Unfortunately it was an ectopic - my experience

[snowitall]

Hi everyone. I always find that reading experiences makes me feel less alone so I wanted to share this story in case it helps anyone else on their TTC journey.

We have been trying for around 5 months but last month we really went at it. I got the faintest shadow of a positive on the 18th December which slowly darkened to a digital “2-3 weeks” on Christmas Eve. I hadn’t told DH yet and wrapped this up for a Christmas morning surprise.

Everything felt normal, lots of abdominal stretching feelings and pregnancy cm. Definitely more focused on the left side but not really painful just a little niggle on the side I had had sharp pains on during ovulation, so I put it down to that.

On the 28th Dec I had brown spotting, about a tablespoon size patch in diameter (not clotting or anything just a patch) and the cramps changed to feeling more like period cramps. I was utterly convinced this was the start of a miscarriage and cried a lot. The spotting continued for another day but then went away. I did a test and got an absolute dye stealer. We both had a chuckle about how dramatic I was, and put it down to tiredness from hosting the in laws for Christmas.

Then on the evening of the 30th I was so uncomfortable. The worst gassy feeling, couldn’t sleep on stomach or get comfortable in any position. Definitely again focused on one side but generally uncomfortable all over - felt like when I had stomach cramps from IBS, but niggles to the left. I felt like something was seriously wrong as surely this wasn’t normal? The brown spotting also returned.

On the 31st I called St Thomas EPU and they returned my call same day and booked me in for a scan on the 1st, which was 5+2. Happy New Year’s Day to us lol!

The appt at St Thomas was seamless, I was worried from all the news about the NHS, but they saw me within 5 mins of my appt time. They did a transvaginal scan and she was really rooting around in there to the left and right so I felt that it must be bad news.

Finally she had the result and found a mass in the right fallopian tube. My poor DH almost fainted in the room and I had to prop him up whilst sitting there with no pants on, just covered in a paper towel and lube jelly. I was completely calm as feel that I had already been preparing for the worst since 28th.

The nurse was absolutely amazing. We also saw the doctor who reexplained everything, she was also very empathetic. Really can’t fault them.

No one however can explain why I’m having niggles on the left side when it’s the right tube that is affected! The doctor actually said that there was nothing on the scan to explain any pain whatsoever, it’s so early. So I like to think that it was just my body warning me? I did double check that they hadn’t missed anything on the left and that we were all talking about “my” left rather than their left!

They tested my HCG and all my bloods and if the HCG is below 1500 they will “wait and see” which means HCG tests every 2 days to check that it’s going down. I didn’t know that this was an option but apparently a good % of ectopics can pass on their own but only if the HCG is low and dropping.

Both the Dr and the nurse seemed quite against the second option, which is the drug methotrexate, which is a chemo drug that stops cell growth. They didn’t say it outright but I got the distinct impression they would prefer going straight to surgery to remove tube if the HCG is over 1500 and rising.

I also learnt that they no longer remove the mass in the tube through surgery. During surgery they will eyeball the other tube and if it looks okay they’ll remove the whole tube containing the ectopic. They will only attempt to preserve the ectopic tube if the other tube looks bad. This is because the scar tissue that would be created in a preserved tube makes future ectopics much more likely.

Also, contrary to what I assumed, removing one tube only reduces your fertility by around 7-10%, not 50%! This is because the tubes actually can move between the ovaries! So your remaining tube can collect eggs from both ovaries.

Anyway, I’m writing this as we wait for the call today from EPU to let me know what my baseline HCG is to see what next steps are available. The nurse said that there was no structure to the mass, this could be because it’s early but also could hopefully be because my body has already recognised it’s not viable and is trying to end the pregnancy.

We hadn’t announced yet except to my mum, so I am dreading having to give her the bad news as she was over the moon. I am happy to tell all friends that I’m going through the ectopic now, but it really sucks having to deliver a bad news follow up after a happy announcement.

Anyway, these threads never seem to get many comments but I still wanted to share incase you’re going through it like me. Please always listen to your body, I am glad that I did :)

Sorry to hear about your loss 💐. Happy to hear you are being well looked after. Poor DH, it can be scary and make you feel useless standing around waiting while the person you love is in this position. Have you told your mum anything yet.

I know what you mean about delivering bad news after good as we had just told the in-laws earlier than we would have as it was our only chance to do so in person. Having someone to talk to for both of you would be good if there's lots of waiting.

