1st BFP sadly Ectopic, Methotrexate today, confused & scare

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1

Hello all,

Sorry to everyone that’s dealing with EP at the moment. I’m currently going through it myself. Found out I was pregnant a week today. Initially told it was a PUL and possibly miscarrying, but yesterday’s scan showed a small mass of 9-10mm. Not to mention my hCG levels kept doubling since Monday. I’m 5w5d.

My hCG level today was 2300. The consultant was leaning heavily towards surgery even though I only had mild bleeding. I opted for Methotrexate as I was scared of having another surgery. Had a Laparoscopy for investigatory reasons in July 2018 and it took me quite some time to recover.

I had my first injection this afternoon. I am feeling so confused, scared and stressed…I’m wondering if I made the right decision today to go for the medication? I keep replaying the doctors conversation about how long it will take me to safely conceive again and how time consuming the medication route is.

I wanted to ask you ladies how long it’s taken to have your hCG levels come down? Also how did you cope in the coming weeks/months mentally, emotionally and whether you had a lot of physical symptoms.

Would really appreciate some feedback. I’m thinking the worst! If you don’t mind, can you tell me how many weeks pregnant you were, your hCG level at 1st injection, whether you needed a second one and how long it took for your levels to come down please?

Thank you x

2

Hey,

I didn’t have Mx, I had long winded expectant management. I’d say be mindful of your mental health and anxiety, the blood tests and protracted nature of it all can be very stressful. Schedule in some chill out time and be kind to yourself. X

3

@ectopicPUL

Hiya. Thanks for your reply. It’s funny you mentioned mental health. I suffer from Depression and anxiety and I am really worried this incident is going to have a huge negative impact my mental health.

Glad to hear your EP has naturally resolved. Keep your head up too xx

4

Dear Kitty2016,

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.

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. Please also do not be alarmed as 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.

Also reassuringly, 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).

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

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

The latest EPT newsletter is out now! You can take a look at the Winter edition 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

5

EPT Host 20:
Dear Kitty2016,

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.

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. Please also do not be alarmed as 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.

Also reassuringly, 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).

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

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

The latest EPT newsletter is out now! You can take a look at the Winter edition 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

Thank you for tour message Karen. Honestly I’m going through so much emotions right now. It’s a very difficult and confusing time. I think I may benefit speaking to someone on the phone one day. Do you provide that kind of service? If so, generally how long does it take to get through to someone?

Thanks again xx

6

I’ve had anxiety in the past and it definitely came up for me - ironically more so after the danger had passed. Since being discharged I think I’ve had more emotions that were previously blocked off when I was focused on hcg and blood tests etc.

I used the helpline twice - they’re super quick if you call and leave your name and number on voicemail. They will text or email you and ask when is good to call. I found they had lots of medical info I didn’t know and I just called and cried on second call lol not usually how I react or be vulnerable with strangers.

Avoid prenatal vitamins on Methotrexate (no folic acid etc) but I’ve found taking an omega 3 with a high DHA and EPA content has been helpful in my mental recovery. I’m doing everything I can to resume my new normal. Experiencing a depression for the first time in many many years which is, difficult. Just use all resources available and don’t underestimate the strain of this - there are loads of emotions attached when you have to submit to physical treatment like this.

On the upside I promise you, it all gets much better, you’re in the eye of the storm but you WILL be okay xx

7

Morning

It is completely normal to feel utterly confused during this time. I went from finding out I was pregnant to having MTX injection within a space of 10 days. What helped me was sharing what I was going through with my sister who is a trusted confidant (as well as my husband). The thing I struggled the most to understand is WHY. I kept looking for answers WHY, I posted on forums, contacted ladies who have gone through it etc and have come to that place that I’ve just had to let it go. Before this, I was going on a mental downhill spiral.

What is helping me is:

  • Constantly staying positive, there are things from this experience I’ve learnt about myself (and my husband) that I didn’t know.

  • We took a short 3 day break.

  • Keep busy: although I didn’t go into the office, I worked from home. I am doing lots of reading, and getting into Netflix!!

  • Prayer: If you’re someone who believes

  • Rest

8

Dear kitty2016,

Please remember that your feelings now are completely normal. Use the boards as a place to talk or vent as needed, we are here for you.

If you do feel you need further support, we at the Trust believe that talking through what happened and your emotions as and when you can helps the healing process. We operate a helpline service and there’s no pressure whatsoever but if you would ever like the opportunity to speak over the phone to someone who has been through a similar experience, do feel free to call, details are below. We can take things at your pace entirely and you are free to ask any questions that are on your mind. You can talk about the ordeal you have been through and express your feelings to vent and let off some steam. We can exchange emails too, if you prefer that route. We’ll simply be here for you, however you wish and for as long as you wish.

In addition, you can ask to see a GP at your practice and ask them to explore ways in which you can get help and this can include referrals for “talking therapies” or counselling. We have information on our website about finding counselling services.

