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!

Hey!! I'm glad to find someone else who has also gone through this. First of all I'm really sorry this has happened... going through what you first think is a miscarriage to then find out it was molar is honesty awful. I was the same as you... I lay there every night for a couple of weeks in the dark not being able to sleep, and spent hours and hours a day researching.
Just to give you some reassurance I am on the other side of this now! I found out there was no heartbeat back in October. I then had 2 surgical procedures to remove the molar tissue however this did not work. I ended up having a massive haemorrhage last month and then a week after that passed the molar tissue. I'm having weekly urine tests and have just got to normal which feels great. So from finding about about the miscarriage in October i am now totally back to normal.
The Likelihood is that this will be the same for you too... it may even take you less time!

We're you trying to conceive, would this have been your first baby?

Feel free to ask me anything, I wish I could have had someone to
Speak to x

Hi, wow you've really been through it!! I'm so glad you're on the other side now, it's really such a mental and physical battle.

To answer your questions, this was a planned pregnancy and we have a son already. He took years to concieve as I have endometriosis but surgery worked!

I was misdiagnosed with a cornual ectopic initially and then admitted to hospital where nobody could make head nor tails of my high HCG and had several scans of people being very rude and vague about it being "a pregnancy gone wrong" but no mention of molar. I didn't find out until 10 days later it was molar and had the procedure to remove it that day under local but he thinks partial probably because there was a sac too?

How long from your diagnosis did the laboratory confirm it and do you get a call or a letter from the clinic?? I booked my first bloods for Monday. Do I just follow up on these too or will someone be in touch with me about them?

I was really scared about the prospect of chemotherapy but I've now read its a much reduced risk with a partial so that's a relief.

It is ... but that's great to hear the surgery worked. Mine was also partial as I saw a heartbeat at 7 weeks. The surgeries failed for me due to the size of the placenta, I was 13 weeks so it had grown too large. I only realised they had both failed when I was still testing positive 3 weeks after each!

Wow, I bet that was scary not knowing what was happening. I think they are really quite rare so that the majority of doctors havnt come across many molars before.

I got the diagnosis after about 6 weeks... they sped up my histology after the second failed ERPC. However as yours is suspected the histology should be faster than that. You should get a call from the clinic asking you to come in for a face to face. After that you will be referred to either Weston park hospital in sheffield or charring cross in London, depending on whether your north or south. I was sheffield. They will they send out the urine tests and follow up with you every couple of weeks until your hcg is at normal. They are really helpful and I've heard great things about charring cross also. Don't worry too much about chemo yet, with a partial I think it's less than 1% that need chemo!

Hi, I have also just found out that I have had a partial molar pregnancy. I had a MMC in October 2020 but only found out properly about the molar pregnancy last week as histolgy for me was very very slow, and then a second opinion from one of the specialist clinics in Sheffield was needed. In my case I have not had any negative side effects and would have no idea about the partial molar if it wasn't for histology confirming. My blood test from last week came back as normal and I will now need to be monitored with urine tests for a few weeks and hopefully that will be it then! In case it makes you to feel better, the specialist nurse that I spoke to said for partial molar pregnancies follow up times are nowhere near as long as they used to be (initially I was told I would need six months of monitioring by the EPU, they are not specialists though). My concern was trying again but I am hoping to be able to soon now. My advice would definitely be to try to speak to a specialist nurse if possible as the lady I spoke to was so kind a reassuring, after such a shock it was so welcome to have someone so helpful.

Oh my goodness...such long wait times for you both. The dr said he requested it urgently from labs but that could be 10days which didn't seem very urgent to me but compared to you both it is!
I think because I'm in Scotland I am through Dundee clinic. Its so reassuring to speak to you both and although you've been through bad times it's not been nearly as bad as what I've seen on Facebook!
And yes, that is good news about follow up times! My dr said 6months to me but I assume that's for complete molars. I was really quite nervous but I think I'm actually lucky if this is a partial like he suspects!!

