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My Experience

This is a welcoming place for you to ask your questions and share your knowledge and experiences of ectopic pregnancy.
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KLou
Posts: 1
Joined: Sat Sep 26, 2020 9:52 pm

My Experience

Post by KLou »

I knew something wasn't right with my pregnancy from the second day after my missed period. I was "spotting" from this time and developed some low level pain a few days later - not specific to either side. I called 111 to check that it was all OK and spoke to a GP who said it was likely implantation bleeding and the pain was also related to this. This call provided some brief reassurance but still I remained anxious as I simply felt something wasnt right. The doctor I spoke to said that although all was likely OK- I would be eligible for an early pregnancy scan at 6 weeks. My husband and I planned to go to our local EPU on the Friday of my 6th week.

However the day before I was due to go my bleeding became worse and I started to develop more severe cramping. The blood was now red and there was more of it. I cried in the toilet at work as I thought I was miscarrying. I called the EPU that I was planning to go to the next day and they offered little help- they said to come in as I had planned the next day as they were a morning only service and now closed. I continued to get on with work, hoping that my fears weren't becoming a reality but the pain began to get worse and I was now developing pain on the right side of my groin. I work in a hospital and so i called the Early Pregnancy Unit there as I was in the building- i spoke to a nurse and described that I felt my pain was largely on my right hand side. Again I was told that they had no appointments available today but that i could come in tomorrow.

The pain at this point was getting worse but I managed to make my way home. Throughout the evening it got worse and worse and I decided to try and go to bed early but I couldn't sleep. My husband called a friend who came to bring me some codeine as by now the pain was becoming unbearable. By 5am I was wretching in pain and was on the floor unable to walk. My husband decided to call 999 for an ambulance after we finally realised that something was seriously wrong. The operator told him that I did not meet the criteria for an ambulance as I was still conscious and hadn't flooded 4 pads. They told him to call 111 instead. He called 111 and they logged the call and told him that a doctor would call him back in 1 hours time. He decided that this was unacceptable and that i needed to attend a&e immediately and so carried me (down many flights of stairs) to the car to drive us there- the ambulance service having let us down. When we arrived at a&e there were several ambulances parked outside waiting to be deployed...

A&E was luckily empty and so i was seen quickly by a triage nurse... pain- seems to be mainly on right side, bleeding more, pain level 8 out of 10 but I have taken codeine, no i havent flooded 4 pads but I am bleeding...

I was seen by an A&E doctor who told me again that as I hadn't flooded 4 pads that I wasn't eligible to see the urgent gynae team and that all they could do was give me more painkillers to make me feel comfortable and wait for the Early pregnancy unit to open at 9am. It was 6am now and so we waited.

9am came and they took me up to the EPU- my husband had to leave at this point due to covid protocols. I was lucky to have him with me to this point. There was a miscommunication between a&e and the EPU and they didnt have my name on the list of know why I was there. I was put in a corner for a while while they figured everything out. I felt dismissed and that i was interfering with their schedule as normally women must book an appointment with them.

I was eventually taken into a scanning room at around 9.15. A doctor took my details and i described my symptoms again. I laid down... I watched as the doctors face changed and knew that my worst nightmare was becoming a reality... "I am really sorry but it looks like your pregnancy is ectopic and there looks like there is a degree of bleeding and clotting" My world crumbled.

My husband was allowed back to see me for 15 minutes while the doctor and surgeons discussed what needed to be done. We cried and told each other that we loved each other.

Within the hour I was prepped and in theatre for an emergency surgery to remove my pregnancy. My tube had ruptured hey suctioned 1.3 litres of blood that had collected in my abdomen. I lost my baby and the tube was to badly damaged so I lost that too.

I spent the next 30 hours in hospital by myself as my husband wasn't able to visit me due to covid.

The whole experience was traumatic to say the least. But the most painful thing is that I knew something was wrong as early as 4 weeks and I don't feel like i was listened to. Even when it got bad - when I called up the two EPUs and described ectopic symptoms noone told me I should maybe go to A&E... later I didnt meet the criteria for an ambulence or for urgent gynae because I hadn't flooded 4 pads when I wasn't flooding pads because it was all leaking into my abdomen :(

If it had been spotted early enough i may have been able to save my tube but noone listened to me. Or I feel guilty because I should have shouted louder... I just felt something was wrong from the beginning and yet I let myself be reassured rather than pushing for more indepth investigations.

I cant fault any of the NHS team after my diagnosis- the anaesthetists, surgeons, HCAs and nurses were incredible. But i feel let down by everyone i spoke to before then :(

This was only 2 weeks ago- my incisions have healed but mentally I feel i have a way to go.

LD91
Posts: 6
Joined: Wed Jul 08, 2020 8:54 pm

Re: My Experience

Post by LD91 »

This sounds so much like what I went through. GPS telling me it’s a water infection, 3 rounds of antibiotics, all diagnosed over the phone. Bed bound, in pain, lots of bright red blood. Calls after calls- nothing. It got to the Saturday & I tried calling 111 but couldn’t get through so had to call an ambulance. Ambulance crew couldn’t figure it out either. 3 hours in majors & finally I get moved to the gynaecology unit. Within a minute of having that lovely internal scan I get told it’s ectopic & I need surgery immediately. I too was full of blood & the tube had ruptured so I lost that as well. Then 2 days in hospital, hurting & not even understanding what I’d been through. It’s so traumatic. It’s only when you’re home that it all sinks in. The system has failed both of us, it should never have got to that point. More advice & after care needs to be given too; it’s not ok that we have to go through this with no support & so many unanswered questions.
Mine was April & it still hurts to think about it all now, but I know I’m coping better. I just hold hope that one day my time and yours will come.
Sending a big hug from someone who’s been through it x

EPT Host 20
Posts: 1914
Joined: Thu May 31, 2012 9:58 pm

Re: My Experience

Post by EPT Host 20 »

Dear KLou,
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.
Ectopic pregnancy is notoriously difficult to diagnose however I am sorry you feel like you weren't listened too.
When you feel strong enough, you can take concerns about the care you received with the Patient Advice Liaison Service (PALS) within your local hospital. They will be able look at your experience and treatment and if learning needs are identified, carry these forward.

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. There is no timeframe for recovery and you will need space to process what has happened and it can feel isolating. 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.

Above all, be kind to yourself and allow time to grieve, to heal both physically and emotionally,
Sending much love and warm hugs,

Karen x

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MrsRoach2018
Posts: 4
Joined: Sun Sep 27, 2020 10:05 am

Re: My Experience

Post by MrsRoach2018 »

Thankyou for sharing your experience, it seems so very similar to what I have just been through also. Finding this trust I hope will give me some answers / help with what has just happened and also be able to talk to others who have been through the same, as i am finding that talking to people who havent been through this they dont quite know what to say and i wouldnt know what to say myself either so i understand that part of it. sorry you felt let down by the way you were looked after at the beginning too :(

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