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Expectant management experience questions

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tribbles89
Posts: 2
Joined: Tue Feb 20, 2018 1:47 pm

Expectant management experience questions

Post by tribbles89 »

Hi

I am an IVF patient. We did our third transfer a few weeks ago. They suspected the pregnancy wasn't viable when i had a beta hcg of 122 rise 48 hours later to 177 (didn't double). then two days later it went down to 134. They told me I was miscarrying
3 days later I went to an early pregnancy unit for confirmation. My beta was 189. They confirmed an ectopic on an ultrasound. 4 days later it was 190. then now, exactly one week after diagnosis of ectopic at 189, it is 187. i would have been 6 weeks 3 days pregnant today

I am being expectantly managed. Can anyone please give their experiences of how long it took for their hcg to go down with such low levels? I cant believe its been a week and dropped only 2. At this rate it will be 94 days before it gets to 0. I have already had my period (with ivf when you withdraw progesterone support you bleed.)

Any experiences would be helpful. Feeling really inconsolable about how long i might have to wait before trying again. Ive had 3 years of infertility and I didn't think it was possible to feel worse than getting a negative pregnancy test but here we are.

Lily123
Posts: 18
Joined: Wed Dec 20, 2017 1:11 pm

Re: Expectant management experience questions

Post by Lily123 »

Hi there, I’m so sorry for your loss, especially after all you’d been though with ivf must be awful, I had my ectopic diagnoses late November, I was managed expectantly also, my highest level was 1000, which dropped to below 5 in 2 weeks, my ectopic measured 1.6mm, I blead for about 5 days at that time and only just got my 1st period now, 12 weeks usually they say 3 months to try again, keep your head up, and know that there is still hope love lily x

Superunknown
Posts: 2
Joined: Thu Mar 30, 2017 10:48 am

Re: Expectant management experience questions

Post by Superunknown »

I am so sorry. It took me about 5 weeks.

tribbles89
Posts: 2
Joined: Tue Feb 20, 2018 1:47 pm

Re: Expectant management experience questions

Post by tribbles89 »

Hi there

It's me again. For anyone reading up on this I just wanted to let you know that my ectopic was diagnosed at 5 weeks in the first week of February. I got the all clear on May 16th. It was a long horrible 3 1/2 months but it did resolve by itself and I didnt need surgery or the injection. x

weathervane
Posts: 2
Joined: Mon May 24, 2021 6:40 pm

Re: Expectant management experience questions

Post by weathervane »

Hi everyone,

Thanks for sharing your stories. I'll share my ongoing saga in the hope that it helps someone.

I was diagnosed with an ectopic at 5+4 12 days ago but I suspected something was up due to discomfort (like ovulation pain) on my left side a week before that. I just knew it wasn't right (a cyst perhaps) but had to jump through all manner of hoops to be scanned because I wasn't experiencing severe unilateral abdo pain or shoulder tip pain. Eventually I was scanned at my EPU and two experienced sonographers found a mass hiding in my left tube. Given I wasn't presenting as high risk (no significant pain, no free fluid) I was told I'd be managed expectantly. Here's my hcg levels:

14/05 hcg 74
20/05 hcg 970 (day I began to bleed - bloods done at A&E that convinced EPU to scan me the next day)
24/05 hcg 106
01/06 hcg ? (had bloods taken this morning and EPU haven't called me yet to let me know what's up)

Waiting for the bloods to come back between 20th and 24th was truly awful. I was so afraid it would go the wrong way and I'd end up rupturing a tube. It was such a relief to see they'd plummeted and that the expectant management route seemed to be the right way to go. It felt like a gamble with my hcg up there.

I bled for 10 days straight, with about 3 days being very heavy. I don't think I've passed a cast, but it was clotty at times. It's tapered off totally now and I'm hoping that's it. I'm still getting some twinges and I'm exhausted, but I wonder if that's a combination of declining hormones, stress, and blood loss (I typically only bleed for 3-4 days max during my period). I could sleep for a week.

I'm mildly annoyed by the lack of care. This pathway, while certainly not as traumatising as some, is hard work psychologically and it's naturally a tiring process, all made harder by an understaffed, overstretched NHS. I had to make a nuisance of myself by showing up at A&E when I had pain and bleeding. I was genuinely worried but if I hadn't gone, I wouldn't have had bloods come back at a high hcg level and I wouldn't have been seen by EPU until mid-June, despite my concerns (they had declined to scan me prior because they said they wouldn't see anything, which I understand); if my levels had continued to rise I would've been in serious danger of rupture and/or left with surgery as the only option. Since then, I've had to chase repeat bloods twice because they hadn't been ordered, I've been asked to come in on a bank holiday for bloods only to do as I'm told and find everything closed, and now I've simply not been contacted to explain where I'm currently at. I feel a bit lost and adrift.

Sorry this has turned into a bit of a rant, but it's stressful!

At this point I don't know whether I still need methotrexate and though I feel that's unlikely, I'm desperate to be told for certain things are still going the right way.

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