The charity Mind may also be of assistance. They have local centres and support groups and can offer services on a means-tested basis or sometimes free. You can find your local centre following this link if that may be useful too: http://www.mind.org.uk/information-support/local-minds/

Sending much love and warm hugs,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

The latest EPT newsletter is out now! You can take a look at the Winter edition 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

9

EctopicPUL:
I’ve had anxiety in the past and it definitely came up for me - ironically more so after the danger had passed. Since being discharged I think I’ve had more emotions that were previously blocked off when I was focused on hcg and blood tests etc.

I used the helpline twice - they’re super quick if you call and leave your name and number on voicemail. They will text or email you and ask when is good to call. I found they had lots of medical info I didn’t know and I just called and cried on second call lol not usually how I react or be vulnerable with strangers.

Avoid prenatal vitamins on Methotrexate (no folic acid etc) but I’ve found taking an omega 3 with a high DHA and EPA content has been helpful in my mental recovery. I’m doing everything I can to resume my new normal. Experiencing a depression for the first time in many many years which is, difficult. Just use all resources available and don’t underestimate the strain of this - there are loads of emotions attached when you have to submit to physical treatment like this.

On the upside I promise you, it all gets much better, you’re in the eye of the storm but you WILL be okay xx

Hiya,

Thanks for your reply. I am trying super hard not to think about what’s happening too much as I know it will start to make me feel unwell. I was already in a fragile state of mind from how long we’ve been ttc. Even though I don’t feel like I am fully processing everything that’s going on, I know it will hit me properly one day…

I’ve taken omega 3 fish oil too before and obviously stopped it since the mtx injection. Was given the fo ahead from the doctor yesterday to take it so will start it again soon.

Will definitely give them a call one day for a chat xx

10

Glory:
Morning

It is completely normal to feel utterly confused during this time. I went from finding out I was pregnant to having MTX injection within a space of 10 days. What helped me was sharing what I was going through with my sister who is a trusted confidant (as well as my husband). The thing I struggled the most to understand is WHY. I kept looking for answers WHY, I posted on forums, contacted ladies who have gone through it etc and have come to that place that I’ve just had to let it go. Before this, I was going on a mental downhill spiral.

What is helping me is:

  • Constantly staying positive, there are things from this experience I’ve learnt about myself (and my husband) that I didn’t know.

  • We took a short 3 day break.

  • Keep busy: although I didn’t go into the office, I worked from home. I am doing lots of reading, and getting into Netflix!!

  • Prayer: If you’re someone who believes

  • Rest

Hiya,

Thanks for your reply. Our experience sounds similar, found out I was pregnant, then possibly miscarrying to ectopic/Mtx injection in 7 days! So much too process in such a short space of time.

I spoke to one family member about the EP and as supportive as she’s been, speaking to someone that’s never gone through it wasn’t that helpful to me.

I do pray and that has been helping me cope with it a little… xx

11

EPT Host 20:
Dear kitty2016,

Please remember that your feelings now are completely normal. Use the boards as a place to talk or vent as needed, we are here for you.

If you do feel you need further support, we at the Trust believe that talking through what happened and your emotions as and when you can helps the healing process. We operate a helpline service and there’s no pressure whatsoever but if you would ever like the opportunity to speak over the phone to someone who has been through a similar experience, do feel free to call, details are below. We can take things at your pace entirely and you are free to ask any questions that are on your mind. You can talk about the ordeal you have been through and express your feelings to vent and let off some steam. We can exchange emails too, if you prefer that route. We’ll simply be here for you, however you wish and for as long as you wish.

In addition, you can ask to see a GP at your practice and ask them to explore ways in which you can get help and this can include referrals for “talking therapies” or counselling. We have information on our website about finding counselling services.

The charity Mind may also be of assistance. They have local centres and support groups and can offer services on a means-tested basis or sometimes free. You can find your local centre following this link if that may be useful too: http://www.mind.org.uk/information-support/local-minds/

Sending much love and warm hugs,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

The latest EPT newsletter is out now! You can take a look at the Winter edition 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

Hi Karen. Thank you for your message. I will definitely get in touch soon. I really do need to speak to someone.

I had a call back from the hospital today. I had my day 4 blood tests done this morning. My hCG level was 2300 on Saturday and today it went up to 4100. They want me to urgently come in tomorrow to see the consultant, have a scan and consider surgery! I am over their guidelines for injection treatment which is 3000 hcg. So far I am symptom free. The bleeding I had from the 17th March stopped yesterday 25th March. All I’ve experienced so far is fatigue and very very mild abdominal cramping on day 2 and 3 after the injection and literally lasted a couple of hours.

I am really terrified of the possibility of my fallopian tube rupturing! Wouldn’t I have had more symptoms though by now if that’s going to happen? Can it still happen even though I am ok now?

I feel so stressed :cry: :cry: :cry:

12

Dear Kitty2016,

It’s a shame the hospital levels are 3000 for methotrexate as It is considered a good option when the ‘beta hCG’ level is below 5000 mIU/mL.

