Partial molar and molar pregnancy support thread - all welcome!

[MrsJohnDeere]

I thought I would start this thread as a place where anyone who is going this or has gone through this in the past could share experiences, vent about life, etc.

After a MMC at 12 weeks and an ERPC a few weeks ago I've just found out the cause was a partial mole. I've been referred to Charing Cross and am waiting to hear back from them to start the monitoring etc.

I know the chances of cancer developing are about 1/100 but I'm still struggling with the 'OMG I'm going to die' feeling at the moment, plus the grief and stress of the miscarriage itself.

I haven't told anyone in RL, other than dh, even friends who know about the miscarriage. I'm worried abut how they'll react and that I'll end up blubbing.

Huge congratulations on the birth of your dd. Hope you're enjoying lots of cuddles.

Bet it's a bit nerve-wracking going through testing again.

I'm good thank you. Counting the days until scans and my (hopefully) final appointment. Still another 6 weeks to go.
Mouth ulcers nearly gone. Lots of molar bleeding/discharge again. Don't know if that's good or bad. CXH not overly helpful when I asked.

Hi all, I discovered on 8th April that I had suffered a molar pregnancy with my first pregnancy and from that day on I just feel it has been bad news at every turn. I came across this site and just need to vent and find a bit of support from others who have been through the same.

I had to have a second d&c as I haemorraged badly and completely unexpectedly two weeks after the first. I then was admitted to hospital three days after the second op because of more heavy bleeding. I'm feeling low because of having to cope with the disappointment of the mc and the ongoing worry about the mp. I feel like a nervous wreck because the haemorrging really freaked me out and I'm terrified it will happen again, I'm scared to be alone in the house. I am now on tranexamic acid tabs and another one begining with 'm' which are supposed to control the bleeding. Has anyone got any experience with these? They seem to be working at the moment as bleeding is light although bleeding was light after the first d&c and then it all went pear shaped! I'm not even allowing myself to think about what else could go wrong further down the line, just trying to get through each day at the moment. We've got a cruise booked for the last week in May which I can't see myself being confident enough to go on and my sick note for work runs out this week but I'm dreading going back and something happening... sorry to vent but it's good to read accounts from others who have been through it.
I'm trying not to get paranoid about anything, just wondering how other people coped in the early days? I wanted a baby so much but this whole thing has freaked me out so much that right now, I'm questioning whether I can go through with it all again, not just the risk of another mc but just the whole gynae thing- just really want to get back to normal! x

Sorry to hear you are going through this, and i am not surprised you are freaked out it sounds very scary.unfortunately I have no experience of this. I hope things start to get better for you soon. I also hope you get a response from someone who had been through it soon too

The reason I read this post is that I am currently going through a missed miscarriage/suspected partial molar pregnancy which was discovered on 3rd May. I have my ERPC booked for Thursday this week. I am finding it very scary and confusing as one minute I am told its not a pmp as my hcg levels are 3000 and a pmp would be in the hundreds of thousands but then the consultant says it looks likely due to abnormal placenta and elevated hcg levels as 3000 is high for where I am at the moment. I was wondering how long the results take to come back from charging cross too is it around 6 weeks? I will ask on Thursday but was just wondering on the meantime x

I'm sorry you have found yourselves on this thread - miscarriages are bad enough without finding out that it's molar - and all the worry that comes with that.

Biscuity: don't hesitate in going back to your GP & being signed off again. I had 6 weeks off after my complete molar pregnancy. I was literally having nightmares & not sleeping. I don't think I could have coped at work.

Noah'smummy: my HCG was 46,000 at about 7 weeks pregnant, when it was suspected it was a molar pregnancy. It took me nearly 6 weeks to get the diagnosis confirmed by Dundee. They like to start monitoring at 4 weeks from diagnosis, so it was a frustrating time.

I imagine things are more efficient at Charing X.

Thinking of you both over the next wee while.

Hello Biscuity and Noah'sMummy - sorry you find yourself here.

Biscuity - I'm not at all surprised you are freaking out, totally understandable. I second the idea of going back to your GP and getting another sick note.

