Pregnancy of unknown location experiences?

[affecting_meg]

Hi guys,

Keeping this short as poss, but I believe I am ABOUT 5 weeks pregnant. No way of knowing as I haven't had periods for a year due to endometriosis treatment. I had bleeding at 3 weeks, which was very heavy and clotty for four days, with cramps, and then stopped. Had on and off fresh to brown blood since but only when wiping. I had a scan at 3 weeks, no pregnancy there, but I was only 3 weeks ish so didn't expect much. HcG was 11 (not high whatsoever).

I fully expected this was an early miscarriage and didn't think much else of it. A week or so on (so 4 weeks pregnant) I started again with loads of pregnancy symptoms so took more urine tests, including digital ones and still very strong positives. Then only a day or so later, I started with bad abdominal pains and bloating, so bad I was curled up for three days in bed and had to take emergency leave from work for the week.

Fast forward a week to this week (where I believe to be 5 weeks), and I had an early scan as suggested by midwife after last week's episode and there's still no evidence of a pregnancy. So they admitted me after my scan on Tuesday and said I was experiencing pregnancy of unknown location (PUL) . SINCE Tuesday, I have been having bloods daily and still in a lot of abdominal and pelvic pain. My HCG is increasing, but not doubling. It was 1200 Tuesday and 1400 Thursday. Having another blood test today to see where we're at.

Obviously I know this is probably not going to be a viable pregnancy, but I'm just concerned and scared about the treatment. I don't want them to make me have the methotrexate as from papers I've been reading and posts on here, I could be pregnant and they just haven't seen it on an ultrasound yet? I don't want to get rid of a viable pregnancy, since I'm only 23 and it's taken us a year for me to even get pregnant. They said they would have operated on Thursday just gone, but due to Covid-19 they don't wish to increase my chances of getting it through operating, which I understand.

However, I had keyhole surgery last year and I recovered in a week and a half. I feel like this is a much better option for me to have just to prevent more symptoms that the methotrexate injection will probably cause me given my already abdominal pain and sensitivity to these sort of drugs.

A paper I read claimed around 50% of PULs end up being normal pregnancies and 50% end naturally generally, with a small percentage of these being ectopic pregnancies. I'm holding onto that as my HCG is increasing along with the 50% chance this could be a normal pregnancy. But I don't feel reassured at all due to the fact I've been admitted and here for five days now in the middle of a pandemic.

So I'm just looking for reassurance and opinions. Have you ever had a pregnancy of unknown location? What happened to the pregnancy in the end, and what options for treatment were you given if any at all? I'm finding Google not to have much info on PULs. The consultants are very busy and don't seem to have the info to tell me much more than what I have done above, which I get, but it would be awesome to have some other people's experiences about this as I don't know anyone who's been in this position before.

Take care everyone,

Meg x

[Cmc2020]

Hiya This so rubbish I have been through it before it sounds like an ectopic pregnancy I have had two now if your blood is higher than 1400 try and get a scan because sometimes the pregnancy’s are hard to detect on scans Intill your tubes rupture if you experience heavy bleeding and bad pain go straight to hospital or shoulder pain anything like that ! I just had surgery on Monday they eventually found it in my left tube the last time my right tube but it took ages to find the first one ruptured this one was caught just before it was about to rupture but still needed surgery to remove so the earliest it can get dealt with the better

So sorry your going through this xx

[Cmc2020 in reply to Cmc2020]

PS the bloods not doubling is ectopic my bloods where round about the same so was getting strong positives too I started to get ectopic symptoms at 6 weeks xx

[affecting_meg in reply to Cmc2020]

I'm sorry to hear this. I'm still in hospital now. Been here since Tuesday - came in for a scan in my workwear and never left! They're not very good with updating me on what's going on really.

I think I will be asking for another scan should my levels have got to 1500 then. The last levels I have is 1400 from Thursday.

Were you offered the injection of methotrexate or did you opt for surgery or not get an option?

