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Molar pregnancy - story for others

73 replies

AnotherStory23 · 09/10/2022 12:22

Hi everyone,

I wanted to share my story in the hopes that it might help someone who has just been diagnosed. I found out I was pregnant at the end of March and everything seemed fine, not particularly nauseous, with classic pregnancy symptoms. Only unusual thing was I got my linea nigra at about 7 weeks. At 10 and a half weeks I had a bit of brown blood when I wiped, but it freaked me enough to book a private scan. Unfortunately, at the scan, there was nothing in my womb except for what the woman doing it described as 'cystic spaces'. I was referred to my hospital where they took my bloods and scanned again and said it was probably a missed miscarriage. The next day however, the sonographer called to say my Hcg blood level was very high, at 108,500, so I'd probably had a molar pregnancy. I had never heard of it, but when I googled it, of course all I saw was the word 'cancer.' I panicked. We went in again on Sunday and an oncologist scanned me again, and said it looked likely I had had a complete molar pregnancy. I was booked in for an ERPC on the Tuesday, two days later. From there I had to wait weeks for the official diagnosis to come, which was truly excruciating. However, once it did, I was immediately referred to Charing Cross hospital, who have taken amazing care of me. I had to have my bloods taken every two weeks, and send that along with my urine to Charing Cross, and call up for my results two or three days later. It was unfortunate that every time I needed my bloods I had to go back to the EGU where I had my original diagnosis, which was obviously very upsetting. My results took longer than 8 weeks to come down, but they were down from 108,500 to 65 by the time I got my diagnosis 5 weeks after my ERPC. They were very slow at a certain point, only coming down by 5 or so each time, but luckily I got my period back in 6 weeks, and it regulated very quickly, which seemed a good sign. I got the news that my results were back to normal (under 25 for urine and under 5 for blood) on the 11th of August, the day before my birthday -- what a birthday present!

Since then, I have been trying to heal, and to come to terms with this. This was my first ever pregnancy, and a much wanted one, so I was of course so sad. I will now be observed with monthly pee tests until February -- had my first test in September which was normal, and about to do my second. I've struggled with accepting all this, accepting the reality of it all. I've had wonderful friends around me, but no one had ever heard of this before, so I do feel very much like the odd one out. Lots of my friends already have children, and are now having or have had their second, which is tough. Currently have two very good friends who are pregnant which makes this extra hard.

But I wanted to try and write something that might bring some comfort to someone who has been recently diagnosed. It's a tough thing to go through, probably the worst thing in my adult life, but you will feel better, and it's more likely than not that your HCG will come down.

Sending love to anyone who is going through this, or getting over the aftermath.

OP posts:
helloblodyn · 06/05/2023 12:07

@AnotherStory23 thank you for replying. I think it just helps to know there are others who have gone through this. I'd convinced myself it would be a partial as no one diagnosed it on the ultrasound and i thought the complete would be more obvious on the scan but i suppose they wouldn't suggest it as a possibility unless they were sure.
I feel as if the pain of the miscarriage is just being dragged on for six months.
I'm so grateful that we have the knowledge of this in medicine and that we live in the present.

Snoops123 · 06/05/2023 12:24

Hi - I know what you mean about the testing yourself for HCG - it’s horrendously all consuming.

Yes - I’m fine now and had 2 further babies with perfectly easy pregnancies so fingers crossed for you too ❤️🤞🏼

helloblodyn · 06/05/2023 18:47

@Snoops123 that's wonderful news xx

Snoops123 · 06/05/2023 20:11

I really hope your numbers drop quickly. Mine was a bit of a nightmare as they did the D&C and hadn’t got it all, it apparently only takes one cell to be left and it can multiply again and my numbers started rising again. If your numbers are dropping that’s a really good sign.
if you ever want to talk, vent, whatever just message - I’ve been there and it’s a nightmare. Very hard for partner to understand too - kept trying to to make me feel better saying was never a baby - but it was to me. Have you planted your rose? Is it a special kind? Xxx

helloblodyn · 07/05/2023 15:38

@Snoops123 oh that sounds very stressful for you. Did you gave a general? I had mine done awake and i'm worried about how thorough it was as i found it unbearably uncomfortable and just about managed to get through it. All the documents said it would be crampy but for me it was so much more- I wonder if that's because it was abnormal tissue I don't know. I'm not sure I'd be able to have that re done if they hadn't got it all!