I never know whether to say this or not as everyone's experience will be different and I don't know if it helps or not. I welcomed DS into the world 12 months after having my left tube removed after rupture. Probably pregnant at first attempt! I had no known issues with fertility etc prior to the ectopic. I did already have a DD who was just over a year old.

Hi @snowitall I’m really sorry to hear what happened to you. Thank you so much for sharing your experience though, it would certainly be helpful to me shall I go through the same thing. I hope things can be resolved soon and you can move forward. Take care x

I'm so sorry for your loss. When trying for DS2 I had a miscarriage (not ectopic) and it was horrible. Luckily I've got my two lovely boys now so in the end things worked out for us.💙💙 I'm keeping my fingers crossed that your. HCG results drop and you can avoid the surgery but, more importantly, I hope that you're blessed with a beautiful rainbow soon and 2024 ends better for you than it has started! 🌈

Thank you so much for the kind messages, they really do mean a lot - the kindness of strangers on mumsnet is astounding sometimes!

They’ve called back today and my HCG is 1900 which is above the threshold they mentioned yesterday of 1500. My discomfort has turned to a feeling of having a stitch in my abdomen and the tops of both legs hurt to walk, as if I’ve pulled the muscles. They’ve got me back into the hospital and will discuss next steps soon once a consultant is free.

Will update once I have more news for anyone else going through this now or in the future.

So sorry you are having to go through this Snowitall. Thank you also so much for sharing. Being armed with info and possible symptoms with things like ectopic pregnancy is really very helpful. I wish you a safe recovery and a happy future pregnancy xx

@snowitall, I'm sorry to hear that your symptoms are worsening and that HCG is higher than they would have hoped. I'm wishing you a speedy recovery ❤️‍🩹 and, when the time is right, lots of baby dust. ✨✨

Thanks all. The HCG test today has come back as 2700, so I am to go in tomorrow to discuss options. From what I’ve read, methotrexate is only really effective on low HCG (less than 1500) or plateauing/dropping HCG. So mine clearly isn’t that. I have a strong instinct towards surgery but will see what they say tomorrow.

Forgot also to mention that my mass was 16 x 15 x 14mm and progesterone was 79. I don’t know what the procedure is but I’m hoping I can get another scan tomorrow to check growth and whether anything is wrong/rupture is imminent. I’m slightly worried that they’ll just do another HCG test and send me home. I would much prefer a calm surgery to remove tube than an emergency situation post rupture.

I had dye stealers with my ectopic too a few months ago - which made me dismiss the pains as I thought faint tests, brown spotting, rectal pain and shoulder too pain were the symptoms and I had none ! Just a dragging pinching pain on left side. I had an early scan and was told I’d ovulated on the right so not to worry about the pain on the left - but it persisted and 3 days later a clear ectopic was seen on left side so the egg must have travelled from right ovary to left tube. I had methotrexate and it worked really quickly although I had intense cramps 24 -48 hrs after the injection to the point I thought it had ruptured so went back to hospital but it hadn’t

My hcg only got up to 700 at 5 weeks but the mass was 23x26 mm

@Itwasserious I’m so sorry for your loss, how are you now?

That’s so interesting that we both had niggles on the opposite side to the ectopic and dye stealers. Your mass was so big! Was your HCG rising or falling? Are you in the UK? I’ve had such mixed responses from the consultants and nurses at St Thomas EPU, the first set seemed not very keen on methotrexate at all but consultant and nurse in last two days seemed more positive. I do have a sense that I should follow my instincts but I’m also conscious that I’m so anxious to get back to TTC that I might be leaning more to surgery as that doesn’t have the 3-6 month wait.

it was 434 the first test I had then 530 then 660 then 555 then 701 so a bit up and down but once I’d had the methotrexate it was straight down and 2 weeks later back to under 5 so I was discharged, I still had the mass though and even had a private scan 8 weeks later and it was smaller but still there
I was seen at st Mary’s they were very good

@Itwasserious that sounds really nice and straightforward! Will you TTC again soon and if so is there anything you can do about the mass?