It is also common that 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.

I am not medically trained so would advise chatting things through with your doctor’s.

Although I do not wish to alarm you, sadly there is a chance of rupture with declining or low hCG levels, and we would advise taking things very easy, no heavy lifting, housework or exercise until your levels are below 100 mIU/ml.

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

The latest EPT newsletter is out now! You can take a look at the Winter edition 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

13

EPT Host 20:
Dear Kitty2016,

It’s a shame the hospital levels are 3000 for methotrexate as It is considered a good option when the ‘beta hCG’ level is below 5000 mIU/mL.

It is also common that 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.

I am not medically trained so would advise chatting things through with your doctor’s.

Although I do not wish to alarm you, sadly there is a chance of rupture with declining or low hCG levels, and we would advise taking things very easy, no heavy lifting, housework or exercise until your levels are below 100 mIU/ml.

Sending much love,

Karen x

The Ectopic Pregnancy Trust

Registered Charity Number: 1071811

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

The latest EPT newsletter is out now! You can take a look at the Winter edition 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

Hi Karen,

I hope there’s no change in my scan as last time the mass was only measuring 9-10mm which is quite small. I feel fine and my current physical health is stable so should be considered for a second dose of methotrexate. I just want tonight to be over so I can hear what the doctor has to say tomorrow.

Pray for me me guys xxx

14

How did it go? X

15

EctopicPUL:
How did it go? X

Hi. My appointment is at 12. I am so nervous :cry: :cry: :cry:

16

I have a different anxiety appointment 11.30. Think someone else is in a similar situation. You are going to get through this. Whatever the route you choose, you have got this. You will recover and there are people here who empathise and care!

By 1pm you will have a plan. You have the right to ask questions. You have the right to express your preferences.

I’m honestly thinking of you, I went to those appointments and I remember the anxiety and medicine every option feeling like the gallows due to my normal anxiety.

I promise. Whatever happens, you will be okay. Tell yourself. I am safe and I have choices.

Lots of love your way X

17

Not ‘medicine’ I meant EVERY* option feeling awful

18

EctopicPUL:
Not ‘medicine’ I meant EVERY* option feeling awful

Hi

Thank you for your kind words. I’m already home. I saw my baby for the first time today… :cry: :cry: :cry: it measured 5w4d. No heartbeat, but the pregnancy appears to be developing. The moment I saw it, everything just stopped. I couldn’t even hear what the doctor was saying. I literally had to compose myself and ask him to repeat everything he said. They’ll have to keep a close eye on me due to my levels going up by double of the expected amount. He gave me my options, told me to think about it, and to come back again on Friday for a further scan and 7 day blood tests.

I don’t believe I fully acknowledged my pregnancy before. Seeing my baby for the first time today brought me so much sadness and pain. Hearing that there was no heartbeat, I feel like I contributed to that by having the injection…

19

Big hugs. It’s A LOT to take in. I think I was blessed a fibroid blocked the view of mine.

You didn’t contribute to this at all though. You had no choice. Also, you saved your own life. You’ve saved the life of the mum of the baby that will be in your life in future. You had to do that.

I don’t know you but you will be a friend, a girlfriend or wife, potentially a sister or daughter or cousin or neighbour. You saved the life of that person.

A sad, awful, terrible thing, but you had no choice, and you bare no responsibility. Even if you didn’t have the injection, the outcome would be the same.

The layers of emotions are horrible and I’ve had real conflicting emotions myself too. But from the outside I promise you, you hold no responsibility at all.

X

20

EctopicPUL:
Big hugs. It’s A LOT to take in. I think I was blessed a fibroid blocked the view of mine.

You didn’t contribute to this at all though. You had no choice. Also, you saved your own life. You’ve saved the life of the mum of the baby that will be in your life in future. You had to do that.

I don’t know you but you will be a friend, a girlfriend or wife, potentially a sister or daughter or cousin or neighbour. You saved the life of that person.

A sad, awful, terrible thing, but you had no choice, and you bare no responsibility. Even if you didn’t have the injection, the outcome would be the same.

The layers of emotions are horrible and I’ve had real conflicting emotions myself too. But from the outside I promise you, you hold no responsibility at all.

X

Thank you for your kind words.

In my hospital bed while typing this. During my scan this morning I was told even though the foetus hasn’t grown in size since Day 5 of MTX , it’s now showing a heartbeat (cardiac activity) which wasn’t there before. They admitted me and are recommending surgery management. I asked what about my hCG 7 day results (which we’re still waiting for), they said unless it’s gone down by over a 1000 (which they don’t believe it will) my only option would be surgery as the Methotrexate obviously isn’t working and my levels are too high for medication management. They said as my pregnancy is developing, currently it’s a ticking time bomb.

I am so upset and scared. I really hoped it wouldn’t have come to this. I feel so helpless and devastated by the recent events.