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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:
Figtree11 · 26/08/2024 08:37

Oh @CxCxTtc2024 i am so sorry to see you here. And really sorry you are having to go through chemo. How are you feeling?
I am doing ok thank you. I had a PMP in May, and fortunately it has been straight forward for me & I got discharged from Sheffield at the end of July. Sending you lots of love x

Georgia324 · 26/08/2024 08:46

@CxCxTtc2024 I'm so sorry you're having to go through chemo. I hope the stay at Charing Cross wasn't too difficult, but it's a lot to be separated from family with all the emotions running high. Whose care are you under? The molar Facebook group is amazing; a few of the girls on there have been my saviours. Do you mind my asking what your levels are now? How are you feeling mentally and physically from the MTX? Sending lots of love xxx

CxCxTtc2024 · 26/08/2024 09:57

@Georgia324 you know it actually wasn't too bad, the Olympics was on so I got very into that (I can't think when I've really watched a lot of sport before!), I also had a lot of work to do so had my laptop set up. Had a few visitors as well which was lovely. It went both really quickly and also dragged on forever, somehow. I'm under Prof Seckl, isn't everyone who is at CX under him?
When I was admitted I was on 79000 (rose in the 5 days since my prior blood test from 54000), it was 85000 when I was discharged, dropped to 14000 on my first prechemo bloods on 15/8, then 9900 on 20/8. That's the last result I've got so far, I'll be getting one tomorrow for 22/8, and I've got another test tomorrow and then Thurs to start chemo again on Friday.
I'm interested to see what my bloods are doing at my next full blood count, my white cells have dropped but still in the normal range, a couple of other changes but still all in range. I wonder if they will drop out of range or just stay at the low end.
I'm feeling okay, mornings are great, afternoons I'm exhausted if I don't have a nap. My eyes are gritty and dry and last week my eyelids puffed up but that's settled now.
Emotionally I actually am okay. Being sad about it isn't going to help anything.
If my first pregnancy had worked out, my edd is fast approaching. I guess I'll be a bit sad that day.
How are you? Whereabouts in the treatment are you?

Georgia324 · 26/08/2024 12:29

Oh the Olympics were perfectly timed! A once in 4 year opportunity - how "lucky" haha! Confused
Your drops sound really good, keep us posted but fingers crossed you'll get to negative soon. I finished chemo 2 months ago. Luckily I only needed 2 rounds to get to negative as I started low having had a second surgery. I struggled physically during treatment with the dry eyes, ulcers and fatigue plus some sickness, and I didn't work & just focused on myself, whether that was right or not I don't know. V glad you're doing well mentally & side effects are improving. Keep napping! All the very best x

Flowers1901 · 25/09/2024 15:35

I’m so glad I’ve come across this thread, it is bringing me comfort in such a sad place at the moment to read all of the positive outcomes.

My first, very much wanted pregnancy, at 36 we thought was sadly ending in miscarriage at 6 weeks then to add to this, I was told on Monday that it is a suspected molar pregnancy 😢 I’ve never even heard of this before and it is very scary. From what I’ve seen and read, I believe it may be a partial as you can see a fetus and fetal pole on my scan.

I am booked into the hospital Friday to have the surgery to remove everything. I’m just mindful of the time that I may have to wait to try again and I don’t feel that I have the time to spare as I’m getting older ☹️
My mental health is not in a good place right now, I’m struggling to process what it is actually going on and then there’s the added scare of could this turn into cancer 🤯

Reading everyone’s positive outcomes and happy endings gives me some hope 🌈

Figtree11 · 28/09/2024 11:21

@Flowers1901 i am so sorry you are going through this. I hope surgery goes as well as can be today.
I am almost 5 months post surgery for my partial molar, but feels just like yesterday. It’s hard enough grieving a loss, let alone dealing with this too

W1ll0WLouise · 18/10/2024 11:35

Hi everyone. I went for a private scan at 6 weeks to be told there is no signs of a baby there, however there looks like retained product of conception or he felt a partial molar and referred me to EPU. Fast forward to almost two weeks and yesterday I received a similar diagnosis of either the two, and am booked in for D&C on Tuesday which I am absolutely terrified for 😢 I have two daughters age 5 & 2 (both normal pregnancies) and am terrified of something happening to me under general as I’ve never had it before. Do you know if they could do it under local instead?

