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Partial Molar Pregnancy and aftercare

(42 Posts)
stillhangingon Thu 02-Jan-20 17:28:36

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

OP’s posts: |
Nerdy123 Tue 07-Jan-20 00:15:43

@stillhangingon im someone who is being monitored after having a complete molar in the UK. You need to be monitored for complete and partial. If they suspected a partial they should have then sent the product for testing. Please call up your hospital and if not call your local centre which for me is the London Charring Cross and explain the situation.
If you got your periods chances are your HCG was low because otherwise it wont come on. There is a difference between Molar bleeds and period bleeds. Period bleed does not gush out like blood on tap and stop randomely. Or just wiping blood that disappears after one wipe.
Your periods may be all over because of the anxiety. Also i want to assure you that as bad as it sounds this is very curable. Even for those that dont realise for a few years! Please dont panic and call your hospital and demand a formal response. If they never sent anything for testing call your local centre and get checked. Another test is to pee on a pregnancy test. If its positive then you have some remaining cells. Again if you need help etc i can help. Goodluck

Nerdy123 Tue 07-Jan-20 00:18:35

@stillhangingon also you can even go to your hospital and request a hcg blood test. That isnt the same as the one the Charring cross mola centres do their tests are more “thorough” But its still a very good indicator if its positive then you need some tests doing (even if negative but maybe you will be a little calmer). I got charring cross to call my hospital and get them to do it and provide me results as i was so anxious when i found out. It can be done. So there is a few ways they can support you.

Nerdy123 Tue 07-Jan-20 00:24:04

Im sure your going to be ok. Also dont panic if you do see a positive hcg pee test or blood test it may be unrelated but dont bother with GP see if you can call hospital early pregnancy unit yourself.

stillhangingon Tue 07-Jan-20 00:40:49

@Nerdy123 Firstly thank you so so much for your response. I really appreciate it. I’m so sorry that you had to go through this also. It really is a horrible experience and seemingly not that common at all so it is difficult to find people to talk to about it who might understand.

I just had a 50 day cycle and started to bleed today. However as you said, it stopped within the hour suddenly. It was very light but bright red and didn’t seem normal at all. Like heavy spotting. Other than this cycle, after the partial molar pregnancy I had pretty regular periods. I have done pregnancy tests and all have been negative so no HCG.

I think I am still definitely going to ask for a blood test and ask for possibly a scan to make sure that everything has gone back to normal. I just found it so nerve wracking that they didn’t contact me at all afterward. Again thank you so so much for your help. I really hope everything works out for you thanks

OP’s posts: |
Nerdy123 Tue 07-Jan-20 07:29:42

@stillhangingon thankyou and no worries. I think it may be just be a one off then but good to still pick it up to get a definitive answer. Better its officially on your records either ways. Im sure all will be ok. I am annoyed that the hospital didnt tell you its os irresponsible of them. Goodluck and there isnt many of us but we can all help one another so you always have someone! smile

Nerdy123 Tue 07-Jan-20 08:01:24

@stillhangingon be aware that sometimes the hospital staff dont pick up molar pregnancys on scan. Despite me having brown discharge and going twice for a scan and even the operation they didnt know until 8 weeks after when my results had to go off to Charring Cross for further testing. I also had the most senior and oldest sonographer in the citys hospital and even she didnt know it was a molar at that point.
So while you make progress do contact Charring Cross and if need be complete one of their blood and urine tests (if the hospital havent got the confirmation that it was a partial or not). Those tests will reveal all.

Watt564 Fri 12-Jun-20 18:34:14

Hiya lovely how are you now? I found out I had a complete molar pregnancy when I went to my 12 week scan in March , had the op and have been monitored every 2 weeks with bloods and urine , my hormone levels were coming down and looking good until I had my first period 3 weeks ago (well I thought it was ) but have been bleeding on and off since . Charing Cross rang me yesterday and asked if I was pregnant as my levels have gone through the roof! So god knows what’s going on!
Molar pregnancy’s are not common so it’s hard to find other stories to read about , it’s not a very nice thing to go through so I feel for you! Hope your ok now lovely x

Leaf87 Fri 12-Jun-20 21:53:35

Hi @Watt564 I am currently being treated by charing cross for a partial mole. I had a MMC at 11+5 back at the end of march. Hospital only told me a month or so ago about it. I think everything was a bit slow due to covid HCG still high so on two weekly monitoring. Like you say it's really hard to find anyone in the same(ish) boat.
@Nerdy123 are you still being monitored or have you been given the all clear?? If you have been discharged how long roughly did it for your hormones to come down??

