Pregnancy of unknown location

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1

Hi everyone, I hope I’m posting on the correct forum , as my situation is a little confusing and I still haven’t had a definite ectopic diagnosis. My current diagnosis is pregnancy of unknown location that is likely ectopic. Here my story , perhaps someone has been through something similar and has a story to tell me to help me understand…( sorry it’s quite long )

I’m 33yr old mother of two . I have been trying to conceive for 2 1/2 yrs . After various tests we found out that my left tube was blocked and I was given clomid to hopefully make me ovulate from both sides , which it did ,but for 5 month I never got pregnant. I found clomid really hard on my emotional state so I decided to take a couple of month off . After two month off I started again and finally got a positive pregnancy test the day my period was due . One week later I started to have left sided cramping and " prune juice " type bleeding / spotting, after a few doctors appointments I was sent to hospital for a scan . Scan showed no sign of pregnancy. Hcg test was done and came back 69 (low for 4-5 weeks pregnant) repeat hcg after 48hrs was 79 . Scan showed no sign of pregnancy. I had no more bleeding or prune juice after that . Next hcg was 115 , scan showed no sign of pregnancy, progesterone was 17.5 . 4 days later hcg 155 , scan showed no sign of pregnancy. 4 days later hcg 144 ( finally a drop ) doctors told me that is not a real drop and it’s classed as static . He’s convinced I’m having a ectopic but scan still shows no sign of pregnancy. Iv been left to expectant management with repeat bloods and scans in 4 days time . Has anyone gone through this ? Or something similar, a pregnancy of unknown location, and how did it resolve ? Emotionally I’m really stugling to cope , physically I have odd pains here and there had brown discharge once when wiping yesterday ( sorry tmi ) I keep getting pins and needles in my left hand ( not sure if related) and occasionally shooting pains in my legs ( both but not at same time ) all the hospital have said is if I get shoulder tip pain to go straight back in . I feel so lost and alone . And extremely confused about what is happening to my body .

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Dear Louise-s,

I am so sorry to hear of your loss.

Not knowing what is happening to our bodies can be extremely overwhelming and you have a friend here who understands. Whilst I was not diagnosed with a pregnancy of unknown location, I was admitted to hospital with a ? ectopic pregnancy on a Friday evening of a bank holiday weekend so I had to wait until the Tuesday to be informed that I was indeed having an ectopic pregnancy and it really was the most anxious wait.

It is important to understand that Pregnancy of unknown location - (PUL) is not a diagnosis; it is a label given until the final location of the pregnancy can be identified with certainty. In the event of a PUL, blood will be taken to measure serum progesterone and hCG and the hCG test repeated 48 hours later. The doctors would also want to repeat the scan.

Until the location of the pregnancy is known definitively or the serum hormone levels have decreased to below pregnancy levels, there is a risk of complications associated with an as yet undiagnosed ectopic pregnancy. Whilst I do not wish to alarm you, for every 100 pregnancies labelled as a PUL about 10 will subsequently be found to be ectopic; but not all of these will need treatment. If treatment is required, (methotraxate injection or surgery) this will depend on the results of blood tests and scans and I would discuss this further with you Dr.

I know you have been told to return if you get any shoulder tip pain but I would advise to also seek medical advice if you experience worsening pain or symptoms you are experiencing or dizziness and feeling unwell.

We would gently remind you to not undertake any strenuous exercise or lifting or housework while your hCG levels are dropping. While I do not want to alarm you, there remains the risk of rupture even with low or declining hCG levels. You should not resume exercise until your hCG levels are falling consistently and are in the low 100s.

I am sorry that I cannot provide you with more precise details but I hope all becomes much clearer over the forthcoming blood tests and scans.

We are here for you for as long as you need,

Sending much love,

Karen x

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Further information is available at www.ectopic.org.uk

Email us at ept@ectopic.org.uk.

Our helpline is 020 7733 2653 (available Monday to Friday 10am - 4pm).

Detailed medical information can be found on our website. Please remember online medical information is NO SUBSTITUTE for expert medical advice from your own health care team.

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Hi Louise,

Sorry you are going through this. I was diagnosed with PUl this time last year as my HCG would hover around 185 to 200, after 2 weeks of blood tests and scans I was finally treated with methotrexate (although they wanted to do a laposcopy but I refused as I was getting married the same week).

We were advised to wait 3 months which is did and sadly my next two pregnancies have ended in miscarriage. I am currently having some testing done at a recurrent miscarriage clinic.

I do know it’s unlikely to show much on a scan until the hcg levels reach the 2,000 mark. I hope your pregnancy manages to resolve itself and you don’t have to methotrexate or surgery. Thinking of you xx

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Hi there, I’m so sorry to hear about your situation. I had surgery for an ectopic 5 weeks ago but the location of my pregnancy was different.

I was admitted to hospital intially with hyperemesis,something I suffered with during my first pregnancy. I was all ready to be discharged the following day after fluid and they decided to do a scan just in case. Midwife did internal scan but found no baby. My hormone level was very high so they kept me in and told me I would probably miscarry.

Next day blood results came back and hormone level had gone up again! Did another scan but still no baby.

I was sent home for two nights and told to get in touch if I had any bleeding or pain which I didn’t so we went back on the Monday for more bloods. results came back at lunchtime and hormone level had gone up again.