My rose is planted, its just a little patio one. I can't help but feel silly now that i bought it but trying to look at it as something to remember this experience and what could have been rather than feel silly.

maxandru · 07/05/2023 18:45

Hi @helloblodyn
so sorry you’re going through this. I too was diagnosed with a molar pregnancy in July 2022, and it’s a total rollercoaster. I was finally discharged from Charing Cross last week after 10 months . But luckily I didn’t need chemo- I think about 85% of people don’t need chemo so hopefully you’ll be ok. The waiting game is rubbish though- I found that the hardest. Wishing you tons of luck that your numbers drop quickly xx

Snoops123 · 07/05/2023 20:30

It’s really not silly - it’s a lovely thing - and everyone deals with things differently anyway - you don’t have to explain yourself to anyone xx 🌹

Snoops123 · 07/05/2023 21:53

Hi - just wanted to say glad you are ok and been fully discharged xxxx ❤️

mistlethrush · 07/05/2023 22:10

My Molar pregnancy was 20 years ago now... slightly over. MC diagnosed in August and treated with DnC in Shrewsbury - I was at the end of a holiday so not at my home hospital. They said that they'd send details to me and my GP if there was anything to worry about. Kept on bleeding - visited the GP quite a few times - they said it was normal and things would sort themselves out... nothing from Shrewsbury. Ended up seeing a locum in the Drs who actually examined me when I was just experiencing a bleed and I was referred for a scan the following day - then kept back to see a Dr and had another DnC that afternoon. 2 weeks later back, another scan and taken down to Sheffield - I had chemo injections - 4, every other day then a week off and start again. 6 months of that and my last injection was on my original EDD. No TTC for a year after that. A year later and I'd got to the top of the IVF list again - and got pregnant naturally again. DS has just had his 18th birthday.

I had two mc after DS - both overshadowed with the worry of having another mp and that meant that it was too difficult to carry on TTC so DS is an only - but worth waiting for!

Georgia324 · 03/06/2024 15:07

Hi everyone,

I just thought that I'd add my experience to the list! I had a partial molar (diagnosed after the ERPC) and unfortunately my levels started to plateau so my EPU contacted Charing Cross who advised I needed to monitor another couple of weeks. We did that - nothing dropped - so I went in for an appt & we agreed to try another ERPC, which has a 50% chance of working. The alternative was chemo, which I wanted to avoid due to the delay to TTC again, more than anything else really. Sadly the second ERPC didn't work - my levels dropped for 3 weeks but then started to creep back up.

After 3 rises we agreed to start chemo. I've had 3 rounds of chemo, and I reached negative after 2 rounds, so I need a couple more consolidation cycles and then I'm done on 30th. Obviously I'm gutted about having to wait - but the consultant kindly took pity on my age and said we could reduce the wait from 12 months to 9 months.

I'm excited for the chemo to be over and to be back at work. Everyone is different but I wouldn't have been able to function normally during this time. I'm wearing sunglasses inside as my eyes are v sore / light sensitive, and I feel really tired and meh, but that does lighten up towards the end of the cycle during the "off week". It's broadly been completely manageable.

I'm very rare in that only 2 women a year with a partial molar in the UK need chemotherapy treatment. It is usually the complete molars (though again I think only 15% of those do).

I hope to report back in a year's time telling you I'm pregnant! My son is 3 now and this has made me more grateful to have him in our lives. I hope to give him a sibling in due course.

Big love!

Figtree11 · 04/06/2024 20:49

@Georgia324 im so sorry that you have had to go through chemo.
I found out last week that I have had a partial molar pregnancy & waiting for Sheffield to get in touch to start monitoring. Had the ERPC nearly 5 weeks ago now. Feeling apprehensive about what is to come.
Im pleased you are now at negative, really hope it you will be done with treatment soon

californiacooper · 16/07/2024 00:52

It's far too late for me to read this thread I've found just placeholding for tomorrow :)

Georgia324 · 11/08/2024 21:23

I hope everyone is doing well. I finished chemo 6 weeks ago and I feel good - much more energetic and positive about the future. I'm actually going to be a bit naughty and wait only 6-7 months rather than 9 because my case was a very quick one to treat and simple. By then the risk of regrowth will be <0.25%. I'm always here if anyone has to go through chemo and needs to chat. Just to reiterate for partial molars it's insanely rare so don't look at this and think it will happen to me. Onwards!

