Expectant Management for Ectopic - how long?

[Ecas88]

I'm on my second ectopic pregnancy. First on my left with surgery. This one is on my right, I'm currently wanting to do expectant management... my levels have been between 320-390 for the last 10 days.

Please, does anyone have stories on how long their expectant management took with an ectopic? What their levels were ect? Any ruptures?

Thank you,

I had expectant management for my first ectopic. I'm afraid I can't remember what my HCG levels were as it was over 15 years ago but I had between two to three weeks of monitoring with blood tests every 48 hours. Eventually the decision was made to give me methotrexate which successfully resolved it. I'm sorry that you are going through this

I had expectant management for an ectopic in 2020. I bled at 5.5 weeks but it wasn't discovered that it was ectopic until 4 weeks after that. At that point, my hcg levels were 320. It might not be what you want to hear but it took two months from then for a negative pregnancy test.
I'm so sorry you're going through this 💐

@Jobreveal thank you for letting me know 🙏

Did they push for you to do something because after 3 weeks your levels still remained static? Or did your levels end up going up? Could you have waited longer if you wanted to?

Xx

@neverwakeasleepingbaby thank you so much for your reply, I don't actually mind if it takes a while, if I have surgery it's likely 2-3month recovery, if i take the drug, its more like 3-4month before i can try again.

I just want to know that eventually it will go down 😪

Do you remember if you levels constantly dropped or did it stay static for a while before it dropped? Were you ever in pain? I've not been in any pain, just super anxious it will rupture at any point 😅

@Ecas88 I was never in pain, no. I did end up with a nagging ache on the side it occurred, which eventually resolved after my pregnancy with my son (which was nice).

My hcg levels dropped quickly initially (from memory, it was 320, down to 250ish, then down to 200 in the first week. I have no idea what they started at when I started bleeding because that was the month before! Something like that. And then the decline got very gradual. I think that's why they then spaced the blood tests out to each week, and then once a fortnight.
I think maybe my body was trying to get back to normal as my levels were dropping because I did have a sort of light period in the middle, and then once my levels were zero my periods went back to normal.

I do have a friend who had a similar experience but her levels dropped in 2-3 weeks, so I think it's really hard to say what is "normal".

It was my first pregnancy and I was in shock for most of the first month, and then when I realised it would take so long to get back to normal, I think I just felt frustration and grief. It's probably a good thing that you're asking for other people's experiences to set your expectations, because it really screwed me up for a while not knowing what was normal.

Hope it goes smoothly for you

Hi op, I had an ectopic earlier this year and went with expectant management as hcg wasn't doing much but after a few weeks it had been going up and down so they spoke to me about going with methotrexate or surgery.

I choose methotrexate as i didn't want to lose my tube. I did end up feeling like I should of had the methotrexate earlier because i had to wait for 3 months ttc again and the expectant management had just put more time on to that and I also had the worry with expectant management of it rupturing at any time as it can rupture with low level hcg too.

It is your choice but my advice would be to go with methotrexate as if your actively ttc then your putting your tube at risk of rupturing and loosing it also, the 3 month wait to ttc again would be far better than loosing your tube. I really didn't want the methotrexate because ofbhaving to wait to try again but after I'd had it i was quite relieved to see the hcg dropping and not have the worry of a rupture. I felt it was very draining and impacting my mental health quite considerably the longer it went on so was glad to have it over with to be honest.

I hope everything goes well for you x

Also my hcg never got above 200 but just was not shifting at all so in the end it was a case of enough is enough x

Thanks all. I ended up going into shock last night at around 8pm, my partner took me straight to A&E and I had emergency surgery around 11pm. They told me it was rupturing and their was blood in my pelvis. They removed my tube as they said it wasn't worth saving and told me the other tube didn't look healthy either and I should have that one removed as well as the risk of ectopic is too high now and i won't be able to concieve naturally anymore 😞 guess I'm glad I had the surgery as the anxiety is almost gone now and I wouldn't have known that my tubes were too far damaged to save, if I had chosen methotrexate. Just wish they removed the other tube last night, to save me going through surgery again. 😪

@Ecas88 so sorry to hear that OP 😔 Hope the recovery goes well. Take care of yourself 💐💐💐

Hi @Ecas88 I'm sorry to hear about what you're going through. I've had two ectopics - first on the left with methotrexate and the second on the right which was a rupture and emergency surgery. Physically I recovered quickly, mentally however took a lot longer. I felt quite lonely afterwards too, so if you want someone to talk to then I'm happy to be here and listen/support ❤️

@lemonyfox it's been really hard mentally 😪 . The first ectopic, I got over really quickly, almost counted it is as a blessing as I didn't want to be in the relationship i was in, let alone have a baby. Next time I thought about getting pregnant, i was with the person i wanted to be with forever and everything went well, I had my son and all the physical and mental pain from the ectopic pregnancy was a lost and distant memory. This time finding out I was having another ectopic and it was on the other side, felt completely earth shattering, it brought everything back from the past and a whole knew range of horrible feelings I'd not had before. I was so hopefully that I could deal with it by expectant management and things would just go back to normal but it didn't work out that way 😞 I've been left broken from it all. Constant anxiety attacks every day, full blown panic attacks which took me into A&E, and lastly experiencing a fit of shock for 2hrs before I had the emergency surgery. I thought the surgery would have stopped it all as well, but I'm still having anxiety attacks, I'm hoping they will pass with time but I have a feeling I've got a hard journey ahead of me when it comes to trying to get pregnant again. Did you ever get help/speak to someone? How did you manage to deal with it in the end? Are you all better now?