This time they got the top gynacolagist in and he was eventually able to find baby. they confirmed as an ectopic and got me into surgery asap.

When they performed surgery they found I had a ‘rudimentary horn.’ This was an extra part of my uterus. Baby was stuck there which was why they found it hard to diagnose at first. Baby could have survived till about 16 weeks aparantly and if I hadn’t have been so sick it wouldn’t have picked up till 12 week scan, which by then it could have been a lot more serious! They removed the right tube and the part of the uterus that baby was in.

It was a crazy mix of emotions during that time,hoping, worrying, not knowing… I really feel for you. I would just say that font be scared to keep going back of any symptoms change and make sure they are thorough with scans. I’m so thankful my team were.

So sorry again…Hope my story helps xxx

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Hi Louise

I’m the same as you, pregnancy of unknown location, possible ectopic. I went to the EPU after having dark red bleeding for one day and the prune juice on wiping that has been described. I was worried about miscarriage but was completely blindsided when the doctor said she couldn’t see anything in my uterus and could see a 12mm adnexal mass in my left tube. She thought it could be an ectopic pregnancy but couldn’t identify it for sure. I had bloods taken today (HCG 124 and progesterone 30), and having them taken again on Friday. I’m about 5 weeks with short cycles. I had bleeding and spotting when I was due my period before realising I was pregnant which was red then brown which I have heard is a symptom. What I don’t understand is what happened and why. I have smoked a bit in the past - could this have caused it? And I’m worried about what’s going to happen next. I don’t have pain or symptoms over than low level cramps but I’m still bleeding brown/dark red blood/discharge. Does anyone know where the blood is coming from, does it come from the tube itself?

Could the mass be something other than an ectopic pregnancy and it’s just to early to see the foetus in the womb (wishful thinking).

How will they know from the bloods that it’s ectopic, what should I be looking out for…

Sorry so many questions but even if you don’t have the answers just some support will really help!

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Hi Louise

I’m the same as you, pregnancy of unknown location, possible ectopic. I went to the EPU after having dark red bleeding for one day and the prune juice on wiping that has been described. I was worried about miscarriage but was completely blindsided when the doctor said she couldn’t see anything in my uterus and could see a 12mm adnexal mass in my left tube. She thought it could be an ectopic pregnancy but couldn’t identify it for sure. I had bloods taken today (HCG 124 and progesterone 30), and having them taken again on Friday. I’m about 5 weeks with short cycles. I had bleeding and spotting when I was due my period before realising I was pregnant which was red then brown which I have heard is a symptom. What I don’t understand is what happened and why. I have smoked a bit in the past - could this have caused it? And I’m worried about what’s going to happen next. I don’t have pain or symptoms over than low level cramps but I’m still bleeding brown/dark red blood/discharge. Does anyone know where the blood is coming from, does it come from the tube itself?

Could the mass be something other than an ectopic pregnancy and it’s just to early to see the foetus in the womb (wishful thinking).

How will they know from the bloods that it’s ectopic, what should I be looking out for…

Sorry so many questions but even if you don’t have the answers just some support will really help!

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Hi Louise, I had an ectopic / PUL last year. I initially thought I was having a miscarriage but came out of the scan with a sac-like structure in my womb, a cyst on one ovary and a possible ectopic in one tube, they weren’t 100% sure about the tube. My hcg level was in the high 2000’s and I was offered surgery or methotrexate or 48hrs to come back for repeat bloods and with a decision on the the other two. I went back 48hrs later and my hcg had risen again to low 3000’s so I opted for surgery. However when the surgeon scanned me to see what she was doing there was no sign of the pregnancy. The tube was clear and they ruled out the sac-like structure being the pregnancy so I officially had a PUL. I was given another 48hrs but the hcg had risen again so I had to have methotrexate and they never did locate the pregnancy.

That week was the longest of my life. All the uncertainty, worry, blood tests and the travelling back and forth to the hospital was just awful. I’m so sorry this is happening to you.

I really hope you get an answer and a resolution very soon. Please be kind to yourself and take it easy. And know that you are not alone xx

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Thank you all so much for your replies and helpful, caring words . I started with the prune juice type bleeding again last night accompanied by period type cramps and RIGHT sided pain radiating down my leg . I took some strong painkillers and it eased it a lot . The advice from gynaecologist was to go to A and E if the pain did not ease after half hour . As it did I didn’t go , this morning I feel pretty much the same , period type cramps . Coincidentally? ? It would be about the time I would be due my period. My next hcg and scan is tomorrow. I’m hoping after all this pain and prune juice my levels have reduced enough to be classed as " not pregnant " thank you again for your responses x

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Well Friday my worst fear was confirmed. Right sided ectopic! Strange how when I first went to hospital with concerns ( a month ago ) I went with left sided pain . My left tube is blocked so it made more sense that it was there . Well no , it’s right sided ( what I thought was my good side) where does this leave me now fertility wise ? It seems both both tubes are now damaged and I desperately want a child . I really hope IVF is not my only option

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Hi Louise-S

I’m so sorry to hear this, how are they planning on treating this? I presume they will try their best to save this tube if this is your only good tune and make sure it’s clear for the next time around?

My friend lost her tube last year and is now roughly 20 weeks pregnant with her remaining tube which she was told was damaged so there is hope.

Xx