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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.

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AnotherStory23 · 18/10/2022 17:37

Thought I might bump....would be very happy to speak with people who have been recently diagnosed/or would love to speak to those who have gone on to have normal pregnancies!

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stargirl1701 · 18/10/2022 17:45

My late Mum experienced a molar pregnancy in 1981 or 1982 after both myself and my brother were born. She didn't have any long lasting negative health issues from it.

I wish you all the best. 💐

AnotherStory23 · 18/10/2022 17:52

Thank you xx

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octoberweather · 18/10/2022 18:28

I haven't heard of it before. Are you still at risk for developing cancer?

HelenJenn · 10/11/2022 23:08

Hi,
I have just read your post and can relate. So sorry to hear about your awful experience, it is such a rollercoaster isn’t it.
I had an ERPC on 10th Oct so the day after you wrote your post. Three ultrasound scans and a hcg reading of 250,460iU at 7 weeks, they seemed pretty sure it was molar but needed histology to be sure. Today I had the call from the consultant to confirm full molar. I am being transferred to the Sheffield specialist centre as we live in the Midlands. A bit unsure what to expect at the minute but I’m relieved to read people seem to have good experiences of these specialist sites. I hope your results stay low for you and you can go on to have a successful pregnancy in the future. Sending my best wishes to you and others going through this too xx

Edwintheboyscout · 10/11/2022 23:20

Hello. I just read your post and the reply. I'm so sorry to hear you are both going through this as it can feel both scary and isolating. I understand as I experienced a molar pregnancy just over 20 years ago. It was very scary at the time as I had never heard of it before and I was quite young. But I got through it and went on to have a wonderful son who is now 20. I know that you will both come through this and I'd be happy to chat if I can answer any of your questions - you can private message me if you like. Best wishes.

AnotherStory23 · 11/11/2022 08:43

Hi @HelenJenn I'm so sorry to hear you are going through this too - was it also your first pregnancy? I hope you are recovering okay from the surgery, and taking the time you need to heal. I think every specialist centre does mostly the same thing, sends a box through the post, with vials for you to give urine and blood, which you then send back. You then call up for your results a few days later. I was really amazed at what a good and clear system it is, and the women I spoke to on the phone were so lovely. They normally offer counselling, but the position has been vacant for a while, so the head nurse offered to speak to me instead, and she listened to me cry and worry for over an hour.

Thank you for your kind words - so far, yes they've stayed low. Please drop me a message if you'd like to talk more. Or happy to answer any more questions that you have.

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AnotherStory23 · 11/11/2022 08:46

@Edwintheboyscout Thank you so much for your response, and I'm sorry you experienced this too. It's such a relief to know that you went on to have a child - at the moment, this feels like the biggest thing, that it won't ever happen for me. Yes, if I do think of anything, perhaps I could message?
It's so good to speak to other people who this has happened to - even though it's a terrible club to be in!

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WoolerOwl · 11/11/2022 09:15

I have been through this too (though partial rather than full molar), twenty years ago. It was incredibly sad. I felt as if my body had betrayed me by making out that there was still a baby there (and I had horrendous sickness) but when we got to the 12 week scan it was clear that there was no heart beat. And then, on top of that, finding out that there was a cancer risk just made it all even worse. And on top of that, the hospital handled it really badly and didn't realize what it was at first -- my histology results from my D&C weren't read until I was back in hospital a few months later with another early miscarriage. I felt betrayed and bereft. I had the follow up monitoring through Sheffield's specialist unit (the boxes through the post) and they were great. For a long while after, I was very anxious about my health as I felt that I couldn't trust my own body. I had another "normal" miscarriage after the first two, and the situation felt hopeless for a long while. However, I am now the mother of three lovely children, the first one just at university. It was a horrible time, and I remember the sadness acutely, but it is possible to get beyond it. If you have any questions, or just want to express how you are feeling, I'm happy to chat. Sending hugs.

