8w+3 PUL large multiple fibroids undergoing tests and no idea what's going on

(9 Posts)
MOGMOGMOG85 Mon 02-Sep-19 14:16:23

Hi everyone,

After a year TTC with no pregnancies (not even chemical) I went for fertility scan which found fibroids and enlarged right ovary. This was end of May.

My follow up appointment never came through, there were multiple mess-ups and the appointment kept being cancelled for unknown reason, so I never had anyone look at my fibroids and tell me how many, where, what type, how large.

A month ago I tested positive for being pregnant for the first time in my life. I was thrilled but so anxious, feeling something must be wrong and worrying about the fibroids.

I kept testing daily and the line got stronger. I developed sore breasts, tiredness, and felt very hormonal. The last week or 2 not so much. I'm 8+3 today.

I took a clearable weeks indicator at 5+5 which said 2-3 which crushed me. I didn't pluck up the courage to do another one until 7+6 when it said 3+ which I found very reassuring.

I had an early scan booked privately yesterday at 8+2 and it was awful. She spent ages trying to locate my uterus internally and I knew something was wrong. Uterus measuring at just 2cm and displaced to the left and she couldn't find a yolk sac. There was very poor visibility, she tried both internal and abdominal. I saw one of my fibroids on the scan it was enormous like 20x the size of the uterus at least.

Hospital appointment today where she took blood, urine sample, and felt my abdomen but didn't do a scan. Now waiting for scan tomorrow and further blood wednesday.

Feeling heartbroken, anxious and just confused about what to do now. I'm on high alert for any pain or bleeding as I know ectopic can be an emergency, but just waiting.

Does anyone else have any experience to give me any guidance on what i may expect?

Many thanks sad xx

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itwasalovelydreamwhileitlasted Mon 02-Sep-19 17:55:48

I've had two ectopics - both ruptured and both meant I had to have the tube removed

I'm really surprised the hospital didn't scan you to confirm the ectopic/PUL as that's usually standard procedure when a private clinic identifies something is wrong

Pain wise it it a very noticeable one sided pain, could include bleeding but I didn't bleed on either. If you get shoulder tip pain then go straight to a&e as that indicates internal bleeding

They could offer you a drug called methotrexate but it's only licensed for use in the UK up to a certain hcg level (3500-5000) and you may well already have gone past that in which case unfortunately they will need to remove the tube x

MOGMOGMOG85 Tue 03-Sep-19 07:55:50

Hi @itwasalovelydreamwhileitlasted,

Thank you so much for your reply. I will stop worrying about little pains then as I guess I'll know if the pain arises.

I'm so sorry about your experiences - does that mean that you are infertile after 2 removals or did you have a chance still? Perhaps you didn't want to continue trying after that. I'm not sure how I'll feel depending on how this pans out.

I got a call last night with my blood results, they said my levels were very high and they wanted me to come in straight away. Then when they found out I am asymptomatic they changed their mind and said I can come in tomorrow (today) instead. I went down anyway because the call sent me into a panic, but after waiting a few hours I Was exhausted and there was only one ultrasound technician in the entire hospital doing A&E and everything - it was pretty clear that unless I was an emergency I wasn't going to get seen. I came home and slept, a full nights sleep thank goodness.

Going in at lunchtime and just praying they can find it - my biggest fear right now is that the fibroids are blocking visibility and it could be hiding anywhere. Also worrying that it might be in an unusual place as I think by 8 1/2 weeks I'd expect to have symptoms in the tubes?

This whole thing is terrifying and probably one of the worst outcomes you could hope for, certainly in early pregnancy.

It's just utterly bizarre, to be told I have a live 8 1/2 week old fetus growing away in there, but no-one knows where it is... very sad.

Thanks again, your story reassures me that although it's a sad process involving surgery that I can survive this and I'm sure they have seen a lot of these and know what they're doing xxx

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itwasalovelydreamwhileitlasted Tue 03-Sep-19 08:06:59

Yes I'm infertile now as no tubes left however we start ivf next week (I have done ivf previously which didn't work)

Did they say how high your blood level was?? Are they definitely sure there is nothing in the uterus just hidden behind the fibroids like you say?

Most ectopics are obvious by 6 weeks - mine ruptured at 5+4 and 5+6 both with live babies with heartbeats but a lot of ectopics don't have heartbeats and so sometimes you can get right up to 12 weeks and not know but your hcg levels would be pretty low in those cases

VenusStarr Tue 03-Sep-19 09:30:13

I'm so sorry you're going through this @MOGMOGMOG85, we spoke a few weeks ago.

I've had 2 scans so far (7+ weeks) but baby measuring 2 weeks behind, waiting for another scan next Friday to confirm missed miscarriage. One of my fibroids flared up badly and at the first scan they were concerned about me also having an ectopic alongside a uterine pregnancy. I spent a week on high alert for signs of ectopic. I'm half hoping that my fibroids are hiding the baby / distorting visibility too.

Are you going to the epu today? I found they're a bit more understanding and empathetic than a+e. I hope you get some clearer news and answers today ❤️ Xx

MOGMOGMOG85 Tue 03-Sep-19 12:05:47

Thanks both.

@itwasalovelydreamwhileitlasted my situation makes no sense to me and just waiting and waiting without anyone making decisions or explaining is horrific. A part of me does hope that it was hiding somewhere but I feel that is unlikely sad

My late term and lack of symptoms is what makes me think it might be somewhere else than the tubes - wherever it is I just want them to find it and help me/let me know - it's torture sad

@VenusStarr I'm so sorry you're going through a possible miscarriage and all the uncertainty too... hoping that we both get some certainty soon. Of course it would be great if the babies were just hiding but I can't bring myself to believe that. Sad as it sounds I'm desperate for a missed miscarriage because the ectopic thing is so terrifying sad

love xxx

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VenusStarr Tue 03-Sep-19 13:23:02

💜💜 @MOGMOGMOG85 with my suspected ectopic they thought it was under my left ovary and they described it as a mass. I waan't even aware that an ectopic meant implantation anywhere outside of the uterus. I just thought it was always in the tubes.

Sending love today xx

I'm sorry to hear your experience too @itwasalovelydreamwhileitlasted flowers


VenusStarr Tue 03-Sep-19 15:53:31

Hope you're OK @MOGMOGMOG85. I've just been on the phone to Tommy's, talking to a midwife which definitely helped. She reassured me about the fibroids too.

💜 Xx

MOGMOGMOG85 Wed 04-Sep-19 18:04:52

Hi @VenusStarr thank you so much for your kind replies. I'm so sorry about the wait for next Friday. It turns out I'm in the same position as you - they had another look and they found the embryo in the uterus, but it was measuring 6w2d, 2w2d behind where it should be. I don't really remember when we dtd that month but I just don't think that's possible because I got a positive test at 4w3d which would make it 2w1d which sounds impossible.

I go in on Tuesday evening to find out. Actually in comparison to the mental torture I was going through waiting for ectopic news and not knowing where baby was I was so relieved to get this news. For me it's good news - I didn't know I could conceive, and now I know I can, and my womb is healthy enough for an embryo to implant, even if it was only 1 in 16 months of trying.

@itwasalovelydreamwhileitlasted I was in such a state yesterday I forgot to say good luck with your upcoming round of IVF, I really hope it works out for you.

We just never know what's going to happen, fertility is such a random and painful journey for so many of us.

Lots of love and I'm glad you're both still trying and still have hope. I'm feeling weirdly positive, I don't think the nurses had ever seen someone jump for joy at news of a missed miscarriage.

Sending hope and love xxx

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