Nerdy123 Fri 12-Jun-20 23:01:36

Hi Ladies @watt564 @leaf87 sorry to hear of your losses and sorry to hear your in this boat i know it can be terrifying. I was 10 weeks when i had an operation. By the time i found out i had a complete molar pregnancy it had been 2 months + 1 week and my levels had come down on the first test and i am now discharged after 6 months of monitoring.
But i will say pre being told i have a molar pregnancy, im guessing my levels would have been high as i randomely started bleeding/gushing and in pain one day and then one day randomely wiped blood which went away after a few wipes. At that point when i called my local hospital they just said after the op its just “product” and body cleaning itself. That was not the case as i found out two months later it was a molar. So atleast allow yourself two months perhaps to see the levels drop?
@watt564 it can be lonely and worrying but i got to the point where i researched all the scariest of situations on all forums and found the outcome even in those was positive. This is highly curable so even if Charring Cross or your hub calls you in for treatment try to remain calm. The situations its harder in is when someones not aware for 20 years.
In some cases the levels go down and up but give your body time to adjust but also keep contact with your Molar hospital dont ignore any signs of gushing blood, intermittent bleeding, pain, pregnancy symptoms like morning sickness, food aversion or a weird constant cough.
If you have any others questions or just want to chat message here.

Leaf87 Sat 13-Jun-20 10:29:15

@Nerdy123 thank you so much, my D&C was 10 weeks ago now hormone levels at 10 in blood and 65 in urine. I have another test due Wednesday they are moving in the right direction but still high. I have had one Af since and should be due another in 5 days so I will see where I am. I had terrible what I thought may be ovulation pains this cycle back ache and period like pains for two days then nothing since.
It was such a shock when they called to tell me, If you dont mind me asking are you trying again now you have the all clear??
It was first pregnacey and I am 33 so I am keen to try again as soon as we can.... when ever that maybe!
Sorry for the long post your the first person I have spoken two who has been here!

Nerdy123 Sat 13-Jun-20 17:17:11

@leaf87 im the same age as you no kids but i have had 2 early misscarriages this was my third attempt and it turned into molar so i will be heading the IVF way as this was my last attempt naturally. With Covid-19 im just a little reluctant to step into a hospital. If i was to try naturally i would have done so by now...eventually it becomes this weird dream that you recall. I remember sitting there not understanding what they meant staring at their worried faces, until i went home and googled it.
I also experience that weird back pain and period pains more so since my miscarriages and this and like you say the pain leaves but no AF...then AF comes. I think it is your egg being released.
Some women i read on the forum had started by 3 months while still being monitored, but i wouldnt advise that as then they ended up panicking when they did fall pregnant under monitoring and its not easy to support them as then may have leftover molar cells, which thrive in pregnancy conditions.
Its very good news if you have had an aunt flo thats a good sign considering you had an op 10 weeks ago. I had my first AF the 2 months plus 1 week after my op, the week i got told i had a molar. Your doing well.
The level is high but not very high some stay in the hundreds for a good few months if it sticks then you may need some help. Even then the first resort is not full chemo but a jab of methotrextate which i believe is also given if you unfortunantly have an ectopic pregnancy, before they attempt surgery.
When i told a friend who lives abroad what had happened she told me her cousin went through the same thing and has no concieved 2 boys naturally. You will be fine dont worry about your age either just allow yourself the months to become all clear and i think your heading there daffodil even the ladies who ended up with Chemo and staying at Charring Cross posted years later with their good news stories of babies despite being older then us! Hope this helps you a little.

Defyingstars Sun 14-Jun-20 13:22:48

I’m so glad I found this thread! So sorry you are all in the same boat/have been in the same boat. I had MMC in April (my third miscarriage) and had a call last week to say it looked like a possible partial molar and now need to monitored.
I have had a negative pregnancy test, two periods and ovulated since the D&C which I am hoping is a good sign that my levels are back to zero but then I randomly started bleeding today, two days after my last period ended. Not such a good sign.

I’m sure you all feel the same but the indefinite ‘review period’ feel like another blow emotionally and our goal of having another child is moving further and further away...