AnotherStory23 · 11/11/2022 11:28

@WoolerOwl Thank you for your message and for sharing your journey. Sounds like there must have been some hard moments for you, especially them messing up your results! How horrible. One of the worst things for me was how slow they were at telling me - I didn't get my diagnosis until after 5 weeks after my op, and it was only after much chasing and emailing.
I think I did fall pregnant again recently, totally by accident, though it turned out to be a chemical - which I really could have done without after everything.
Thank you so much for your offer of a message - I may well take you up on that.

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Fifthtimelucky · 11/11/2022 11:54

A good friend had a molar pregnancy many years ago. Neither of us had ever heard of one before then. She got to 21 weeks and was very unwell.

It was her second pregnancy. The first one was healthy and she went on to have two more healthy pregnancies (the first of which was sooner than the doctors advised). She's in her 60s and her children are all in their 20s. None of them have any health problems, which I hope will help to reassure you.

Maxdoggy · 04/01/2023 09:21

I’m so sorry you’re going through this.

I too was diagnosed with a (complete) molar pregnancy at the end of July; it was quite terrifying at the start.

Are you in the Facebook group called “My molar pregnancy support group”? I have found it a very helpful source of information and support xx

Molar pregnancy - story for others
Ree3boys · 13/01/2023 23:01

My story pretty much matches yours
I had my 1st son aged 18 in Jan 2009, I then had a molar pregnancy I'm march 2010, I then went on to have my 2nd son in Aug 2011 .. years passed, I had my 3rd son Jan 2021, I'm not 5 weeks pregnant and I'm so anxious waiting for my scan

AnotherStory23 · 14/01/2023 17:29

@Maxdoggy I'd missed your message. Sorry to hear you have gone through this too - it's really the absolute worst thing. How are you getting on now?

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AnotherStory23 · 14/01/2023 17:31

@Maxdoggy And no, not joined as I don't used Facebook, but was also a bit nervous about reading about too many other experiences in case a lot of them were negative!

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Maxdoggy · 14/01/2023 19:33

AnotherStory23 · 14/01/2023 17:29

@Maxdoggy I'd missed your message. Sorry to hear you have gone through this too - it's really the absolute worst thing. How are you getting on now?

I’m ok. I hit negative at end of October so Charing Cross have advised waiting til end of April to TTC (all being well). So I suppose I’ve been lucky in relative terms. I’ve booked in a ton of stuff you can’t do whilst pregnant (skiing etc) in the meantime 🙄
How are you getting on?

Maxdoggy · 14/01/2023 19:35

AnotherStory23 · 14/01/2023 17:31

@Maxdoggy And no, not joined as I don't used Facebook, but was also a bit nervous about reading about too many other experiences in case a lot of them were negative!

They’re super helpful on there. It feels like there are lots of people who’ve had to do chemo but I think they just post more. There is also a sister group (“After my molar pregnancy”) , which people join subsequently once they hit negative and are signed off from treatment or monitoring. I’m not in it as not yet at the point in my journey but will prob join it when I get there.x

AnotherStory23 · 15/01/2023 08:41

@Maxdoggy I'm very glad to hear about your negative. And those plans sound like a really good idea! I hope you are not feeling too bad - I know I'm still dealing with the trauma of it. Going to start counselling soon I think.

I am actually pregnant, though this is quicker than is advised, as I was supposed to have two more months of follow-up. I had a scan at 6 and a half weeks to make sure it wasn't another molar, and have another next week at 9 and a half. Finding this pregnancy extremely anxiety-inducing (as I'm sure you can imagine) but so far, a great comfort has been it is very, very different in terms of my symptoms. Trying to take it a day at a time

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AnotherStory23 · 15/01/2023 08:42

@Ree3boys The formatting of your message meant I couldn't read it properly! I'm sorry to hear you are feeling anxious, but the fact you've had three successful pregnancies is a really good sign I'm sure. When is your scan?

