My Story

I’m only a few days post- laparoscopic salpingectomy for a ruptured ectopic pregnancy and don’t know how to feel. I wanted to write it all down and let it out, regardless of whether or not anyone reads it. It’s more for me to process what has happened. (And is quite long)

I contacted the early pregnancy unit on 11th December following what appeared to be a miscarriage the night before. The nurse I spoke with was sensitive and gave me the next available appointment. She explained that I would have to come alone due to Covid-19 restrictions and apologised for this.

I attended my appointment with L on 13th December. Everything was explained as well as what the next steps would be as I had a “pregnancy of unknown location”. L and her colleague, whose name I can’t remember, acknowledged that I had likely miscarried and that this would be a difficult time. L called me a few hours later to explain that a repeat blood test in 2 days would be more appropriate than a scan. I will be eternally grateful to her for making this decision.

I returned to EPU on 13th December for follow up bloods and began feeling unwell. R was fantastic and was able to organise a scan with A (gynae unit) who I couldn’t praise more. She explained to me what was going on and talked me through what she was seeing on the screen. Whilst this was difficult as she felt this may be an ectopic pregnancy, I felt informed and understood that if this was ectopic, the pregnancy was not viable. This was in comparison to Sunday when I was waiting for an hour to find out what was going on and the results of my scan. I asked whether this could have been a twin pregnancy as I had passed a gestational sac a few days, and was told that heterotopic pregnancies were very rare and at that point, it was not possible to tell. It seems that from this point onwards, an ectopic was virtually ruled out.

Unfortunately, after seeing A, things started to go downhill in terms of the quality of care. I spent hours, in increasing pain, sat in the waiting area not knowing what the next steps would be, other than that I needed to see a consultant. When I eventually saw them, we agreed that I would be admitted for a short period for observation. I was moved to Ward 1 after a further wait. It was not until I asked at 9:30pm that I was told I would be staying overnight. At this point, I did not know what was happening with my pregnancy, whether I was still pregnant, whether I indeed had an ectopic pregnancy or whether I would need surgery.

I can honestly say that my time on Ward1 just added to the trauma that I was already experiencing. I had a number of nurses ask me how many weeks pregnant I was. This should have been very clearly documented in my notes and at that point, I did not know whether I remained pregnant. I also overheard one nurse saying “she’s losing her baby very, very slowly”. This could be heard by the entire bay. My heart rate was high, but despite me having explained that whilst I do have a naturally high heart rate, it was much higher than usual, I kept being told that this was my “normal”. At one point, I was shaking with pain, given oramorph and then left for a few hours. During this time, I could have experienced a ruptured ectopic which could have been fatal. Despite having requested on 4 occasions that I be given my psychiatric medication, this was not done throughout the admission and I do not believe it was ever written up. One nurse even told me that there was no record of my being on any regular medication in any of my notes when I had been very clear about this - I’ve been on it for 10 years!

On the night of 15th/16th December, further concerns were raised; despite patients in my bay using their buzzers for pain relief or bed pans, there were 3 occasions when it took between 10 and 15 minutes for anyone to respond. This resulted in one patient becoming soaked in urine when she slipped off her bed pan. I also spent 5 minutes on the floor unable to walk back from the toilet as I felt nauseous, weak and dizzy. I did not expect immediate help, but the wait was an added stressor. I had no patient wristbands until the following morning and saw a patient given medication that she had been told earlier in the day she no longer required. She felt unable to challenge this. Despite being due painkillers, and requesting these, I had to wait for over an hour, crying and shaking.

The following day, I was waiting to be seen by the gynaecologists to discuss next steps. I was later told by a nurse that they hadn’t known that I was admitted or which ward I was on. Hard to believe given that I was seen overnight by one of the team and had been admitted by the gynae team. When I was eventually seen, I was told that I could either go home and return the following day for blood tests, or stay for another night. I was advised that there was minimal risk of rupture and this may not be an ectopic pregnancy. I had asked on multiple occasions to see the scan report from 13th December and whether it had been compared to the report from 15th December. This question was never answered and I was told I could not see my scan report. No reason was given.

Given that I was totally alone, on a ward where there were no staff who were able to tell me what was happening or answer any questions that I might have; the doctors not answering the questions that I did have (I understand the gynae ward is currently being used to treat Covid patients), and where I couldn’t see my husband, I chose to go home. I was told that I would receive a call with an appointment for the next day. That call didn’t come through until 7:40 the next morning, asking me to be there for 8:30. I live 40+ minutes away and was unable to drive myself due to the pain and being under the influence of strong pain medication.

Again, I spent most of my day waiting for test results and found out that my HCG had increased despite a drop the 48 hors before. The nurse advised that I may need surgery. When I was eventually seen by the consultant, there was again, little clarity about what might be happening, other than that I had a non-viable pregnancy. I feel that I was given a very short period of time to process what was happening and make a decision; one which I had to make alone because my husband couldn’t be with me, and whilst I was under the effects of strong painkillers. I chose surgery. I barely remember the conversation. What I do remember, is being asked what I would like to be done with the remains of my baby. There are no words to describe how it feels to be asked that question, even more so when you’re scared, in a lot of pain and alone.

I was told at 4pm that a bed had been allocated and should be ready soon. The same was said at 6pm and 7pm. I was eventually moved to Ward 2 just before 12pm because a bed had “just been found”. I had a very different experience with the staff on Ward2 who were caring and compassionate. S stood out, particularly when I returned to the ward after surgery and had asked the nice nurse, A from the gynae team to explain what had happened, as I had still not been seen by the surgeons. A was helpful, although I did struggle to absorb much of what she was saying. I just remember feeling reassured and that my loss had also been recognised rather than just my physical wellbeing.

