPT Host 20 »

Dear Justjen,
I also found that although well meaning, my friends didn't truly understand what I was going through.
Many women experience feelings of isolation after an ectopic pregnancy - I did, too. It is a frightening experience. Like you, I reached out to the Trust for support and we will be here for you to lean on for as long as you need.

Sending much love,
Karen x

**********************************************************************************************
If we have been able to help you, are you able to help us with a small donation or by volunteering?
Further information is available at www.ectopic.org.uk
Email us at ept@ectopic.org.uk.
Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).
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.
**********************************************************************************************

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Recent Ectopic pregnancy

Post by EctopicPUL »

My experience of ectopic has been a lot of waiting and ‘no news yet’, it’s hard to explain why I’m off work to friends etc but my head has been on this. I’ve found only people within this new realm I’ve discovered can understand. Use the boards, use the phone line. It’s all invaluable X

Justjen
Posts: 18
Joined: Tue Nov 13, 2018 3:57 pm

Re: Recent Ectopic pregnancy

Post by Justjen »

Thank you all for the support. Much love. Xx

EmmaG08
Posts: 1
Joined: Wed Nov 14, 2018 8:02 pm

Re: Recent Ectopic pregnancy

Post by EmmaG08 »

Hi...

Last year I was diagnosed with A Molar pregnancy so recently went to an early scan and was told I had pregnancy in unknown location. Had bloods taken which were low and was told to go back in 2 days for more bloods.

2 days later bloods hadn’t really changed another scan but still nothing anywhere so was told an ectopic pregnancy. Was having niggly pains on my left side and just deep down knew something wasn’t right.
After a long weekend of more tests and scans was told needed the injection on Monday...

Today everything has al hit me (it’s my birthday) and feel totally crap and just confused by it all.

They never saw anything on my scans so left me even more confused by the whole situation.

Sorry to read others story’s too know it’s just so surreal.

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Recent Ectopic pregnancy

Post by EctopicPUL »

I’ve never seen anything on scans either :( it’s very confusing and I hear you on your birthday - mine is next week. Weird way to spend your ‘big day’.

I’m 8 weeks along and they’ve never seen anything on the scan. The conclusion is that behind my little fibroid on my left side (thus obscuring the view of my ovary) is/was the ectopic pregnancy but s/he didn’t develop at the right speed also (low hcg) so they’ve never seen anything.

I found the whole PUL diagnosis really strange, some clinicians said I was having a miscarriage as I began bleeding others used PUL, others ectopic. I’m on expectant management - hoping the body will resolve itself, after 3 weeks of bleeding.

I’m with you on the surrealness of it all. I wasn’t expecting to be pregnant and had taken a test in a casual just in case kind of way, within 2 days was bleeding, and then 3 weeks in limbo land. It’s very bizarre.

I don’t know about you, but I feel until the medical urgency and procedures are out the way, I cannot process the emotions fully. For me I’m still waiting for bloods to go down and until that’s happened injection or surgery are still on the table so I can’t even think. Like you say, surreal.

I’m sorry this is how you’re spending your birthday. Sometimes, it’s a write off but give yourself some treats when you feel able. You deserve it after this experience! Such anxiety in the unknown.

Justjen
Posts: 18
Joined: Tue Nov 13, 2018 3:57 pm

Re: Recent Ectopic pregnancy

Post by Justjen »

Oh no, really sorry to hear about what you're all going through, even worse going through this on your birthday.

Happy Birthday Emma btw.

I felt that being in the unknown made everything worse. Was in hospital from last Wednesday (07/11/18) as they were not sure if i had a cyst or ectopic pregnancy. I kept having nightmares and on top of that i was put on a medical fast incase i needed surgery and was on a drip.

They finally decided on the methotrexate injection on Monday as my progesterone levels were low :(

Not felt any pain yet but I've been so weak since the injection. I am just praying for strength so i can have all this in the past.

We will go through ladies at least we're hear for each other.

Ps. Sorry, I don't know how to add a mention as i am new on here.