Thanks for the response x

[Cmc2020 in reply to affecting_meg]

That’s rubbish see to be honest some of them don’t have a clue the first time it happened the docs where telling me to leave it I still had a chance etc and I was far from it I nearly died with internal bleeding this time I demanded a early scan because I new the pain and bleeding wasn’t normal and I just caught it in time !!

Your in the best place then incase anything was to happen but they should be dealing with it early instead of waiting all the evidence is there so why not treat it the now !? They slow rise and drop in ectopics no I never got offered that I had it the last time and unfortunately it didn’t work and my tube ruptured but the sooner they give u it the better chance it has of working your very welcome I feel for you because I know how bad it actually is is it a hospital in England or Scotland ? Xx

[Cmc2020 in reply to Cmc2020]

Sometimes the surgery is a good thing if the tube is badly damaged they will remove it and check your other tube they don’t diagnose you with ectopic Intill they find the pregnancy and 90% of the time it’s in one of your tubes xx

[affecting_meg in reply to Cmc2020]

That's awful they left you like that. Really awful. It seems like they don't really know themselves what's happening. Nobody has confirmed it's ectopic yet as they didn't see anything on the ultrasounds. I really don't want the injection and would prefer the surgery 100%. I'm in Yorkshire, UK.

Just been around and had my bloods done again so we shall see. I was told I'd be able to go home today but it depends on the bloods and my pain. The pain is very on and off though, so hard to say. Plus they're medicating me around the clock. Ugh I hate this!!!

[Cmc2020 in reply to affecting_meg]

They won’t Intill they find the pregnancy either by scan or if something happens I wouldn’t let them just fob you off in pain etc honestly don’t stand for it see what your bloods are keep me updated I really hope your ok my pain was off and on there as well and uncomfortable to go to the toilet see what your bloods are and go from there any questions just ask it really is worrying and horrible to go through I am in Scotland and wasn’t allowed visitors or that it’s really not nice sending you big hugs I really hope it’s a miracle because they do happen but with all they symptoms etc just be careful ❤️ xx

[affecting_meg in reply to Cmc2020]

My pain is the same. Very on and off. When it's on, it can be manageable or really unbearable for a minute or two!

I'm not allowed any visitors either. Got my own room and en suite, which is great but very isolating. I just feel a bit like I am being fobbed off because they don't know what is happening.

Just waiting for the worst to happen at the moment. I'm just concerned that if they haven't seen in on my ovaries or tubes etc then it could be somewhere else and cause me some internal bleeding or something. I have a high pain tolerance as I have endometriosis so my pain has been what I think as not too bad but definitely isn't normal either. So worried.

I'll keep the thread updated just for future reference as I've struggled to find any posts with PUL and rising HcG with no bleeding at the moment.

Hope you're recovering from your op well. X

[Cmc2020 in reply to affecting_meg]

I have a very high pain threshold too which doesn’t really help lol yes keep me updated you still have internal bleeding with your tubes rupturing that’s what I had and the pain I had over last weekend was my tube about to rupture but some doctors really don’t have a clue but we know when something isn’t right with our body’s but because I had been through it before I new what it was and they wouldn’t listen xx

[affecting_meg in reply to Cmc2020]

So I'm now at home as I asked to be discharged as I just needed to be with and talk to my partner as I've not seen him since Tuesday... I'm back in the morning to have another scan as my HCG has risen, slowly, again. Hopefully there will be something, even if it does just show the ectopic pregnancy. They have offered me the methotrexate injection but I'm just not sure about it at all. I would prefer surgery, is that mad? They did say I need to make a decision between injection/surgery but he short of shut me down when I mentioned surgery, so I just don't think they want to do it full stop. I don't know. I need to make a decision by tomorrow after my scan. I have also considered just saying that I'll go home and manage it and hope I will miscarry (since I don't actually know if its ectopic) or whatever. I'm so confused, it just doesn't feel real. Glad I'm home for the night though as I was really fed up at the hospital. X

[Cmc2020 in reply to affecting_meg]