@snowitall I’m really sorry they’re not making a decision and just keep watching you for now, I hope they finally decide what to do before it ruptures x

Yes we are we had to not ttc for 3 months after methotrexate. I had been trying for 18 months before the ectopic I’d just had a HyCoSy 2 months before that showed tubes were clear so I really wasn’t expecting an ectopic it was such a shock

Hi, I just wanted to say I’m sorry to hear what you’re going through - I have been there, so know exactly what you’re feeling. In December 2019 we found my first pregnancy to be ectopic, I was put on “watch and wait” but it ruptured and I had to go through emergency surgery, it was a horrible
ordeal so can understand you trying to avoid an emergency situation. I was beside myself with worry about fertility following the surgery to remove my tube. But in happy endings, I fell pregnant two months after my surgery (with my DD who has just turned 3) and I now have a DS who is coming up to 5 months. Stay strong and positive, I really struggled and I wish I’d have listened when people said it would be ok 😘Let me know if there is anything I can share to help you x

Thanks so much @Bumble88 it’s great to hear positive stories xx

So, yesterday I came into hospital and they did a transvaginal scan straight away. The ectopic pregnancy was thriving and had started to develop a structure. I think initially they thought I was further along than I was as had dated from first day of last period, but I ovulate around CD20 - because of this I think they thought ectopic wasn’t developing properly for the dates but the little guy was giving life a great go after all. Kind of proud of him to be honest!

Because of the level of development, they were very happy to offer surgery - they did say that some women who were desperate to avoid surgery would still be given methotrexate in my case, but that the risk of rupture anyway was quite high - the risk would come from the ectopic pulling away from the tube if the methotrexate worked.

My priority was avoiding an emergency situation so I was happy with surgery in this case - it was good to have the decision taken out my hands though as less regrets or wondering if I’d made right choice/was being too hasty for surgery etc.

My surgery was scheduled for 6pm as I’d had an early breakfast but then no one had said anything further about being nil by mouth and we were waiting for hours after the scan, so I caved and ate a muesli bar at 12 - about 5 minutes before the doctor came to say I would be admitted that day and had I eaten? 😅

They admitted me right away and I was put on the ward within the hour. The theatre is shared with other departments so it’s a bit up in the air what will happen and obviously life threatening car crashes etc come first. At around 6:30pm the consultant came to let me know it wouldn’t be happening that night, she said it was best anyway as you’re better off with a well rested team than waiting until 10pm. But that of course if I deteriorated they have 24/7 ability to take me to theatre. Luckily they made the call to delay me just a little after dinner, so I was able to eat and not be nil by mouth for 2 days!

The porters finally came to collect me at 11am yesterday and surgery took about an hour. I was back on the ward and alert by 2.20pm and feeling good! It was slightly weird being wheeled on a bed through the hospital and using the same lift as normal people in for check ups etc. One lady mouthed “good luck!” To me which was nice.

The most painful thing about it all so far has been this random shoulder pain you get from the gas that they fill you up with to do the laparoscopy. The left over gas rises through the abdomen and presses on a nerve which you feel in your neck and shoulders and actually really hurts! The best way to get rid of it is walking but walking makes it worse in the short term.

I’m only taking paracetamol for the pain and feeling tender in the abdomen and moving very slowly but doing lots of little walks around to keep moving and avoid clots. Kind of treating the experience like I’m on a long haul flight - so pacing around my bed every hour or so.

The long haul flight thing is a good trick in general if you ever find yourself needing surgery. Pack everything you would take if you were flying to Australia - good sleeping eye mask, excellent ear plugs (the brand party plugs is amazing!), toothbrush, hand cream, eye drops, dry shampoo, your hairbrush etc.

Haven’t had debrief yet but hopefully that won’t be too long an wait and I’ll be discharged today.

I have to say I’ve had the most amazing care - 90% of the nursing assistants, nurses and doctors have been absolutely amazing and attentive and I have had to consent to every single aspect of everything, they’ve listened to me completely and have been really patient led - every drug is run by me and only given with my sign off. Every doctor who participated in the surgery came to my bed to introduce themselves, anaesthetist shook my hand. The process and risks have been explained to me about 500 times and they’ve always asked me to repeat what I know to confirm I understand what’s happening.

They’ve come quickly when buzzed and always been super kind and gentle with me. I’ve even enjoyed the food. The ward seems well staffed and well equipped, even though there is a strike on! So, the NHS is doing all right at St Thomas’s gynae at least :)

Thank you for sharing your story it sounds very similar to my ectopic one and my nurses and assistants were also fab and so supportive (especially as during covid so my
partner could not be with me) ❤️

Speedy recovery for you 💐