Molar pregnancy: Tell me your story.

[LuluF91]

Hi,

Me again... I'm just looking for others who experienced a molar pregnancy to talk through it with me as when I've gone on to Facebook support groups they seem to be less than positive
Does anyone know when I get confirmation of diagnosis from the lab? I had the procedure to remove on Wednesday and afterwards was when he said that would be his diagnosis but needed confirmation.

Secondly, just where to go from here? I physically am pretty OK...in a much better state than I was in as my body had been trying to miscarry for weeks without success and just causing alot of pain. Emotionally things are not so good. I am grateful to have closure to it all, I am relieved i didn't have to terminate "a baby" as such. I don't mean that to disregard others feelings but it is what helps me not to crumble. At night though I just cannot sleep. I have alot of support but I feel very overwhelmed. I'm not crying day or night but I'm just in constant search of answers and information. The Facebook groups scared me with regards to the potential of chemotherapy if it was not fully removed.

Just I'd love to hear others experiences. Whether you are going through it or out the other side. It feels like this is going to be a long journey

Apologies I have copied and pasted this as I think I didn't have it under the appropriate topic. Hope I've not broken rules!

@MustStopSnacking28 that's good that your levels have gone down quickly. I'm going to give it a few days then I'll ring the EPU again. Thank you for your kind words.

Hi,
I thought I would post an update, mostly just to vent I think.
I didn't hear back from the EPU after leaving a message asking about my histology results so contacted my GP (I had been waiting about 2 1/2 weeks by then) to see if they could give me any updates. Well my GP phoned me back and informed me that the hospital never sent my discharge papers so she wasn't aware I had been in hospital (I wasn't given these when I left hospital - it was gone 1am when I was discharged so I was told they would send them electronically).

My GP was really nice and got me in later that day to take bloods to compare to my hcg levels from before the ERPC and she contacted the ward about the discharge papers and has contacted the consultant to chase things up with histology. She also printed me a copy of the blood results from before my ERPC as I had never been told what my hcg levels were.

On top of this I got a call from a midwife this week to say I had missed my 12 week scan and had to reschedule this - I had to explain what had happened and that the hospital had told me they would contact the midwives to make sure they knew - the midwife was very sympathetic and apologised and said yes they are normally informed but 'sometimes ladies fall through the net'.

Its been a difficult week - poor/no communication from the hospital has caused delays in followup and has caused me extra stress and upset. I still haven't had any contact from the hospital about the histology results so will contact them next week to ask again.

On a more positive note, my GP contacted me a couple of days ago to say she now has the discharge papers and that the blood tests results show my hcg levels had dropped since the ERPC and are close to normal.
Thank you for reading - it helps to write things down/vent.

So sorry to hear of all of the delays you’re experiencing, it makes a bad situation even worse when you are just constantly waiting for results or the phone to ring or whatever! Your GP sounds great though, good of them to chase up and check your bloods for you as well. It’s good news that your levels have dropped too, hopefully that means everything is on its way back to normal and you won’t need too much follow up monitoring once you have been referred to the specialist centre. Definitely good to use threads like this as a place to vent as well - so few people are familiar with a molar pregnancy and all of the shit that comes with it that hopefully we can support each other if necessary

Yes I am hopeful that the low levels at my recent blood test will mean I won't need too much followup. I had a call from the hospital today to say they had a letter from my gp about follow up contact! It seems that this has had an impact. They have organise me an appointment on Wednesday with the consultant, I'm not sure if this means my histology results are in or if they are just wanting to follow up with me after the gp letter (I didn't think to ask when they phoned!).
@MustStopSnacking28 I hope you are doing ok this week? How is everyone else doing?

@Allnew2021 hey, sorry to hear things are still being dragged out but great news that your levels are nearly normal. Your follow up shouldn't be long at all. I got discharged a couple of weeks ago so have officially started trying again! This will be our first proper month so not getting my hopes up for anything this soon but fingers crossed 🤞🏼 xx

@Allnew2021 I am ok thanks. I have an early scan tomorrow to check that the positive tests are actually a new pregnancy so I am very nervous, I have been trying not to think about it I am so worried in case it’s my levels going back up from the previous molar pregnancy...only one day to wait now so at least I will know one way or the other.

@ploopypleepy good luck this month with TTC again! You never know, it might happen straight away

@MustStopSnacking28 I can understand you feeling worried after everything that has happened, I hope all goes well tomorrow

@ploopypleepy good luck on your TTC journey!