Sam4
Posts: 18
Joined: Sat Nov 03, 2018 11:35 pm

Re: Recent Ectopic pregnancy

Post by Sam4 »

Hi Jen.
I’m so sorry to hear about what you have gone through. I feel like everyone says it and ive said it a couple of times now but it’s true... you are not along. We are on the worst rollercoaster in the park but it will stop for us to get off soon.
I’m post op 17days, I still have a wobble emotionally on a daily basis but now I’m physically getting better it makes it easier to see that I can move on from it. I’m lucky I have a supportive Dh and DS 18 month so try to focus on that. You are just married so hopefully at the end of the year you can look back at that and this will only get a little look in. You’re (we’re) going to come out of this stronger and with all the stats in your favour to jump back on and try again...!
Sending love. Sam x

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Recent Ectopic pregnancy

Post by EctopicPUL »

This board is a lifeline. I’m going about my day intermittently checking in just to read and remember I’m not alone. I have no news for friends, my employer has been great but I feel guilty bc one day I feel reasonable, and then the pain and bleeding is back. The mental wobble means I’m just not up to doing my social work job at the moment. I feel until I know my hcg is going down for sure I’m still in this nightmare. My recent bloods did a good drop 54%, but I’ve previously had lows and then the hcg has shot back up. Weirdly since I passed some tissue the pains have been up, but the bleeding down. I guess my tube is in spasm and still trying to clear.

Every time the pain etc stops I think it’s over. Made the mistake of taking a pregnancy test when I KNOW hcg is still in my body, but I was still disappointed it was positive (as now I know the ultimate outcome, the most hopeful solution is my body deals with it without the methotrexate)


Limbo land. The same worry and the same concerns until the next anxiety provoking blood draw. My partner is long distance and this turn of events was unexpected. I feel he’s been affected by it but he doesn’t share and struggles to be vulnerable. This situation seems to have made a slight gap, that bit wider.

All kinds of uncertainty. I want my old life back. Strangely even though I know so many women go through the same thing, and so far I’ve had the least intervention of many people, just the weeks and weeks of bleeding and unknowns, the feelings surrounding an unexpected pregnancy and that’s miscarried anyway.... just, I don’t feel I’m the same person.

Strange and this possibly doesn’t make sense. It’s just been a shocking turn of events, and very lonely at times to do alone.

Sam4
Posts: 18
Joined: Sat Nov 03, 2018 11:35 pm

Re: Recent Ectopic pregnancy

Post by Sam4 »

Morning...
My husband is the same, never tells me what he is thinking. He did tell me he had a moment in the car park in the hospital and again at home after he left me, but it’s all because of me and what I’m going through and he hates that he can’t help.
I’m not sure if this will help you but a negative pregnancy test doesn’t come back till Hcg is 15... the nurse told me when my level was 16 and I was gutted.
I also struggle to be the same person and I so badly want to... I looked my due date up last night because I was thinking about it for so long plus it was like another answer ticked off in my head and one step closer to having them all answered. I try to be positive and some days I can’t decide if I am or if I’m pretending.
I can’t imagine what it must feel like doing this alone. We are here to talk to though so I hope you never feel it. X

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Recent Ectopic pregnancy

Post by EctopicPUL »

Thank you. I do feel for him, he suffers with depression in winter so this has been another layer.

I keep thinking the bleeding is over, i know it’s probably a good thing as on expectant management aiming for my body to clear out itself but waking up again to cramps again today I just want to cry. It’s so stupid but I thought it was over. It’s been weeks and weeks. Really just want to be ok for my birthday next week but it’s just not gonna happen.

I can’t seem to find an answer as to why with an unruptured ectopic there is this bleeding that seems to start and stop, varying from heavy to almost nothing. It’s exhausting after weeks. It’s my best friends birthday, she feels low and I need to whack on a smile for today but just today I am wobbling. Fed up of it all. I’ve been feeling pretty contained especially after a drop in hcg and an extentionn between hcg tests.

I don’t understand where all the bleeding comes from - this is not severe rupture bleeding, l can tell. It’s more like endless periods but that stop and start at various levels.

It’s a non-problem, and normally I could deal but every time it starts again, what it screams is “ITS NOT OVER!”

I just pray, absolutely pray my Monday bloods have gone down. After 3 weeks off work I’m meant to be returning Tuesday.

Moan over. I know I’m being stupid. I think the hormones are still driving me insane too.

Morgana
Posts: 4
Joined: Wed Nov 14, 2018 4:58 pm

Re: Recent Ectopic pregnancy

Post by Morgana »

I've been reading on the forum too to feel less alone. I had surgery to remove my left tube and ectopic pregnancy on Monday. I feel so sad and confused at the same time. I didn't think I was pregnant before the diagnosis, so at first I thought we were 'lucky' in a way that we didn't have to go through the incredibly difficult feelings of loosing a pregnancy, but now afterwards I do feel a sense of loss. I start thinking what could have been... We have been trying for 3 years with no luck and were about to start IVF.