This seems to have cast a shadow on all pregnancy announcements. I love the "Is this a BFP?" threads when they turn out well...now all I can think is that good strong line doesn't mean it will be ok. That sigh of relief that comes with a strong progression line is all gone :( :(

I think you will be fine, your surgery went well so that's really positive. I'm actually coming off the pill this month and starting trying again, the follow up time is much less for partial. But yeah I know ... my next pregnancy is going to be filled with anxiety. Takes away from what should be a happy time

Ahhh i hate myself right now. I was totally rude to the nurse taking my blood. I was told I would be having weekly bloods but there is nothing on the system and apparently not a letter from the hospital but I.dont know if I trust her! She said maby it would depend on this result and I ended up saying to her "well its not going to be zero and I was told it should be monitored to check for retained tissue etc" . I'm so depressed over this and it's because of not having having clear plan again. I'm the type of person that does not cope well with not knowing :(

@LuluF91 I know how you feel, everyone seems to say different things. I think once your histology comes back hopefully soon... this is when you will get told exactly what happens and a proper plan of action. Don't be hard on yourself your going through an awful time!

I can't wait for those results. I'm going back to work this Friday and I'm not sure how I'm going to cope with all the condolences and having to explain what a molar pregnancy is as barely anyone has heard of it

I hope your return to work is ok @LuluF91anf that maybe you will find comfort in talking to colleagues? If not just don’t tell them any details, it’s your health and is as private as you want it to be!

I have actually had a positive test this morning and now stressing in case it’s the molar re-emerging...my husband and I started trying this month as we weren’t told until after I ovulated! Hoping it’s all ok

You need to book in with the EPU for an early scan. That's poor on their part that they didn't advise you not to try concieve until histology reports were back and complicates things now for monitoring your blood. I really hope everything will be ok for you, was is a complete or partial?

My colleagues are fairly aware of my situation as I haven't been in work for 3 weeks as that was when I initially started bleeding but never fully miscarried. I don't really have a problem explaining to people but I think repeating the diagnosis and explaining it to many people throughout the day could be taxing :( I feel like I want people to know it wasn't a miscarriage, partly because it's not over yet with the ongoing testing etc and partly to educate them.

@MustStopSnacking28 just a thought, did you get a negative HPT after you lost your pregnancy? If not I would be weary that it was positive due to to HCG in your system. Sorry I don't mean to put a downer on things :(

@LuluF91 yes luckily I had a blood test early last week and the hCg was normal then so I am hoping it’s actually a normal positive but I have booked an early scan with the EPU already. I rang Sheffield specialist nurses again (they must be sick of me!) and she was very helpful and said she thinks it sounds like a normal new pregnancy but obviously they can’t be sure so I do need the early scan. I hope this time is a more positive outcome than last time but I am not going to get my hopes up just in case...

It was really bad I think that they didn’t let me know any earlier. They were waiting for a second opinion as they didn’t want to worry me if it turned out not to be a molar but obviously that could now be a bit dangerous

I hope your colleagues will be really supportive if they know what’s going on any miscarriage is awful but I do feel this added stress makes it maybe even more difficult.

It is bad...i was told by a consultant that despite even if you are suspected of something you should be treated as such until proven otherwise. It does sound good news in general for you though with regards to the blood test and odds are still in your favour!!

They will be supportive I'm sure. It's just a struggle. I downplay it to myself and call it the pregnancy then I have a total cry over "my baby". Such a roller coaster

Yes that does sound sensible. I can see if from both points of view but I am worried now in case it is the molar pregnancy hCg playing up and actually not a new pregnancy...impossible to know until the early scan I suppose I do hope it isn’t the molar pregnancy as I don’t want more monitoring and treatment. I am trying to not really think about it until 24th Feb!

I don’t think you should downplay it, your feelings are absolutely valid and you imagine how your life will be with a baby very soon after realising you’re pregnant (in my experience anyway). It is a rollercoaster though!

I really hope it's good news for you and the early scan will be a positive one :) I can only imagine how nerve wracking this must be for you.

Yeah...there I was thinking about double buggies etc when really...🤷‍♀️ I had a very positive result from my first bloods though! Down from 70,000 to 5,000!

@SpiceGirl93 another thread here in case you want more people to discuss things with !