apart from finding out this awful news at the scan, ive not seemed to have any signs of a molar. No bleeding or spotting. My previous pregnancies I was very nauseas throughout the first trimester and with this the only symptom of pregnancy I’ve had are sore boobs! My first HCG at around 6.5 weeks was 8900

hope to hear from someone xxxx

Figtree11 · 18/10/2024 14:29

@W1ll0WLouise i am so sorry for your loss. It’s awful to deal with, let alone the possibility of it being molar.
I think they can do an MVA which is under local, but I’m not sure. My EPU recommended general for mine. I was be try nervous, I’d never had any sort of procedure in my life. But it was fine - if it was to happen again I’d have another d&c under general. It isn’t anything to be scared of ❤️
Hope all goes as well as can be. If you have any questions, let me know. I had a partial molar earlier this year and since been cleared to TTC again

Hope133 · 28/04/2025 01:08

Hi everyone, I was diagnosed with Complete MP and it was my first time having it. This was my 2nd pregnancy. First one is 6 yrs old now. I was wondering if anyone still rmmb these info based on your past MP experience (sorry i know it's not a good memory to recall.. :( ) and is it possible to share so I can benchmark with my hcg lvls that will be measured later? If you no longer have it, it is ok, any info or tips you think could help me pull through the agonizing moments till recovery will be very helpful too.

  1. What was your first drawn blood hcg lvl after D&C procedure
  1. How many days/wks past D&C was your first hcg taken (I'm still waiting for my nxt follow up to have hcg taken but it will be 1.5wks post D&C by then)
  1. How many wks pregnant since LMP when you had D&C done (mine was 8w+5d)
  1. When did your OB decide chemo is needed, based on what hcg lvl
  1. Any pregnancy stories to share after your full recovery and how long it took you to recover (I wish to conceive again to give my DS a sibling but I'm really worried of having a second molar pregnancy as my age is catching up..likely 41/42 by the time I'm cleared by OB)

Sorry for the many questions above. MP is new to me. I've read everythg i could find from Google but would really like to hear from people that been through this as nothing can be more true than hearing it directly from ppl who experienced it.

Georgia324 · 28/04/2025 07:06

Hi love, so sorry to hear you are going through this. Decisions on treatment aren't taken on hcg levels - these can vary hugely and higher hcg isn't necessarily worse - they are taken on whether levels are rising or dropping over 2 weekly tests. The best way of getting info about molar pregnancy is to look at the Charing Cross website -

www.hmole-chorio.org.uk

It has lots of info about when second surgeries are done, when you would be seen by the hospital to consider chemo etc. just sending this now then will return to read your message again xx

Georgia324 · 28/04/2025 07:10

I had 3 months of chemo, waited 6 months, and got pregnant immediately, currently 20 weeks (have scan tomorrow, eek). All going well. They would recommend 9 months to you based on age rather than 12 months I think. That's that they did for me. But if you don't need chemo (what type do you have do you know? If you saw a fetus broadly it's a Partial and if no fetal pole then Complete). Partials only have 1-2% chance of needing chemo and Complete 15-20% chance. If you don't need chemo then the wait is less. For partials it's a month after you're cleared, so probably 3 months total post D&C on average. For Complete is depends how long it takes for hcg to do down. There isn't really a way of predicting this unfortunately. Keep us posted xxx
HIGHLY recommend joining My Molar Pregnancy group on Facebook which is amazingly supportive and I've met 2 good pals there who are both now pregnant
All the very best

Georgia324 · 28/04/2025 07:12

My D&C was at 12 weeks and my hcg was tested 2 weeks later. If Charing Cross haven't been in touch already to confirm diagnosis by then I would request your hospital or GP does a test and explain the circumstances. You can also ask for your hcg to be tested at surgery & see if they will do it. I had a Partial so they didn't actually spot it until the pathology came back after my D&C. Until then it was just a Missed miscarriage xx

Hope133 · 03/05/2025 12:14

Georgia324 · 28/04/2025 07:10

I had 3 months of chemo, waited 6 months, and got pregnant immediately, currently 20 weeks (have scan tomorrow, eek). All going well. They would recommend 9 months to you based on age rather than 12 months I think. That's that they did for me. But if you don't need chemo (what type do you have do you know? If you saw a fetus broadly it's a Partial and if no fetal pole then Complete). Partials only have 1-2% chance of needing chemo and Complete 15-20% chance. If you don't need chemo then the wait is less. For partials it's a month after you're cleared, so probably 3 months total post D&C on average. For Complete is depends how long it takes for hcg to do down. There isn't really a way of predicting this unfortunately. Keep us posted xxx
HIGHLY recommend joining My Molar Pregnancy group on Facebook which is amazingly supportive and I've met 2 good pals there who are both now pregnant
All the very best