I don't feel ready to talk to my friends because I don't feel they can understand. I don't fully understand my own feeling or why I cry all the time. And I never told them we wanted to have babies but it was not working as planned. People just don't realise these are sensitive topics when they ask us "No little ones yet?". I tend to avoid friends who have children and it has been a relief for me reading on the forums that other women do the same. I find all those things hard to talk about, even with my lovely family, but it kind of helps to write it all down here.

I wish us all strength to get through these difficult times and a beautiful future with lots of babies.

Thank you all for sharing your stories.

Xxx

Sam4
Posts: 18
Joined: Sat Nov 03, 2018 11:35 pm

Re: Recent Ectopic pregnancy

Post by Sam4 »

I didn’t get bleeding with my ectopic... well I did a pint and a half internally... I only spotted for a few days before and maybe had a couple of days after but I think that was just shredding from there no longer being a pregnancy. Have you mentioned it to the doctor?
I know you will probably hate to read it but I do think you need to stop being so hard on yourself, you’re still in the mist of it and it’s ok not to be ok... hormones are a freaking bitch, people who have giving birth cry after about 4 days because of the drop in hormones and unfortunately that’s what we have/had to go through as well. I have everything crossed for you that your bloods will be down. Please keep me up to date x

Morgana I was the same, didn’t know and I felt better about that (the embryo, the cluster of cells in the wrong place) but as the days went on I also started to feel the loss of a baby, then would feel angry at that and then guilty because I didn’t know, I spend ages going round in circles with emotions. I think we just have to take the good days with the rubbish days and accept that they aren’t going to be all positive at the moment. I hope you can have a positive day soon x

Sam4
Posts: 18
Joined: Sat Nov 03, 2018 11:35 pm

Re: Recent Ectopic pregnancy

Post by Sam4 »

I didn’t get bleeding with my ectopic... well I did a pint and a half internally... I only spotted for a few days before and maybe had a couple of days after but I think that was just shredding from there no longer being a pregnancy. Have you mentioned it to the doctor?
I know you will probably hate to read it but I think you need to try to not be so hard on yourself, you’re still in the mist of it and it’s ok not to be ok... hormones are a freaking bitch, people who have giving birth cry after about 4 days because of the drop in hormones and unfortunately that’s what we have/had to go through as well. I have everything crossed for you that your bloods will be down. Please keep me up to date x

Morgana I was the same, didn’t know and I felt better about that (the embryo, the cluster of cells in the wrong place) but as the days went on I also started to feel the loss of a baby, then would feel angry at that and then guilty because I didn’t know, I spend ages going round in circles with emotions. I think we just have to take the good days with the rubbish days and accept that they aren’t going to be all positive at the moment. I hope you can have a positive day soon x[/quote]

EctopicPUL
Posts: 249
Joined: Sat Nov 03, 2018 11:23 pm

Re: Recent Ectopic pregnancy

Post by EctopicPUL »

That actually really helped - when you think people cry at the drop of hormones after birth. I know it’s not as high but totally makes sense actually. Little light bulb moment there - thank you

Morgana
Posts: 4
Joined: Wed Nov 14, 2018 4:58 pm

Re: Recent Ectopic pregnancy

Post by Morgana »

Thanks Sam4, it really helps knowing that I'm not alone feeling these confusing feelings. X

Justjen
Posts: 18
Joined: Tue Nov 13, 2018 3:57 pm

Re: Recent Ectopic pregnancy

Post by Justjen »

Hi all. Really nice hearing other people's stories at least i don't feel so alone. In a way, i feel safe on here talking about what happened to us.

I am sorry for the loss and pain you're all going through.

So today i had to go back to the hospital to have my first blood check and my husband revealed his feelings to me finally as i kept thinking i was going through the pain by myself. He told me when he left me in hospital last week he broke down in tears coz he doesn't like to see me in pain n the loss. He said he tries to cover his feelings as he has to be the brave one in the situation, so men do get affected as well emotionally. He's been so supportive all throughout.

Anyway so the nurse just rang me to advise that my hgc levels have gone up abit. Felt like busting into tears then but she quickly calmed me down and told me it's normal for them to go up the first few days after the injection. So fingures crossed they've gone down on Sunday.

I am still overthinking about the future although everyone keeps telling me to keep postive but it's really hard.

I can't wait for all this to be behind us and we all have our beautiful babies in the future.

Thank you all once again for being there and sharing your stories. We will get through it.

Luv Jenet
Xxx

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