I had a molar pregnancy in 2017, had hcg of 100,000 + at diagnosis. Had 2 d&cs but it didn't fuck off so I had to post urine tests to Sheffield every week for months. In the end I had to have chemotherapy but it was fine. It's had no effect on my ability to get pregnant but I have just suffered another molar pregnancy and I'm opting to have methotrexate this time round

Hi @14down so sorry to hear about this. Twice seems really unfair! How are you feeling about it? Hope you are doing ok

Hi everyone,

I hope it is ok for me to join. I just wanted to chat to people who have been through this and have experienced the same.

I came off the pill in November and we started trying for our first baby. We fell pregnant straight away and I could not believe our luck! I took about 20 pregnancy tests to confirm and then we started to get very excited! I had my first midwife appointment at 9 weeks 5 days in January. I did explain then I had, had very little symptoms, basically just really sore boobs! She said that was normal for some and that I might just be lucky. She did say due to COVID the scan may be 14 weeks instead of 12. We were so excited that we just decided to go private. At 10 weeks we had a private scan. Thy said they could see a yolk and a sac but no baby. They then did an internal scan and she said maybe my dates were wrong. I knew they weren't that wrong and she told me go away and come back in 2 weeks!! The next day I rang my EPU and they booked me for a scan on the Wednesday. They said it looked like I had, had a missed miscarriage. They said they are governed by the NICE guidelines, so I had to go away and come back in a week for another scan to confirm this. That week was utter hell! I was checking every second for blood but still nothing! I went back the following Wednesday for my scan, they said that there was no change, the sac was empty but still growing and that I had a bleed inside the sac. They booked my in for an MVA that Friday. This was my choice, as the weeks wait had allowed me a lot of time to research and I wanted this route to ensure everything was gone. At the pre op, the midwife asked our consent to test the tissue for molar pregnancy. She said its super super rare but they have to ask. We said yes and that was that!

Had the MVA under local on the Friday and bleed a little on the Friday. Nothing on the Sat or Sun and then Monday a little more, not heavy at all and then Tuesday some brown discharge. 2 weeks later ( last Friday) I took a pregnancy test. Positive! I rang the EPU and they said to wait 3 weeks and it should go down. My husband and I were just starting to feel a bit more positive and eager to try again.

On Monday I got a phone call to say my tissue had tested as partial molar. I was shocked, I couldn't even take in what he was saying. He said I would be referred to Charing Cross, I rang them on the Tuesday and I spoke to a lovely lady who went through everything with me. Today I rang and checked they had my referral and they do. They said my testing kit will be sent later this week/ early next for the first testing.

Sorry, I know that is information overload. I am just in a state of shock about it all and so worried and scared about what is to come. I know the first test will say my initial levels, but I was under the impression I now cannot try again for 6 months. If my levels, I pray, start to drop, and I get to zero, will it still be 6 months?

Any help, kind words, stories would be so appreciated xxxxx

@MustStopSnacking28 yeah it's utterly shit!

@Busybee32 it's 6 month from 0. It's because they don't know whether it's molar tissue or a new pregnancy. Hope you're okay

@Busybee32 hey, sorry that your going through this. Your timeline sounds really similar to mine, although I needed another ERPC as the MVA failed. Hopefully your levels are coming down really nicely. I was discharged from specialist centre (sheffield) a couple of weeks ago... which is about 4 months from the very start. Sheffield told me that once your urine levels are normal, they do a blood test four weeks from them and if they are clear then you will be discharged. That's where I'm currently at now, this is my first month trying again :) hope this gives you a bit of hope xx

@Busybee32, sorry to hear you are going through this, it's such a lot of information to take in isn't it. I hope your levels do drop quickly. From what I understand the follow up time can differ for partial molars? I'm not sure though - Charing Cross should be able to give you some more information on this.

@14down, I hope you are doing ok. I'm sorry you are having to deal with a second molar.

I have just had my histology results back (I had an ERPC at the end of January after molar was suspected in and early scan at the EPU) and it has been confirmed as a complete molar so I have been referred to Sheffield for follow up. My hcg level was very low when my gp did a blood test last week so I'm hoping they continue to drop/ stay low.

@MustStopSnacking28 I hope you are ok today, sending hugs

@14down I am so sorry you’re going through this twice. I really am so sorry you had to have chemo. Thank you so much for replying.

@ploopypleepy oh thank you so much! I can’t tell you what relief this brings me and I am so pleased for you. I really hope your TTC journey is kind. Do you know whether you will get monitored more in your next pregnancy due to this? Sorry, do you mean 4 months from when you had the first ERPC or 4 months from finding out the pregnancy was partial molar.