NoahsMummy - it was 5-6 weeks from ERPC to getting results back from CXH in my case, then another couple of weeks to get my first testing kit, then another week to get the first blood results back. It feels like an eternity! I had (have?) a partial molar pregnancy but don't know what my hCG was at the time of the ERPC (it wasn't suspected then, only discovered when the products of conception were analysed at the lab). I was told that, broadly speaking, hCG levels are much high with full moles than partial moles. My first bloods were at 9 weeks post ERPC and came back at 80something.

Please feel free to ask any questions if you think I can help (for ref I've just finished chemo - hopefully - with a partial mole, my ERC was back in Oct).

Thanks everyone for your support.
Noah's Mummy-best wishes for the ERPC on Thursday. The whole confusion thing from the medics is very common I have found. Every time I go back to hospital I see different people and get blank looks when I explain I've had a molar pregnancy. I wasn't told whether it was partial or complete but will ask the consultant when I see her next week. My hcg was 400 000 on the day of my ERPC and after second one was 3000 which is my most recent result. I am under the care of Sheffield and so far although it is very early days I have found them really efficient. They sent the first sample bottle through 3 weeks after the first ERPC. I wish that I could be tested weekly though rather than have to keep waiting. If my hcg levels had been tested weekly after the first ERPC, the fact it wasn't going down would have been noticed and I could have avoided the haemorrhaging. I'm seeing the GP on Thursday and will ask about this.
Has anyone got any experience of being on tranexamic acid and mefl.. something? I'm now 12 days past my second ERPC and bleeding (browny/pink) is light but is not lessening yet. Does this sound ok?

MrsJohnDeere- glad your treatment is hopefully over. How has it been? I was managing to keep positive about hopefully not needing this as it is still early days for me but my friend came over yesterday and I mentioned it to her which was the first time I had actually said it out loud and she looked horrified which ended up scaring me.

All the best to everyone going through this horrible thing...

Sorry to hear that there are some new members to this thread - I hope that you find support from it and feel less isolated and frustrated kowing that other have been through this and made it to the other side :)

Mrs JD can I ask how you know that your bleeding is molar related and not your period?

biscuity - the sheffield team are lovely. I only got a diagnosis 3 months or so after my first erpc (hospital (in UK) on hols didn't think that they would share that gem with my hospital or Drs so I kept on going back to the Drs with heavy bleeding and being fobbed off) - then 2nd erpc - and 2 wks after that levels still significantly high (certainly '000s, might have been 20 but I can't remember now).

Nurses were particularly lovely in Sheffield. Consultant was eccentric but also nice.

Biscuity13 - I was on the tranexamic acid on and off for continued heavy bleeding and mefenanic acid for lower back and abdo pain. I bled daily for 15.5 wks after ERCP and eventually haemorraghed at Charing Cross during treatment and had to have an embolisation procedure - fine now and glad the ordeal is over! I dont think you should be on tranexamic acid long term - I only was put on them for 5-7 days at a time. Have you been told if you are to reduce them or stop them? Hopefully it will stop soon as many women can bleed for many weeks post ERCP - chat to your Doc about it and the meds and see what they say.....

Keep us posted on how you get on :)

Nattnothing - it doesn't look like a period at all. It is strings of slime with blood in it or lumps of tissue or tiny blood clots.

I wonder if a period is on its way though - first in over a year! - as I've got horrible spots and random pains (ovulation pains). Reckon I'll have a period 2 weeks today.

MrsJohnDeere- I have just been back and read your story. Fingers crossed it is all coming to an end now for you.

Nattnothing- I am on the tranexamic and mefenanic three times a day and have been for 9 days now. They gave me a huge box of each after I left hospital a week ago today and said to continue with them until the box is empty! I thought this was a bit strange but trusted they knew best. I will mention it to GP on Thursday but am not confident they will have any answers. Being on the tablets reassures me that I hopefully won't haemorrhage again but I am concerned about being on them for so long and wonder if it could mask symptoms?

Mistlethrush- thanks for your comments about Sheffield- just hope I never get to meet them! 3 days after second erpc my hcg was 3000 but haven't had a newer result since then, won't until the end of next week which worries me...

