My story so far

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1

Hi all,

I just wanted to share my story so far. Hopefully it will help others to not feel alone and maybe help me too. There are lots of questions I have that still aren’t answered and maybe they never will be, but any advice will be very gratefully received.

I found out I was pregnant in between Christmas and new year. I was absolutely over the moon as I always feared I wouldn’t get pregnant, I think mainly because I had been on the pill years but was quite forgetful with it but I never got caught. I’m 31 now and had never fallen preganant before but this was our first proper ‘try’ since being off the pill in June 2016.

My partner and I were so happy to be pregnant. A few days after finding out my partner and I had sex and I Immediately afterward I started spotting when I used the bathroom. The spotting didn’t stop for 5 days. After day one I contacted the gp and went in for serum HCG tests they had doubled to 5000 after 48 hours. I was referred to the early pregnancy unit. By this time I was 6 weeks and 2 days. I had an internal scan and was told with no real empathy “there is no sign of pregnancy” get dressed and go back through to the midwife. All I could feel was confusion. I wanted to say so what’s this then? A phantom pregnancy? Was I ever pregnant or was my body playing some cruel trick.

The midwife then told me that I was having a preganancy of unknown location. I had no idea what this was and it never even crossed my mind that I would be having an ectopic pregnancy. When I tried to ask what it meant she said they can’t look in my tubes or anywhere else so can’t diagnose it as ectopic so class it as unknown. She went on to say that it would not be a viable pregnancy and that I needed to get my “head around it” before she took my blood. Anyway long story short I was given methotrexate. I only just made mark for that as the unit don’t allow it at levels of 5000 by this point mine were 4975. I read online that sucesss rates can depend on the size of the sac as well

As HCG levels? Does anyone know if this is the case? Is there a way this could have been found out?

After the injection I felt well for the first 7 days and my levels were dropping well. By day 14 they were at 498 and my LFT normal. Day 14 was the day I was admitted to hospital with internal bleeding. I was doubled over in agony, nauseous and almost passed out. I was treated with IV paracetamol in the ambulance which helped. I remember feeling very cold, and as though I couldn’t take deep breaths. My stomach muscles also seemed to take on a mind of their own! I was admitted to the surgical ward after having had internal and external examinations in a&e. The plan was to monitor me very closely through the night and operate in the morning via keyhole surgery to see what was happening. The consultant kept saying I was a very strange presentation as I was alert but had not had any bleeding down below but couldn’t understand why my tummy was so tender. They suspected a ‘tubal miscarriage’.

After surgery I was told they had removed 1.5 litres of blood from my abdomen and my entire left Fallopian tube. They told me there was a “very large” ectopic pregnancy in my tube that hadn’t rupture but had stretched so much it was forcing out bleeding.

I don’t understand why it was so large if my HCG levels had dropped so well? In which case do the HCG levels count for anything? Or is more the size of the sac that matters when considering the intial options for treatment?

I was also asked by several different doctors if it was a planned pregnancy, a few assumed it wasn’t. I don’t understand why this matters? But I have seen the other people were asked this.

I’m now 4 days post surgery and feeling generally well. I feel lucky to be alive and have such a wonderful support network in my partner and family. I haven’t really given my emotions a chance t get in and I haven’t thought about the fact that my tube is gone or about the baby that we could have had. I daren’t let those thoughts in but I know they will come and sometimes I burst into tears without warning! I am very scared for the future as many of the lovely ladies on here say, the fear of going through this again is a bit much to bear. But I know if we have a successful pregnany it will be the most special experience in the world. Sending love and hugs to all xxx

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Hey Jenny, my heart goes out to you, it sounds like you’ve had such a scary experience, such a totally unexpected shock. I hope it will feel better with time. Also I know it can seem like the future is now scary and unpredictable, even the worse unthinkable scenarios are truly not that bad. I’m saying this mostly for myself as well. I was just diagnosed with an ectopic pregnancy about a week ago, we started with expectant management but then ended up in A&E doing a laparoscopy which removed my right tube. That was my absolute worst fear, but now that it’s happened, I feel it’s actually not so bad. The operation went really smoothly, my recovery is going well, and my other tube seems to be working fine. The added crappiness of my situation is that this ectopic pregnancy resulted from an IVF cycle, which I did not even think was possible, but there you go. It’s a lot of disappointment in one fell swoop, but it’s far from over. I think it’s because my situation was monitored early and I didn’t have the trauma of a lot of pain - mine was a dull abdominal cramping and a little internal bleeding, but everything else seemed stable. IF this was to happen again - heaven forbid - I think at least this time I would know what was happening. So big hugs on making it to the other side and for being safe and recovering well. Sometimes the worst case scenarios are not as scary as we fear, and we find an inner strength that sees us through and gives us compassion. I just try to remind myself that we’re not in control of things, as much as we try to be, so why not relax and be kind to ourselves.

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Heyyy,

Thank you so much for sharing your story, I’m so sorry for your loss, it must feel particularly bad having gone through ivf but you sound very positive and like you say even though we think we couldn’t go through it again we can cope with more than we give ourselves credit :slight_smile: I remember being at the first scan and thinking that I wouldn’t know what to do if they told us something bad but I’ve surprised myself in how I’ve dealt with it and seem to getting on well, up to now anyway :slight_smile:

I can’t understand this unknown location thing, why cant they scan the tubes? I especially don’t understand it in your case with IVF?! How ridiculous! God I can’t imagine what you must have felt :frowning: xxx

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Hi, I to received no empathy and found it made the whole experience much worse, I am 2 weeks post keyhole surgery for an ectopic pregnancy apparently mine fell out into my abdomen and hasn’t damaged my tube so I should count myself lucky was the sort of attitude I got. Being a Carer myself I find it hard to deal with how I was shall we say mistreated.

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Hey Nic,

My gosh it’s such an awful experience isn’t it? Yeah me too, I’m a mental health nurse and at the time I was shocked at the attitude and kind of Blasé, just another case sort of an attitude but was so preoccupied with what was happening I didn’t give it too much thought. I was treated with surgery In Scarborough out of area for me as I was on holiday at the time. Scarborough were just brilliant and the more I reflect on the care I initially received at my local EPU the more disappointed I am by it.

But like you, I feel lucky. Lucky to have received such wonderful care at Scarborough and to have a loving supportive family. And of course, you ladies to confide in xxx

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Jenny3395 you know what it is we would never treat people like that, shameful that this happens when all we needed was some care at such an awful time. But onwards and upwards this site has helped immensely Xx

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Hey Nicwood,

You’re absolutely right! When I got to Scarborough for and ended up having emergency surgery the it was the gynaecologist and the surgeon who held my hand and stroked my head, telling me they would look after me and that I was in good hands. I can’t say how important this was and that caring nature will always stay with me.

This site is wonderful at bringing together support and has too, helped me immensely :slight_smile: you’re right onwards and upwards! I’m now 10 days post surgery and already I’m on the mend :slight_smile: xxx