Never heard a story like mine

[Morganecdn]

Hello,
My journey with ectopic pregnancy has been so confusing I felt the need to share it here and see if anyone had a similar experience as I’ve never read a story similar to mine.
At the end of September, I started having pain and bloating in my lower abdomen with some spotting. After a few days I went to A&E. I had a copper coil inserted at the time and thought it was out of place and hurting me. In A&E I was told I was pregnant. I already have a 3yo and my partner and I wanted to start trying for another baby early 2024 so I felt like our prayers had been answered early.
Got a scan on that day and they said it was a pregnancy of unknown location as they couldn’t find it in my uterus or elsewhere. It showed I had a bit of blood in my uterus.
I was sent back home and waited a couple days to have another blood test. The results took 3 days to come back, they went from 280 to 320, so not doubling as they should.
I was told to come back the next morning for more blood test. I felt gradually more unwell and felt something was really wrong. Deep down I knew it was ectopic even though the diagnosis wasn’t made yet and no options had still been offered to me. After my blood test I said I refused to wait again and be sent home. I stood up for myself and saw another doctor.
Along the way of all these tests I asked at least 3 doctors if rupture could happened as we were awaiting for more results or tests and they all told me that this would not happen with such low HCG. I requested another scan to which the doctor agreed reluctantly and that’s when we found out my pelvis was filled with blood and my right tube had ruptured. The pregnancy was hiding behind my right ovary which is why it was so hard to see on a scan. I was sent to emergency surgery that same day. I don’t even want to start thinking what could have happened if I had listened to the doctors and went back home that day…
My right tube was removed, I was also told that mild endometriosis has been observed on my intestines and pelvis. I had a mostly uneventful recovery, and actually recovered really fast. I was able to go pick up my daughter from nursery and walk about 40min within a week of my surgery. Around 14 days after surgery I felt pain again in my right side where my tube had been removed, I went to see my gp who said everything looked really fine and that I was recovering really well.
After my surgery I was told I would have a follow up on 27/10. Organised everything and went to the hospital with my partner only to be told that this was “paper clinic appointment” and that it was just a day when my results would be reviewed by the team but not a face to face. I was disheartened and felt like the medical team had let me down again. They accepted to give me a follow up a week later.
That was yesterday, when my world was turned upside down again. My partner wasn’t able to come this time around but I felt confident going on my own. I just had questions about the surgery and about conceiving etc. I felt absolutely fine. I was ready to close this chapter and move forward.
We did a urine test and it came back positive still. I haven’t resumed intercourse so I knew it was from the previous pregnancy. They told me that the result from the mass they took from my ruptured tube was in fact a blood clot and not a pregnancy, so that the pregnancy had remained in my body the entire time!! I had a panic attack on the spot and had to get a long painful scan. They told me everything looked healthy and fine but again the pregnancy couldn’t be found anywhere. There was just some kind of a mass on my right ovary on the side where my tube had been removed. I had to wait 3 long hours to receive result from my blood test to see if hcg had remained the same or increased from than the day of the surgery a month again (560) and go again into emergency surgery or that they decreased that would indicate that my body would be resolving the pregnancy on it’s own. Turned out my result came back as 66 meaning that my body is still in the process of re absorbing the pregnancy. I have another blood test at the hospital in two weeks to make sure it’s come down to 0.
I’m honestly so stressed that somehow something was missed again and that I’ll need surgery again or that my life is threatened again because something was missed. Every little thing I feel in my lower abdomen sends me spiraling into worry… they told me to come back in if anything was wrong but I’m just constantly anxious. It feels like being to square one all over again when I thought I would just close this painful and stressful chapter…
Any words of encouragement or similar experiences would be welcomed.
Sending strength to all of you xx

[EPT Host 20]

Dear Morgan,
I am so sorry to hear of your ectopic pregnancy loss. From your own words I can only imagine what a frightening experience this must have been and I am so sorry you have to go through this.
We would generally say that a rupture when your hCG levels are declining and below 100, is really rare, but this would never detract from you seeking urgent medical advice with any worsening symptoms.
Ectopic pregnancy can be difficult to diagnose at times, especially if it is difficult to spot. I presume your surgical team thought they had removed the pregnancy but only after with further investigation of the material removed did they know it was a clot.
I am very pleased to hear you stood up for what you knew was right and got scans and investigations as needed but I am sorry to hear that you had to fight for them in the first place. When you feel strong enough, if you have any questions about the care you received, I would advise speaking to the Patient Advice Liaison Service (PALS) within your local hospital. They can look into your notes and the care you received and answer any questions you may have.

You have been through such an ordeal in a really short space of time. He kind to yourself and allow time to grieve and heal 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
The EPT is awarded the PIF TICK as a Trusted Information Creator, the UK-wide quality mark for healthcare information
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