AnotherStory23 · 12/08/2024 11:54

@Georgia324 very glad to hear this and that you are feeling more energetic! I didn't have to have chemo but I didn't wait as long as I should have either after I got to zero, and was pregnant with my son almost straight away; he's one tomorrow! As you say, onwards and upwards. It will happen! Thank you for sharing

OP posts:
Figtree11 · 12/08/2024 15:54

@Georgia324 so glad you are doing ok after finishing chemo. I’m so sorry though that you had to go through that.
I’ve been ‘lucky’ that following my partial molar diagnosis in May, that I have been discharged from Sheffield. It took about 8 weeks to get to negative following the d&c. And I got discharged a few weeks ago now.

@AnotherStory23 so great to hear a positive story following a molar diagnosis. I am extremely worried about it happening again. So good news stories are always great to hear

AnotherStory23 · 12/08/2024 16:06

@Figtree11 I'm happy to share this - I trawled through mumsnet looking for stories like this, but couldn't really find too many. Very glad this thread is being used to share some!

I know, the fear is real about it happening again. I got two early scans from the EGU near me, one at 6 and one at 9 which really did help me, though I was anxious during the pregnancy in spite of all reassurances. As soon as you are pregnant again you can call and they'll book you in. I think pregnancy after loss will always be hard, but the very particular kind of loss we experience with a molar makes it even more so I think

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Figtree11 · 14/08/2024 12:19

@AnotherStory23 thank you, I too have searched so much through Mumsnet for threads on molars, but obviously isn’t that common.
Sheffield told me I should get an early scan at the EPU next time I get pregnant. But I just feel on the wrong side of statistics all the time, as before the partial molar I had a miscarriage.
I live in hope though. I hope your son had a lovely birthday!

Georgia324 · 14/08/2024 12:21

There is very little but one thread put me onto the Facebook group My Molar Pregnancy, which has been absolutely amazing. I've made a couple of friends through it and got so much invaluable advice. Best of luck to all of us on this journey xx

Georgia324 · 14/08/2024 15:22

@Figtree11 given you also had. PMP, do you feel like an early scan would help much? I had two early scans with the PMP which were fine (though I measured a week behind). I think it's hugely helpful with complete molars but not so much for us :(

Figtree11 · 14/08/2024 17:25

@Georgia324 no I don’t think I will find it reassuring at all either. I had an early scan with the PMP at 7 and a half weeks due to a previous MC and having spotting with this one. The scan was perfect, saw the heartbeat, was told everything looked perfect & even given odds of the high percentage of it working out ok. Got to the 12wk scan to be told no heartbeat, and then 4 weeks after that found out it was a PMP. If I’m lucky enough to get pregnant, I know I will be absolutely terrified the whole time

AnotherStory23 · 14/08/2024 20:47

@Figtree11 @Georgia324 I think the things that got me through were thinking how rare molars are in the first place, and the small incidence of them happening again. I know that's easier said than done. And each day I told myself 'today I am still pregnant'. Once I felt the baby move I was scared but in a new way! As much as you can, you have to try not to let the experience ruin a healthy pregnancy. I certainly wish I had spent more time enjoying each day and not ruminating on what could go wrong.

And thank you, he did have a great day!

I'm sending you both a big hug. I know how hard this is

OP posts:
Figtree11 · 15/08/2024 18:58

Thank you @AnotherStory23 Hopefully one day I can come back to this thread and share my happy news too ❤️

AnotherStory23 · 15/08/2024 20:47

@Figtree11 Please let me know if you ever want to message. Happy to talk

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Figtree11 · 16/08/2024 18:16

Thank you @AnotherStory23 i really appreciate it xx

CxCxTtc2024 · 26/08/2024 07:57

Hi everyone.
I placeheld here so I could come back to if after having found out I had a molar pregnancy recently, I had d&c on 11/7 after finding out on 10/7 it was molar at a scan at EPU.
After referral to Charing Cross I submitted my first blood and urine and unfortunately it came back much higher than my previous hCG, so after calling me at 4pm on Thursday 1st August, I was there on Friday 2nd, for tests, diagnosis of GTN and ended up staying for a week to start chemotherapy. I've just finished my second round at home, my hCG is already down quite a lot, but I know that it can plateau or rise at any time so I'm trying not to get my hopes up yet.

@Georgia324 I'm also in the FB group, I've found it helpful to see and chat to other people going through the same thing.

@Figtree11, how are you doing? Did you have a PMP? I remember we were both in a pregnancy group together. I hope you're doing okay