Oh love, I'm so sorry. It's a lot to process and I think it's made worse by how quickly things seem to go wrong with ectopics. Like 0-10000 in hours. I'm not surprised you feel all over the place. It's the 'why me why is this happening again' which I found the hardest to process, once is shit luck but twice is just devastating. And it's really hard to wrap your head around what the future looks like. Are you still in hospital? Did they say your other tube looks bad because of the first ectopic scarring?

I ended up taking two weeks off work which I'd really recommend. Probs should taken taken longer tbh. I felt like the first week was physical recovery and the second week was mental recovery. I cried every day, I spoke about it at length with my partner - bless him, he tries so hard to understand but I don't think they can really fathom the physical and mental impact, it's not the same for them. I told people about it too - family, friends - rather than keeping it secret. It helped to talk about it and have some sympathy, daft as that sounds.

I'm physically better now, my rupture was back in April so I'm about 11 weeks on now. Havent gotten pregnant yet, still cry about it most weeks, I'm debating whether to keep trying naturally or maybe consider investigations to see whether my remaining tube is even viable. IVF maybe, I dunno. I still have one (probably scarred) tube so the risk of another one is awfully high. It's depressing and soul destroying, but I still have my son (he's 2.5) and he brings me so much happiness. If we can't have more children then I do try and remind myself that he's enough, because I love him so much.

I finally made it home, i still feel anxious that something is going to go wrong but trying to just deal with it. The why me, why again, is the worst feeling, its like if this unlikely thing can happen to me, then all the other unlikely things are going to happen, i used to feel invisible to unlikely scenarios and now i feel like they are a certainty 😅. It's also hard knowing the only thing that will make the saddest and pain go away is to be pregnant again, which feels so far out of reach right now.

They told me the other tube looked stretched and wiggly 😔 the first consultant i saw after surgery told me to have it removed and do ivf, then the next consultant tells me, they can't tell if it works by looking at it, the only way to know it works is to try it out and see if I get pregnant.

I'm not sure I can go through another ectopic...although maybe next time it might be easier as my only choice would be to remove it as I'd know for definite it doesn't work. What did they tell you about your tube? Did they offer you any referrals afterwards? They said they would refer me for a hycosy but this would likely take 12-18months to get on the NHS 🤦‍♀️ but would be the next best step for me...I can't wait that long.

I know what you mean, my partner is the same, sympathic but also says its hard to fully understand as it not his body that's going through all this. (I kept asking him what he would do if he was in this scenario, in the hope it might help me make a decision) it didnt 😆

I count myself lucky for my little boy too (also 2.5 😊) they are both miracles to have navigated through shark infested waters and come out alive at the end. We really ARE still the lucky ones in the grand scheme of things. Xx

@Ecas88 aww I'm glad you're home, it's the best place to be.

They checked my other tube during surgery and they said it looked okay from the outside, but can't say how it is inside. I am considering a hycosy just for peace of mind but I'd do it privately, it's about £500. Im a little bit over the BMI limit for private fertility stuff though so I think we're gonna give it another month or two naturally whilst I get some weight off and then if no luck I'll start the ball rolling with private fertility investigations. I haven't got the patience or mental energy to deal with NHS referrals.

It does feel good to be home, but i still have the anxiety that something else might go wrong, hopefully that goes away quickly.

I think HYCOSY is definitely a good idea and worth the money if you want to try naturally. I think for me, my spirit's a bit too broken and time is ticking so I want to try something with hopefully slightly less risk and more certainty 😞

I wish you all the luck in the world in your journey ahead. Will be thinking of you whilst I go through the same.

Thanks for your messages, they really did help me to not feel so alone xxx

@lemonyfox forgot to tag you in the above xx

I'm glad to have helped, I'm here if you want to talk 😊 good luck for whatever you decide to do next, I'll be thinking of you too x @Ecas88

@Ecas88 really hard read going through your story. I hope you healed and managed to concieve again? ❤️🌈

@Ladybug320 thanks for thinking about me. I'm currently 34 weeks pregnant through ivf. Everything has gone smoothly with the pregnancy so far and hopefully I get a happy ending to my story soon. It's been a bit of a journey, with ups and downs but the pregnancy healed a lot of the trauma (which was really the only thing that could). The anxiety and panic attacks lasted for a few months but eventually did go away completely. Xx