Thank you so much @Georgia324for sharing your experience (though its not a good experience that everyone with molar like to have). The link you shared from Charing Cross was very informative too. So much information to read and digest there! I have yet to join the FB group as I do not want my family to worry when they see me part of the group. So I'm relying on Mumsnet friends and Google here to seek info and advice, which has been great and very helpful so far ❤️
Mine was a Complete type. Hence, very worried of needing chemo. I've gotten my first post D&C blood test result which is ~1400 mIU/mL. This was taken ~1.5wks post D&C and I was ~8.5wks pregnant when i had my D&C. Second blood test is next week. I really wish the hcg would go down to 2 digits soon. Do you rmmb at approx what hcg lvl your doctor decided chemo is needed?
I'm so happy for you (20 wks!) and it's awesome to hear successful pregnancy stories especially when we had a molar before. Did you have any nausea/bleeding/challenges that freaks you out during first trimester due to previous MP experience? I think if I'm pregnant again after this, I will be worried of another molar everyday an anxiously waiting for scan results 😬

Sending love and best wishes to you for a smooth delivery!

Georgia324 · 03/05/2025 12:47

The risk is still only about 10% I think with a Complete and your levels are looking really good! My levels were 5,000 but it's more about the trend - as long as they are going down the docs aren't worried and sometimes it takes time but that isn't a bad sign, everyone's bodies are different. From what you've said I would be surprised if you needed chemo. Keep positive!
I was very anxious & think I will be until he's born tbh (touch wood). But one step at a time, and time is a healer that's for sure. 20 week scan was all good so that will give me a week or two of peace, lol. Fingers crossed you'll be cleared in a month or so & can move on XXX

Georgia324 · 08/05/2025 12:12

Hi @Hope133 have you had your next levels back yet? Keeping fingers crossed for you (but know it's looking good!!)

Hope133 · 09/05/2025 01:12

Georgia324 · 03/05/2025 12:47

The risk is still only about 10% I think with a Complete and your levels are looking really good! My levels were 5,000 but it's more about the trend - as long as they are going down the docs aren't worried and sometimes it takes time but that isn't a bad sign, everyone's bodies are different. From what you've said I would be surprised if you needed chemo. Keep positive!
I was very anxious & think I will be until he's born tbh (touch wood). But one step at a time, and time is a healer that's for sure. 20 week scan was all good so that will give me a week or two of peace, lol. Fingers crossed you'll be cleared in a month or so & can move on XXX

So sorry i missed your msg here @Georgia324! Happy to hear that your 20 wks scan is doing well ❤️ And yes I got my hcg result. Looking good so far, it's down to ~200! Woohoo! Another test next week. I hope it won't stay plateau or rise. Wish me luck~ xoxo

Hope133 · 17/05/2025 02:41

Hi everyone, may I know when did you have your first menstruation after molar pregnancy? My hcg levels are not zero yet but down to 45mIU/L as of last week and I started to have bleeding that looks like menstruation today. Is it normal? 😐

Maxdoggy · 17/05/2025 07:06

I think my levels were about 100 , which is still quite high for a period. But yes, at 45 it could definitely be your period. Sounds like good progress! 👏 😃

Georgia324 · 17/05/2025 08:19

Yes very normal, below 100 is when it often starts. That's great news! I remember never being so happy to get my period (what a crazy fertility ride this is!)

Hope133 · 18/05/2025 16:24

Thank you @Maxdoggy, @Georgia324for your responses and encouragement. It's a relief to know that bleeding before hcg turns zero is normal. I am so glad to come across so many supportive members here and learning alot from everyone's experience (though this ain't a good one that all of us want to experience). I was clueless, worried, and sad when I first learned that I had a molar. Thanks for staying with me, patiently reading my post and responding to it. I think anyone who has been through a MP is very strong mentally and physically. Sending hugs and love to everyone here ❤️❤️

AnotherStory23 · 19/05/2025 14:08

@Hope133 It's such a tough thing but you can get through it. And yes, thank god for mumsnet!

OP posts:
Kkk17 · 24/07/2025 08:10

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. 💐

Stargirl1701 sorry for your mums loss. Did she go on to have anymore children xx

Georgia324 · 15/08/2025 20:40

How are you @Hope133 ?

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