Partial Molar Pregnancy and aftercare

[stillhangingon]

I'm not sure if I've posted this in the right place or not. In August 2018 I had a D&C due to incomplete MC and was told that I had a potential partial molar pregnancy. I was sent home after the surgery and that was that.
I'm worried as I've been told that with molar pregnancies you should have aftercare to make sure that HCG returns to normal levels and the womb doesn't have any abnormal cells left behind as they could potentially become cancerous.
This is more of a concern now as I've been missing periods and other symptoms and worried that it may be linked. Am I being silly to worry or should I bring it up with my GP? Many thanks in advance x

[ploopypleepy]

@SpiceGirl93 how awful 😞 that it's dragged out without you having an answer as well. It seems like not many doctors/midwives have come across many molars too so that doesn't help! I think it's just so they can say that there is no more molar tissue. They used to say wait 6 months but there's no way I'd do that. Do you think you will start trying again next cycle then? I'll deffo keep you updated be nice to have someone in the same position! Xx

[SpiceGirl93]

Oh that’s good!
Yeah similar to me but I never saw the heartbeat... I went to an early scan around 9 weeks and saw the baby but no heart beat, eventually was told nearer toward my 12 week scan that it was a suspected partial Molar. They wouldn’t perform the miscarriage procedure before that time as the scans were showing that something was growing but they couldn’t work out how the baby was without a heartbeat but turned out to be the molar tissues I think!
why do they say to wait 4 weeks before trying again? Do you know?
Keep me updated with how you get on! Xxx

[ploopypleepy]

Yeah once I was at normal, I just had to have a clear blood test 4 weeks from then. After that came back they discharged me so free to start trying. I had a scan at 7 weeks due to bleeding and saw a fetal pole and heart beat so presumed everything was okay. Then at my 13 week scan got told there was no heartbeat, only found out it was partially molar when I got histology back! How about you how did you find out ?? Omg no I am exactly the same ... I think back to the 'I'm really sorry' moment and it fills me with anxiety. In my opinion you make as well just stay off hormonal contraceptives because you don't want it to effect your fertility when you start trying again in hopefully a months time. I did but came off after a month of being on it .... wish I hadn't gone on it to be fair. Xx

[SpiceGirl93]

Well I’m glad your levels quickly dropped once it had all passed! So once your levels were normal did you wait for another month until you started trying again?
That’s exactly how I feel! How did you find out? Did you go to a scan kind of thinking everything was ok and then found out? Or did you start bleeding? I am actually so scarred by my scan lol I know that sounds stupid but it was such a horrible experience the thought of it happening again is terrifying!
Nope, just being super careful. Was you told to go back on the pill? Xx

[ploopypleepy]

@SpiceGirl93 they think it didn't work because the molar tissue was particularly adhesive ... whatever that means, I think they were worried about causing damage to the uterus too. Ermmm it took about 2 months in total, but once I'd passed the tissue it was literally weeks. Hopefully your next test will be negative! Yeah mine was a partial too... I don't think there's anything you can do to be honest I think it's just a total freak accident. I'm already anxious for my first scan even though I'm not even pregnant yet 😣😣 yeah I'm 27... at least we have youth on our side! Are you on the pill now ? Xx

[SpiceGirl93]

Yes me too! It’s horrible having no one else who has experienced it isn’t it. Oh no! Why did the surgery’s not work!? Do you know? How many weeks did it take for your levels to drop completely? So exciting that you can start trying again! Yes I’m 27! Are you? Was yours a partial? And do you know if there is anything you can do to prevent it happening again!? I’m honestly so paranoid now! Xx

[ploopypleepy]

@SpiceGirl93 no worries! I actually joined Mumsnet when I found out about the molar pregnancy just so I had someone else who had experienced it to talk too. Wow that's really good that your results have come down so fast ... I needed two surgeries and even they didn't work, I ended up passing the tissue myself at home which was great. I'm all clear now though. I've actually just started trying again now... it was my first too, awful isn't it 😧😧 how old are you if you don't mind me asking ,if the 93 is your birth year we are the same age! X

[SpiceGirl93]

Hi @ploopypleepy thanks so much for replying and tagging me in the other active thread :)
Yup I got it back yesterday and my surgery was 8 weeks ago lol! Been the worst wait ever! However my EPU have been amazing and have been monitoring me as my levels before surgery were so high 142,000 but the procedure was successful and my last blood came back at 17 but I’ve only literally stopped getting positive tests which is crazy!
Had a period last week which made me
Feel a bit better. I’m just dying to be preg again as it was our first and we was so excited! I’m just so scared it will happen again x

[ploopypleepy]

@SpiceGirl93 hey! Hope your okay, sorry to hear about your diagnosis. Have you received any information from your specialist hospital yet?? Im just waiting for my final blood test to come back clear and then my follow up is over!! How are you getting on have you had surgery ? X

[SpiceGirl93]

Hi guys
I don’t know if anyone will still see this post but I finally got my results back today confirming my partial molar pregnancy
How are you all getting on?

[Collins99]

@Hopewills24 yeah I've been really impressed even this early on, I got my first result today which was 1.27 ... so not normal but not high. Will know more next week to see if they go up or down. 6 months seems like such a long time doesn't it... what are your results like now ???

[Hopewills24]

@Collins99 I'm with weston park too. They are so brilliant you couldn't be in better hands! They predict 6 months of treatment which is sooo long and that's hard to get my head around but just got to remember it's going in the right direction. It's just such a cruel unfair thing to happen to anyone.