@Allnew2021 it really is so much information. I was in shock when I got the call on Monday. I couldn’t process it and then could rely it all back to my husband. I hope so and I really hope my levels drop quick. I have had a really swollen tummy and cramps and back pain since Thursday last week. I thought it was my period coming but now I think it must be related to this. Who knows!! Sorry yours is a complete molar but pleased you have now been referred and I am crossing everything that levels have dropped!

We were just getting out head around the missed miscarriage and the sadness. It was awful but knowing it is very common and 1 in 4 meant we had friends and family who had sadly experienced the same. With this, everyone is just shocked and most have never heard of it. Makes it really hard when it is so rare. Grateful for this group and the responses already! Thank you all xxxx

@Busybee32 it seems to vary with the information they provide but I also had a partial molar and they advised as my levels had dropped to normal in a blood test I would only need to send two urine samples (once every two weeks) and as long as they remained ok then I would be discharged. They did say that the follow up time can be a lot less now with a partial molar if everything is looking good so hopefully it won’t be too long for you.

It took so long for me to find out though that we didn’t know about the partial molar and had already started trying again and I am actually now pregnant again, it was confirmed today at an early scan at the EPU. I’m still super nervous as I had an early scan (although private so I don’t think it was a large good) last time and everything seemed well so I have learnt my lesson...

@Allnew2021 hope you’re doing ok as well!

@MustStopSnacking28 thank you so much for replying! That is amazing news. God, I’m so emotional! Reading your message made me tear up! So happy and so nice to hear a positive and that all is ok! I am sorry it took so long for them to tell you but I am pleased it has come out with a happy ending!

Really hoping my levels are low by the time I get the test. It’s so hard to not let your mind run away with you and worry about what is to come. Just want the first tests done so I know what my starting point is! Xxxx

@Busybee32 thank you! Yes I think I will be scanned at 6/7 weeks and maybe at 8 weeks? This is definitely what I will be pushing for anyway. My epu was great though so hopefully it should be fine. Sorry it was four months from my 13 week scan when I initially found out that the baby wasn't alive. So from my first ERPC probably 3 months! Just read you think your period is coming, that's a great sign ... You should be near normal already :) xx

@ploopypleepy oh that's great! Early scans will be so needed for reassurance. If we hadn't of had a private scan we would never have known. Yeah our EPU has actually been amazing and I feel very grateful for that!
That's really positive, thanks so much for sharing. 4 months from 13 weeks scan sounds more manageable than 6 months from now. Hoping my levels are low 🙏🏻 really praying it is my period coming but I'm worried it is linked this now. My tummy is incredibly bloated and tender and that is not like me. I did say this to the EPU but they didn't seem concerned. May ring Charing Cross again just to check what is normal, although I know everyone is so different, hard for them to know xxx

@Busybee32 yes, and charring cross has a great reputation so I think you will receive really good care from there too! No worries, I was exactly the same worrying about the long wait, but like the others have said it's much shorted for partials especially if your numbers are dropping already :). I also has a really sore tummy, I think so much has gone on, especially with your hormones that it's fairly normal. It might be worth doing a pregnancy test to see whether it's negative. I did these throughout, never thought i would be so happy to see a negative test. Xxx

@Busybee32 hopefully you will get your testing kit soon and they will be able to start monitoring asap. Fingers crossed for low levels!

@MustStopSnacking28 that's good news about the confirmed pregnancy today and one step closer for you. Hopefully everything will progress well from here, will you get another scan before 12 weeks?

@ploopypleepy good idea! So last Friday, 2 weeks post MVA it was a strong line on the test! Just did one this morning, so will be 3 weeks tomorrow and it's negative! This is the clue blue line one!!!! I feel so happy like you said to see a negative but my DH is saying it's a good sign but we need to wait for the bloods to see!! 😩 I just want some hope xxxx

@Allnew2021 thank you 🙏🏻 really hope so!! Xxx

@Busybee32 that's really great news.... I wasn't getting negatives for a couple of months (hence the second ERPC). So you are really on your way to normal now, which hopefully means your follow up should be nice and short :) let me know how you get on with your bloods xxxx

@ploopypleepy oh thanks so much! I really hope so! I will keep you updated! I will be thinking of you think month 🌈🤞🏻 xxx

Thank you for good wishes and good to hear you have a negative test @Busybee32! That sounds like a good sign and hopefully things are going back to normal already. I think I might book in for a private scan at about 10 weeks @Allnew2021 as it was such a shock to find out bad news at 12 weeks last time I think I would rather find out earlier if the worst has happened...I know it still could be bad news again at 12 weeks though. I am finding myself very negative this time and expecting the worst which I guess is self-preservation...I didn’t have this at all with my DS, didn’t even consider a miscarriage and obviously not a molar pregnancy! Really hope you are all doing ok