Hiya , so it’s slowly went up again honestly it’s not a miscarriage hun and it really needs dealt with I was doing the same as you and holding off the first time and my tube ruptured so please honestly don’t leave it it’s so dangerous have a good sleep and go tomorrow and say you want the surgery what is your bloods at now ? Even sometimes ectopics don’t show on scans they see when they operate etc if it was a miscarriage they would be dropping fast not slowly rising xx

[Hidden]

I went in hcg 17000 couldn’t see the pregnancy just the gestational sac no yolk sac I had bloods every 2 days for 6 days went up to 23000 then they scanned me again I wasn’t in any pain just had spotting bleeding. Eventually after a good long poke about saw a tiny yolk sac the size of a dot in the gestational sac so ruled out ectopic thankfully but the size was of 5/6w I was 9/10w so I pretty much knew it would end up in another miscarriage, on off bleeding whilst waiting for another scan in 2w definitely no growth then opted for an MVA surgery at 12w.

[Cmc2020]

Good luck today at the hospital 💕

[Gemini31]

I had this happen to me last year in early July after my first IVF transfer at Shady Grove. I had to be given 3 shots of methotrexate before the numbers shot down like we needed them to. Not a fan of methotrexate. I felt fine until those shots. I could not believe they could not find my embryo. They thought it could be in a tube and that is why. They said it was an ectopic pregnancy since it was not in the uterus. I went at 5 weeks the first time up until about 7 weeks and still nothing showed on the ultrasound. I just don't get how they couldn't find it on an ultrasound, even if in a tube you would think they should be able to see it. I am just glad my tube didn't rupture and or that I needed surgery and the methotrexate worked. But it took me 3 months to get my period again because of the shots. The whole thing was not a good experience. Luckily I didn't have any pains or symptoms from the pregnancy, just the methotrexate causing the miscarriage and then afterwards.

[Ivf2020A in reply to Gemini31]

Im so sorry this happen to you , may i ask what may seem a silly question as im going to do ivf , how does it become eptopic or go into the tube if the ivf ppl put it in the right place , sorry if this sounds stupid x

[Cmc2020 in reply to Ivf2020A]

It can go from your womb and travel into the tubes with Ivf but its a small percent but does happen also if your high risk of having an ectopic or had one makes it higher risk I think I had both my tubes removed after two ectopics and so happy now I did do that because my Ivf has a better chance of it working now xx

[Ivf2020A in reply to Cmc2020]

Oh god i did not realise this can happen i had an eptopic in the past it was horrific n dearly died, something else to be fearful with the ivf I didn’t realise thank u for telling me

[Cmc2020 in reply to Ivf2020A]

Try not worry lots of people have them and still have a successful Ivf cycle is your other tube damaged ?

[Ivf2020A in reply to Cmc2020]

At the time i had one removed, there were both blocked , so i have one remaining tube but it is blocked

[Cmc2020 in reply to Ivf2020A]

That was like me well it was partially blocked so annoying isn’t it I didn’t think I would have another ectopic and had one on Monday it was awful I asked them to see if my tube was bad before removing it and they told me it was twisted so they just removed it which now I am glad but after my last ectopic they told me that other one was fine and obv it wasn’t where are you on your Ivf journey have you started ?

[Ivf2020A in reply to Cmc2020]

It’s horrific isnt it, I haven’t started i was about to start ivf just as covid started so im still in limbo now , my clinic have said they need to do small building work and will take 2-3 weeks after that who knows how they will start apps x more waiting

[Cmc2020 in reply to Ivf2020A]

It’s a pain waiting isn’t it hopefully they will all be up and running again soon I will hopefully get my period 4/6 weeks give my body time to heal then have my transfer good luck to you when you start it actually isn’t that bad at all if you have been through an ectopic it will be easy peasy compared to that ☺️

[Ivf2020A in reply to Cmc2020]

Good luck with your journey x and yes i hope so xx

[Cmc2020 in reply to Ivf2020A]

Thank you xx

[Gemini31]

Oh and if I needed surgery they would have removed both of my tubes, so I am happy the methotrexate worked.