Hi Girls
Hope you don’t mind me joining! I had surgery in December for my suspected partial molar, I got the results back yesterday (8 weeks after surgery and a lot of chasing) and it was confirmed partial.
First pregnancy, like you ladies I was taking my sickness and swollen bump as a positive and didn’t think anything was wrong :( I had no bleeding whatsoever so to find out was a shock. I was a mess for a good 2/3 weeks and still am researching all the time for new answers. I really want to start trying again! :(
I have been monitored by my EPU and my
Last bloods came back at 17 which is good but it has taken me this long to get a negative test! My levels before surgery were a whopping 142,000!! I had my first period last week which I’m taking as a good sign but still can’t help worry.
When shall I expect to hear from my specialised hospital? I just want to be told that I’m fine and be discharged!
I hope your new pregnancy is going well @MustStopSnacking28 and that your levels are dropping @LuluF91 :) xx

Hi @SpiceGirl93 sorry I haven’t replied yet, and very sorry to hear you have also had a molar pregnancy. I hope you are doing ok it seems to vary with how quickly you might hear from your specialist centre but Sheffield were very quick for me so I hope you won’t have lots more waiting. Your result from the blood test sounds promising at least, hopefully the monitoring won’t last for too long. I am feeling fine compared to the molar pregnancy as I was soooo sick with that, obviously still worry as maybe no symptoms is also a bad sign but trying not to stress too much until the early scan can give a bit more information. Just seems to be very much a waiting game for everything relating to molar pregnancies!

Hi there,
Sorry I was back at work Friday to Sunday and do 12hour shifts so I couldn't reply. @SpiceGirl93 that's great news about your levels but such a delay in diagnosis. I am disheartened at still having a bump just now. How do you feel about trying to concieve once you get the all clear? I want to but the thought right now is too much.
@MustStopSnacking28 when is your scan? I can imagine it is hard not to overtjink everything as you will be hyper aware of your body. I felt it in my gut something was very wrong with this pregnancy although pain etc so I'd trust your instincts xxxx

Hi,
I've never posted on a forum before but reading about others experiences has really helped me recently so I hope it is ok to join the discussion.

I was sent for an early scan at the end of January by my midwife, at what would have been just over 9 weeks. I wasn't overly concerned as I'd only had very minor spotting which the midwife had said can occur in early pregnancy but she just wanted to me get checked to be sure.
Anyway during the scan the tech said she couldn't see evidence of a 9 week pregnancy so needed to do an internal scan. During this she called her colleague in to review the scan and then told me that unfortunately this was not a successful pregnancy and that she thinks it might be something called a molar pregnancy.

I was taken to the ward waiting room to wait to see a consultant for further tests. After waiting nearly 8 hours a nurse said they wanted to keep me in overnight and then I was finally seen by the consultant (this was as gone 1am). She explained a bit more about molar pregnancies (I had never heard of this before) and booked me for an ERPC the next day. I stayed overnight and had the procedure the next afternoon. I was told that some of the tissue would be sent to be tested to confirm the molar and I would hear back in 1-2 weeks and referred to Sheffield if needed.

I had very minimal bleeding for 2 days after and then some light spotting for another couple of days. It's been just over 2 weeks now and I haven't heard anything. I've left a message with the early pregnancy unit where I had the scan to ask for a call back but nothing yet. I'm not sure whether to ring my GP or try the hospital again - how long did it take for you all to get your initial results back? I just feel kind of 'stuck' right now with the uncertainty at the moment. Sorry for the long post!

Hey @Allnew2021 sorry to hear your going through this, I had a partially molar pregnancy, but because this wasn't suspected it too I a long time for my histology to come back ... the usual (without suspected molar) is minimum 6 weeks so with yours being suspected molar it will probably be 2/3weeks? As soon as I got my diagnosis I was called in by the EPU for a discussion and about 10 days after that sheffield got in touch. It all seemed to go on forever. Hopefully you will hear something in the next couple of weeks! Xx

@ploopypleepy Thank you for taking time to respond. It's frustrating having all this uncertainty on top of loosing a pregnancy, it's such a lot to process. Hopefully I will hear something in the next week if not I will try the EPU again. I've looked back over the thread and what a lot you went through! I'm pleased that you have come through the other side and hopefully things are more positive now xx

Hi @Allnew2021 so sorry you have gone through this too. It unfortunately does seem to take some time but I would imagine it will be a bit faster as they suspected it immediately at the scan? In my case it took 3 months but I think that was due to a combination of COVID and also a second opinion was needed from Sheffield so there was a big delay. In a way I suppose it was easier as I wasn’t waiting for results, I can imagine it’s really hard just waiting I do hope you hear back soon and that they can then monitor you if necessary. If it helps, my results were back to normal when I had a blood test a few weeks ago and the specialist nurse from Sheffield then said I would only need around a month of monitoring as long as the urine tests I sent back were normal. So hopefully it won’t be months and months of monitoring which is often what is described on Dr Google! Try and look after yourself