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Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

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Agandz98
Posts: 5
Joined: Fri Jun 17, 2022 12:35 pm

Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by Agandz98 »

Hello. I wanted to share my story and worries to hopefully get some reassurance/advice.

After 2 years of trying, my partner and I finally got a positive result (first pregnancy). At the 6 week mark, I began bleeding and passing small blood clots leading me to be examined where my cervix was seen as open therefore I was told I had an early pregnancy loss. After a number of blood tests it was seen my HGC levels were very low but gradually increasing (51 to 61 to 96). I then had a scan which showed a very small mass outside of my ovary in my tube and a small amount of fluid in my pelvis so I was diagnosed with an ectopic.

I have had my first methotrexate injection yesterday but I am absolutely terrified my HCG levels will continue to rise which will lead me to needing a second injection or surgery (I am aware day 4 they may increase and it is day 7 which will show if the treatment is working). I am also intensely afraid of rupture of my tube leading me to being afraid to fall asleep incase I don’t wake up (I have not slept properly in days).

This mixture of severe anxiety over rupture, the outcome of current treatment/needing more treatment or surgery and the guilt/depression from the loss of my pregnancy has had a serious affect on my mental health and general quality of life. I can’t stop crying and it’s so hard to not let it consume my every thought.

I keep being told to be positive they caught it early, your HCG is very low and the mass is so small and that everything will be okay and sorted but all I’ve been told since I started bleeding is that everything will be okay but it hasn’t been ok at all, it all gone incredibly wrong so all I can think is that it is going to continue to go wrong and things are only going to get worse.

I am so so scared I will need more treatment or surgery, it’s completely terrifying me more than I can put into words. I want to have a baby more than anything in the world but this experience has changed me more than I can say it’s made me so scared of the future and my present outcomes, I am a shell of the person I was before this all happened and I don’t know if I’ll ever be the same again.

Thanks for reading.

EPT Host 20
Posts: 2564
Joined: Thu May 31, 2012 10:58 pm

Re: Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by EPT Host 20 »

Dear Agandz
I am so sorry to hear of your ectopic pregnancy and loss,
The diagnosis of an ectopic pregnancy can be completely overwhelming and I'm so sorry you are having to go through this.

I felt the same when I had methotrexate, not knowing what is going on with our bodies and fear of rupture is so difficult to deal with. As others have said your levels are low which is encouraging and I hope you will see a drop on your day 7 bloods.
I know it can feel like an incredibly long drawn out process but methotrexate was developed to be less invasive than surgery and there is no difference in future pregnancy outcomes between surgery or methotrexate.

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 (please remember to take folic acid supplements for 12_weeks after your hCG levels have dropped to pre pregnancy levels before trying to conceive again). 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.
Making the decision to begin trying to conceive is an emotional rollercoaster compounded by our sad loss. Again, you are not alone. We here emotional support whenever you need us. There is a specific Preparing for your Next Pregnancy board you can look at too whenever feel ready.

Ectopic pregnancy can be very isolating, these boards are filled with women with similar experiences and I found comfort by reading others posts as it made me feel less alone. We also have email and telephone support if you feel you would like more support, but we will be here for you on these boards for as long as you need. Above all be kind to yourself and allow time to grieve and to heal both physically and emotionally,

Sending much love and warm hugs,
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
***************************************************************************

Agandz98
Posts: 5
Joined: Fri Jun 17, 2022 12:35 pm

Re: Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by Agandz98 »

Hi Karen,

Thank you so much for your support and kind words, it means a lot to me that you took the time to properly read my long post and reply to each aspect.

It’s really encouraging that others have had a similar experience and feelings/concerns as me (such as yourself) so that has given me some reassurance.

Hopefully I will see the levels drop on day 7 (this upcoming Wednesday) and I can be rest assured everything is going hunt he right direction and healing.

Thanks again for your support x

Weez8
Posts: 3
Joined: Mon Jun 20, 2022 3:52 pm

Re: Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by Weez8 »

I was petrified my levels wouldn't go down enough and would have to get another injection. I lost sleep thinking about the possibility of surgery and any little twinge i felt from the methotrexate had me really in edge. I just couldn't remain calm and felt I was loosing myself a little.
Yesterday was my day 7 and my levels came down enough to not need another injection. The relief I felt. I know instill have a long way and am still at risk of rupture but knowing I didn't require another injection really lifted a little weight off me.
I have everything crossed for you for today and I am sending you lots of love x

Agandz98
Posts: 5
Joined: Fri Jun 17, 2022 12:35 pm

Re: Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by Agandz98 »

Update:

So on day 0 my levels were 96 then on day 4 it went down to 39 but now on day 7 they have gone up to 43.

I’m really scared and I can’t stop crying because I don’t want to have to have another injection or treatment. Still waiting for a doctor to call me with the plan moving forward but I’m absolutely terrified about what’s going to happen.

I feel really lost and alone.

EPT Host 20
Posts: 2564
Joined: Thu May 31, 2012 10:58 pm

Re: Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by EPT Host 20 »

Dear Agandz,
I am so sorry to hear of the worrying time you are going through.
I hope you have heard from your medical team by now.
Your levels are still very low which is good news, so they may want to repeat the bloods in a few days to see what is happening. They may however suggest another injection, but this really isn't too much to worry about. It may just be what's needed to make the levels go down and there is no additional waiting time to concieving. Whether you've had one or two methotrexate injections, the advice is the same, to wait until hCG levels have dropped to pre pregnancy levels and then take folic acid supplements for 3 months before ttc.
I hope this helps,
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
***************************************************************************

Agandz98
Posts: 5
Joined: Fri Jun 17, 2022 12:35 pm

Re: Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by Agandz98 »

Hi Karen,



I have been told today that I need to go back for a second injection. I am absolutely devastated and it’s left me feeling that the treatment won’t work and lead to requiring surgery as I feel I have lost hope that this never ending saga of going to the hospital, having bloods done and being given bad news will happen again and again. My mental health has really suffered throughout this experience and Im so tired of feeling lost and hopeless.

It’s interesting that you and the ectopic trusts website state whether it’s one or two injections that you can try to conceive again after 3 months as every doctor and nurse has told me it’s 6 months after a second injection. It’s left me feeling confused and worried about which is correct or safe. It also concerns me that if it is indeed only 3 months as to why the doctors/nurses say otherwise leading to me wondering if they are even competent to treat me at all!

Thanks

EPT Host 20
Posts: 2564
Joined: Thu May 31, 2012 10:58 pm

Re: Terrified methotrexate injection won’t work and lead to needing more treatment/surgery

Post by EPT Host 20 »

Dear Agandz,
I am so sorry to hear that you have to have a second injection. I am keeping everything crossed this works for you.
As far as the Trust is aware, there is no medical evidence to support doubling the length of time before trying to conceive with 2 injections. If your medical team do have medical evidence to support their decision making, we would absolutely love to hear it as we strive to provide the most accurate information we can.

I know this is a very anxious time, but your medical team will be looking after you and are keeping you monitored closely. I hope to hear good news in the next week that your levels are starting to decrease nicely.

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
***************************************************************************

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