[Ivf2020A]

Im so sorry this is happening to you i had an eptopic last year , my hormone levels were really high like a normal pregnancy, intially they said it was PUL and to come back so they sent me home they did say i had a cyst in my tube, i came back the next day as I entered i blacked out started vomiting like crazy and convulsing it had burst and i was minutes from dying- they took one tube out via surgery as it was touch and go- i had no pains up until i walked into the hosp the second time, if i was anywhere else at home or stuck in traffic i would have died. Please do take care it is a horrible situation any pains go in straight away x

[Gemini31 in reply to Ivf2020A]

Oh my gosh that is so scary. Glad you were there for them to do the surgery. That all is what I was scared about happening to me. I was reading about how you can die from it and kept having visions of it happening to me. So sorry that happened to you but glad you are OK now.

[Ivf2020A in reply to Gemini31]

Thank you , and yes it was a complete fluke me being there because they offered me a general app to come back and allowed me to choose morning of afternoon and i thought let me go in the morning if i chose the latter i would not be here. You just have to be weary of pains etc x although i had no pains in the shoulders or anything until it was dangerous time

[affecting_meg]

Hi ladies, thank you for all your comments and such. I've had a read through and I'm so sorry of your experiences. It breaks my heart how little is known about these things.

I went in this morning and my levels were up to 1880, so not higher or doubling but increasing slowly. The ultrasound again showed no sign of a pregnancy and nothing in my tubes or ovaries etc. So I had the methotrexate shot. I need some kind of closure on this now and I can't be having more and more time off sick after being in hospital all of last week. So that's it I suppose. 😞 I haven't cried yet today as I don't think it's all sinking in at all, I just thought I was going to be okay and the pregnancy wouldn't be doomed.

The weird thing to me is about the scan and not being able to see an ectopic pregnancy but the doctors treating it like it is an ectopic pregnancy. I get it, but to me it would or should remain a PUL as they don't actually know where the hell it was/is? So I'm just waiting now.

I know that a lot of feelings are going to hit me like a train this week, especially with still having to go to that God awful painfully slow EPAU twice a week so I've asked my GP to call me and give me a sick note for work as I need some time out after all this just to get myself together, which feels really pathetic. It took us a year to get pregnant and pre Covid we were referred to fertility but it was cancelled. I'm only 23 and I feel so disheartened. Ugh.

One thing I read online is that methotrexate is not supposed to bring on a miscarriage and your body reabsorbs the pregnancy? So I'm hoping I won't have much bleeding. And as for pain, this last four weeks has been a roller-coaster of pain so don't think that will be easing off anytime soon. My birthday is less than two weeks away though, at least I'll be able to have a cheeky drink and then my bloods done at the hospital the day after 😂. Happy birthday to me!!

Thanks for sharing your stories. I hope you have a good outcome in future pregnancies. ⭐

[Cmc2020 in reply to affecting_meg]

Hey glad you got back to us with my first ectopic they never seen anything on the scan either I was away at 8 weeks when it ruptured then my second one was seen on my scan at 6 weeks it’s mad they are hard to find sometimes I am glad you are getting it treated tho it’s horrible to go through even with the injection still look out for bad pain etc go to hospital right away if you do experience that hopefully your all better for your birthday 💕if you need to talk or anything give me a message x

[affecting_meg in reply to Cmc2020]

Thank you, you've been fantastic. So sorry to hear of your experiences. Have you gone on to have any children if you don't mind me asking? I really hope this is easy going from now in. And vice versa, you can message me if you need an anonymous reader/listener. All the best xxx

[Cmc2020 in reply to affecting_meg]

Your very welcome no not yet sadly had two ectopics now and three miscarriages but I have 7 frozen we embryos there so just waiting to start my Ivf again when the clinics open and my period comes 🤞 i will keep you updated have you had a laparoscopy operation ? That checks your tubes etc for blockages ? After this and u haven’t had one you should maybe ask your doctor to organise one xxx

[Ivf2020A in reply to affecting_meg]

Your going to be ok , its ok if your not, go at your own pace but most of all be kind to yourself x i was once told by a counciller its time to put the bat down and stop beating yourself- it really resonated with me as a lot of us on this infertility struggle journey do this x take care