It was not until I read my discharge paperwork that I found out my right fallopian tube had ruptured and it remains unclear whether I received any blood products. I also do not know whether a surgical evacuation of my uterus was completed. I am assuming not, but it would’ve been nice to know.

I have had to try to explain to my husband what was going on whilst not fully understanding or knowing myself, the most difficult thing for me once I knew what was going on, was the lack of acknowledgement that I had lost my baby.

I never had a scan that showed a live baby in my womb. The only physical reminders that I have of my first pregnancy, will be three scars on my stomach, some discharge paperwork, and a leaflet explaining ectopic pregnancy. The memories and trauma will last much longer.

I don’t know when my baby will be cremated by the hospital; it may have happened already. I have had to seek out my own support online and buy an acknowledgement of life certificate to have a way of recognising that I did have babies who couldn’t survive. I was certainly not given any information or support around bereavement.

I am now at home, grieving for my babies. Feeling guilty that one of my babies is being cremated and the other ended up in the toilet because I didn’t know what to do with it. Recognising that my fertility has been affected. Recognising that I started bleeding and had I not been in the hospital I could have died. Still having pregnancy hormones circulating, in pain physically and emotionally. Angry with the world when I’m surrounded by friends who have just had babies or are pregnant - one would have been due the week before ours.

And then being thrown into tier 4 just before christmas so I can’t even see my mum or other family members.

I feel everything and nothing.

Hello Stephy. Thank you for leaving your story. I didn’t want to just read and run. I’m sorry you have gone through such a traumatic experience. I know what you mean about feeling everything and nothing. I feel quite detached from my emotions right now too. Anyway, take care of yourself: rest and recuperate. Sending you love x

Dear Stephy,

I am so sorry to hear of your ectopic pregnancy and loss. You have been through a huge amount in such a short space of time and it is very normal to feel overwhelmed. From your words, I can imagine how frightening the experience must have been and I am sorry you have had to go though this.

Experiencing an ectopic pregnancy is a huge ordeal and you are in the early stages of recovery. Your body needs time to heal from your surgery which is in itself a gruelling task. You have also had to process the loss of your baby and been through an immense rollercoaster of emotions - all of this will take time to come to terms with.

You should take it very easily for about six weeks after surgery. Your body will be using its energies to heal internally. It is normal to feel physically and emotionally exhausted during this time and please do be kind to yourself. Recovery can take time and some days will be better than others, one day you maybe ok and the next you maybe in discomfort or more emotional. This is perfectly usual and the healing process will go back and forth in this way for however long you need. It is important to listen to your body’s signals and pain and feeling tired are your body’s signs to tell you to rest. We suggest keeping a healthy balanced diet, drinking lots of water and resting. Once your wounds have healed, very gentle exercise such as a short walk can help, but please do take this slowly.

We hear from many women who struggle with news about pregnancy from their friends and families. This is very normal and I was the same after my loss. When I had my ectopic pregnancy I had to attend a family function and a close family member was heavily pregnant. I spent the whole day and evening avoiding her as I found it too hard to be near her. It’s what I needed to do to get through the day and have some space and please protect your heart in whatever way you need. This does not make us “bad” people and it is possible to be happy for those around us while grieving for our own loss. Pregnancies and babies can be a very stark reminder of what could have been and it can be painful. Please do be gentle with yourself and you can talk to us whenever you need.

Based on what we hear from others, women are not automatically told as to what happens to the baby once it has been removed after the surgery. Doctors will have focussed on you and done everything to save your life and to make sure your surgery and recovery goes smoothly. Many women never ask, maybe because it is too painful, or maybe because they try and focus on their own recovery. And for some, like yourself, these questions are asked and decisions made when we are dealing with a lot of information suddenly. You are absolutely entitled to ask the question about what happened to your baby. Every woman handles this differently.

There are several guidelines for medical professionals to follow regarding the sensitive treatment of your baby. As a result, many hospitals have adopted arrangements with local crematoria for the sensitive disposal but they are guidelines, and procedures vary from hospital to hospital.

We recommend that for local information about your hospital, you contact the Patient Advice and Liaison Service (PALS) department and ask what the hospital policy is on the sensitive disposal of foetal remains.

You can speak to someone in the PALS team about what happened and they may be able to help with answers or a way to find answers.

If you feel this is appropriate, the hospital chaplain will do whatever they can to accommodate your needs in relation to your honouring your loss. They will almost certainly have a baby loss service of some kind and you might also like to see what the Baby Loss Awareness Campaign has organised in your area for the next celebrations and acts of remembrance.

You have many unanswered questions about the care you received in hospital I would advise speaking to the Patient Advice Liaison Service (PALS) in your local hospital who will be able to review your medical notes and discuss your concerns with you.

Above all be kind to yourself and allow time to grieve, to heal both physically and emotionally. These boards are a safe space to share, ask questions, or to vent. They are filled with people who have been through similar experiences and journeys, and we are here for you for as long as you need.

Sending much love and warm hugs,

Karen x

The Ectopic Pregnancy Trust

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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.

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Thank you Karen, I’ve found these forums to be a really useful source of support and information.

I emailed PALS last week but no response as yet. I’m trying to remember that it was bank holidays etc. From what I could see online, the cremation may have taken place on Thursday. I wouldn’t have gone due to Covid and just not being able to emotionally deal with it, but I was thinking about my babies. I didn’t realise they could also talk me through what had happened. I’ll contact them again about that, so thank you.