Leaf87 Sun 14-Jun-20 19:32:11

@Nerdy123 thank you for all you information, I am sorry that was your 3rd. It was our first pregnacey so trying to tell myself that next time there is no reason why it shouldn't all go to plan!!

@Defyingstars Hi, yes I was so relieved to find this page i had my D&C 2nd april and was told about a month ago it was a partial mole. So far I have sent one sample to Charring cross. The next is due Wednesday so fingers crossed my hormones have dropped even more. The indefinite review period is hard I am trying not to think about if enjoy the sun and a G&T with no pressure! So far I have had one Af about 8ish weeks after my op. I think I may have ovulated for the first time this month had seriously bad pain mid cycle for like two days. Af due next week if she shows up on time 🤞🤞🤞

Defyingstars Sun 14-Jun-20 21:33:34

@Leaf87 good luck for Wednesday! Will be thinking of you

Nerdy123 Sun 14-Jun-20 22:11:17

@defyingstars i know how hard that feels when you get another blow after ones before and this time with a molar. Its good that you have had 2 aunt flo’s plus a negative pregnancy test for which your hgc level needs to be in the very low single digits and that is very promising. Even though you ended up bleeding after again some women rejoiced that as it meant their body recognised some things need to be cleaned out of the system so fingers crossed its your body flushing it out! but just keep an eye on it and hopefully your numbers will stay low and the bleeding is a one off. You will be fine and youl get there with the baby one day too!
We are in a rare boat but we can hold and help one another through.
Like @Leaf87 says enjoy the sunshine go about your day without this blocking you and goodluck Leaf for Wednesday too.
Charring Cross are really great and so are the ladies working there you are all in very secure safe and knowing hands.

Defyingstars Mon 15-Jun-20 09:04:48

@Nerdy123 thank you, that’s given me some reassurance. Going for first tests today to be sent to Charring Cross. Fingers crossed!

Leaf87 Mon 15-Jun-20 20:02:39

@Defyingstars good luck I wish you low hormone levels! My box should arrive tomrrow hopefully bloods etc due Wednesday. I have been drinking lots of fluid to see if it helps lower my levels in my urine 😂 you never know!!
@Nerdy123 yes thank you for all your advice!

Defyingstars Mon 15-Jun-20 21:59:52

@Leaf87 🤣 I like these tactics!

Nerdy123 Mon 15-Jun-20 22:45:56

@defyingstars goodluck! @Leaf87 fingers crossed! flowers

Leaf87 Tue 16-Jun-20 17:37:16

Annoyingly my box hasnt arrived today even tho my bloods are due tomorrow! Fingers crossed my box turns up tomorrow and I can get bloods taken Thursday.
@Nerdy123 did you find that sometimes there was a little delay with your boxes or did they arrive every time like clock work?
@Defyingstars have you had your first results back yet 🤞🤞

Nerdy123 Tue 16-Jun-20 19:00:41

Hi @Leaf87 they mostly came like clockwork to be honest once i was going to be out of my local town and in a situation where i would not be able to do the early morning urine test and post it that very day. So i called up and they have it on the box too that you can post it back to them within 2 days but no later. But this was when i had a month or two of monitoring left so i was a little more relaxed. So im hoping you should be ok but that is frustrating.

Defyingstars Tue 16-Jun-20 19:53:23

It took over a week for my first box to arrive - they said there have been some delays with the post. Annoying because just a few days late means you can lose a month of TTC if you miss your ovulation window! I hope yours comes tomorrow @Leaf87

I have to call Charring Cross on Thursday. I’ll let you know how it goes!

Defyingstars Tue 16-Jun-20 21:16:16

@stillhangingon did you speak to the hospital? I just wanted to say that we sound quite similar (potential partial molar, regular periods & negative preg tests and then random bleeding). Since I was at the hospital yesterday for my molar blood test I told them about the random bleeding and they can kindly did a scan. They couldn’t see anything that looked odd so the doctor said it’s most likely just hormones settling. I’ll let you know my molar blood test results as if negative (hopefully!) then we know the random bleeding is nothing related. I hope that helps

I really hope you’re now getting the support you should be getting from the hospital and your mind is at ease xx

Leaf87 Thu 18-Jun-20 21:11:00

@Defyingstars have you had your test results back? My box has still not arrived I called to check and they advised it was probably delayed in the post! Gives me slightly longer to try and get these pesky hormones down!!
Good news is Af has shown up right on time 🥳🥳 I have never been so happy surely that's a good sign!
Hope your all ok

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