Wishing you so much luck with your results! Let me know how you get on

[Collins99]

I'm not surprised you felt so bad before with your hcg so high!! Glad that it's it totally wiping you out though. I'm with Weston park Sheffield, which one are you at ? No your right, I would never know so I don't know why I try and guess. It makes me so anxious waiting to hear. How many cycles do you think you have left ?

[Hopewills24]

@collins99 I did start on methotrexate but then it stopped working so I've just changed to carboplatin. It's been OK. I've felt better on the chemo that I did before the surgery because I was just so sick. It's just the emotional toll it takes. Which hospital are you with? I've learnt to try not to second guess what your levels are going to do becuase suer you just never know. Although I'm a worrier and not very good at that!

[Collins99]

@Nerdy123 it is a really awful time though... first the loss of the baby and then having to deal with molar side of everything. And yes your right, we're lucky that we have such good molar pregnancy specialists to look after us. I hope everything works out for you.

@Hopewills24 gosh what a nightmare for you. How do you feel off the chemo? Did they start you off on methotrexate? I hope your numbers are coming down. I'm suspecting my levels have either plateaued or are rising slightly as my last two blood tests went up from 530 to 590. However tomorrow will be my first urine test result.

[Hopewills24]

@collins99 thank you for asking. Unfortunately my levels never really went down from the 200k mark after two erpcs and I'm in the middle of chemo. Mine was complete so more likely to need chemo.

Brilliant you're staying so positive fingers crossed your levels going down nicely! Most people's do.

Happy to answer any questions I am a seasoned pro by now 😊

[Nerdy123]

@Collins99 well done thats the way to look at it. Thankyou for that yes im ok i actually stressed out so much over this that when this cleared i had other health issues that im recovering from now that is why in hindsight i realised even if it was bad i had all the care and treatment and shouldnt have stressed that bad. Your attitude is right stay that way and age is on your side!

[Collins99]

@Nerdy123 thank you so much I have everything crossed! Im 27 so have age on my side even if worst comes to worst I have to have treatment and wait another year to try again. Trying to look positively for a change 😂 really glad your levels cleared up quickly!! Hope your doing okay x

[Nerdy123]

@Collins99 Noticed you posted here, sorry to hear this i hope tomorrow your results come back with a low results. I had a complete molar and with gods grace my levels cleared up and im ok. I can assure you that eitherways your in very very good safe hands and in very worse cases the outcomes very very positive because of the treatment available. Yours is a partial so greater chance of it lowering quickly without issues.

[Collins99]

Hi everyone I'm so glad I came across this post even though it's a bit old. I have been diagnosed with a partial mole. I have sent my first urine test off and should get my results tomorrow. It's been 2 months since my ERPC and my blood levels were in the 500's three weeks ago.... praying they have gone down. How are you all doing now. @Hopewills24 are your levels back to normal now ?

[Defyingstars]

@Leaf87 that’s awful - go via your GP next time and see if they can refer you. Wishing you all the luck for the new year. I have found the past year the hardest of my life so totally understand the desire to take a break. It can be all consuming xxx

[Leaf87]

@Defyingstars that's amazing! We must have got pregnant almost the same time, i would have been 9 weeks now. My EPU refused to scan me when I phoned concerned due to covid!! So glad you having wonderful care. We are moving so i won't try again till the new year i don't think.

@Hopewills24 we are looking at a burnadoodle on Saturday 😍😍 so excited!! My periods took about 10 weeks to return but then even with higher than normal hormone levels they returned to 27 day cycles so you never know. I will keep everything crossed and hope for the best for you

[Defyingstars]

@Hopewills24 I have had 2 scans already and have one more before I have my dating scan (which is at nearly 14 weeks rather than 12). All scans have been NHS - after a molar pregnancy you have to have a scan at 8-10 weeks pregnant, the others are because I have a sympathetic GP who referred me on the grounds of anxiety and due to my miscarriage history.

I didn’t get a negative test until 3 weeks after ERPC and didn’t stop bleeding until 2.5 weeks after. It’s so frustrating it takes so long doesn’t it. The amount of money I have wasted on pregnancy tests!!

[Hopewills24]

@Leaf87 a puppy sounds like a brilliant idea! What type? I'm a dog groomer so love all things dog 😊

@Defyingstars congratulations! I will keep everything crossed for you. Will they do an early scan for you?

I just started with some red bleeding which I haven't had throughout the whole thing. My period would be tomorrow but can't possibly be with such a strong positive 🥴 I feel like this is going to turn out to need more treatment but we will see. Hate the waiting and guessing.

[Defyingstars]

@Leaf87 a puppy!! This sounds glorious. Such a great idea 😍

I am pregnant again, I conceived in July after I got my all clear from Charring Cross. After 3 miscarriages in the past year, I am very anxious but trying to take each day as it comes. I am currently 9 weeks, previous losses have been around the 11/12 week mark so still some way to go.

@Hopewills24 my last ERPC was April and I was contacted in June to tell me about the partial mole (sigh!). Luckily my levels had returned to normal but had to wait 4 weeks for the all clear.

As hard as it was at the time, I think I am thankful for that 4 weeks when i wasn’t allowed to try again as it gave me a bit of time to breathe (and drink wine!!). Really hoping your levels have come down 🤞🤞🤞