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Snoops123 · 17/04/2023 21:16

Hi Everyone
Just wanted to let everyone who is struggling right now with the horrendous wait for HCG results to come down - there is light at the end of the tunnel. I was had a complete molar pregnancy, early 2017 - was awful - and it came back after they removed the pregnancy which seemed all the more torturous. BUT after chemo HCG went down - finally - and now have 2 lovely babies to add to the two older ones that I had prior to the molar.
I know how bad the feeling is - it’s all consuming and seems so unfair - just wanted to let you know it is possible to get past it and have successful pregnancies afterwards. If anyone feels the need to talk, ask questions please feel free to message me - I don’t mind. I remember the endless trawling of the internet and finding barely anything to reassure me ☺️😍

AnotherStory23 · 18/04/2023 13:05

@Snoops123 Thank you so much for sharing your experience. This is why I started this thread, as a way of collecting some positive experiences for those who are currently going through it. So glad to hear you went on to have two pregnancies after! I'm currently 22 weeks and though still very nervous, I'm relaxing a little more into it

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helloblodyn · 05/05/2023 20:00

@Snoops123 i just wanted to joint this thread as it seems current. I've just had a complete molar diagnosis. The grief of a missed miscarriage was bad enough and i'd only started to come to terms with it this week when i was called and told about the molar.
I'll be referred to sheffield. I had a d+c 2 weeks ago and they said my hcg is 128 now. I'm bot sure what it was before and whether this is a decent level for this stage.
I'm struggling that a much wanted pregnancy was never a baby at all. I'd bought a rose to remember the lost baby but now I feel foolish.
Im also struggling to think this was an issue with my egg if it had no chromosomes in and im anxious of future issues. Thanks to anyone for reading x

Snoops123 · 05/05/2023 20:23

You don’t need to feel foolish!! You do whatever you need to do to get you through this horrendous time! And a rose is a lovely idea anyway.
From what I remember 128 would be pretty good so that a good thing. The numbers just have to keep dropping 🤞🏼. They refer everyone to Sheffield I think but hopefully you’ll not actually have to go as long as your HCG keeps dropping - I really hope it does for you. They are perfectly happy for you to ring them and talk to them at Sheffield though if you have any issues or questions, especially about the ‘numbers’. We had a lovely nurse named Kam who was amazing. It will seem like a never ending wait for numbers to go down - I remember my whole life was consumed by it - I can only say it will get better with time.
The likelihood of it happening again is super slim aswell - from what I was told, I was under the impression 2 sperm decided to take up residence in the egg and kick my chromosome bits out, not my fault at all - that was obviously never going to work but it is quite rare so I’m sure 🤞🏼 you’ll go on to have normal pregnancies - even if worse case it came down to the chemo - there is light as the end of the tunnel - it just seems such a long way off right now. Try and keep busy, distracted and positive. Sending lots of love and if you need to talk feel free to message❤️

helloblodyn · 06/05/2023 07:18

@Snoops123 thank you so much for taking the time to answer me. Are you doing well now?
I already have a little girl so I'm hopeful all will be ok. It's the waiting... if i could check my hcg every day myself i would!!

AnotherStory23 · 06/05/2023 10:03

@helloblodyn I'm so sorry to hear that you've gone through this, but very glad you've found this thread. I exactly know what you mean about feeling strange that with a complete molar it was never a baby, but it was still the idea of a baby, and that's just as important I think. I did feel very responsible because, as you say, with a complete molar the egg has no genetic material when its fertilised so I felt angry with my body that it had done something so wrong. But then I also came to really appreciate my body as it healed and recovered.
Those numbers sound really good! I was referred to Charing Cross in London, but I think that the system is the same everywhere. You get sent a box for your blood and urine to be tested every two weeks and then call for the results. Yes the waiting is awful, but you will get through it honestly. Please do message me if you'd like any more info or to chat - I tried to be as thorough as possible in my original post but happy to add more

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