Mrs JD - that's awful but hopefully your period will be here soon and your body can get back into a regular cycle.... Mine has taken a bit to settle 20 day cycle, 22 day cycle and now 28 day cycle. Its just so hard to know what to expect, I had x2 periods during chemo (not sure if they were true periods - bleeding with little or no clots that lasted 3-4 days).

Biscuity13 - defo get your GP advice as my local hospital were totally useless - nice but pretty clueless and its so frustrating!! I agree that you dont want the meds masking an underlying issue as I had a uterine AVM that was being masked and obviously needed treatment/procedure to stop the bleeding.

Thank you for your messages! I am so pleased I have found this board and people who have been through/going through this too. I am sure I will be asking lots of questions especially when I have the diagnosis. I have a feeling that it will be confirmed as partial molar, I have no idea why I just do. I am quite trusting of my feelings at the moment as I had a feeling all throughout the wait for the scan something was not right. Fingers crossed this time my feelings are off though!

Thinking of you biscuity13 and I hope you are doing ok today

x

Hi all, how is everyone doing?
I'm feeling down again today as 2 weeks after my second D&C it looked like the bleeding was coming to an end and then it got much heavier again yesterday, not enough to seek help but enough to start the worrying and panicking all over again. I've been to the GP today and been signed off for another 2 weeks so that takes the pressure off a bit more. She said bleeding can fluctuate which is what the nurse told me from Sheffield when she phoned the other day. I'm also feeling emotional again today about the loss of the pregnancy, seems like every time I turn on the TV, there are happy couples with babies. I yearn for that but at the same time am scared to even contemplate trying again once I am able. No point to this post really, just wanted to vent! Hope everyone is doing ok today.

NoahsMummy- have you had your diagnosis yet?

biscuity - its as if every pregnant woman or parents with small children come out and stalk you when you feel like that - I know the feeling well. Hope all OK with you and its not bad news - when are you due a test or results?

Thanks mistlethrush- Sheffield have asked me to do a blood test tomorrow with the GP and they'll have a look at that and the urine sample I am due to do in a couple of days. Got an appointment with my gynae consultant next Thursday and will have another blood test done then. I'll feel happier once I start seeing the results come back- it seems to take forever waiting and not knowing.

I had my ERPC today and it went well with no complications. They said I should get my results back in around 2 weeks but after reading your posts I don't think I will hold my breath. Was surprised when they said if it wasn't a molar I wouldn't be notified! I thought they would as they suspected it to be one and told me so!

The waiting sounds so frustrating Biscuity and I can understand why you need to see the results come in. Sorry to hear you are feeling very emotional and totally understand why x

Great news about you finishing the chemo mrsjohndeere!-so happy for you. To the other ladies on the thread-please feel free to pm me. I had my mole and chemo 13 years ago but would be happy to try and answer questions/give support. All the best.

NoahsMummy- glad the ERPC went well and fingers crossed everything continues to go well.

Hi. I have recently been diagnosed with a PM pregnancy, and have followed a different path- as I live in Greece.
Instead of waiting for hCG levels to plateau, they treat you with Chemo -Methotrexate- immediately.
I had 3 lots over 3 weeks starting 19th April; the day after my D&C to remove the overgrown placenta (but no baby) discovered that afternoon at my first private scan at 7 1/2 weeks.
Everything has almost passed me by, as normal life continued around me, husband, toddler, business to run. etc...
To start with, I was almost relieved to hear that the pregnancy was not normal- as I had been suffering with such accute nausea prior to diagnoses. But since then, I have felt worse and worse.
I have been working more or less throughout the process (apart from the day in hospital for chemo & day after) and I am beginning to lose the will to make any more effort.
My hCG is still not under 50. Even though I had the chemo. It has 'stabilised' at 160+ for a week, and I have just had another D&C on 21st May.
I'm not sure what I need/want from posting this- but am feeling more & more panicky by the day.
I have great support from my husband & friends- but for some reason I still feel alone.
I shall have a private blood test for my hCG on Monday, as I can't wait for the hospital appointment on Thursday. I so hope it will go down.....

I had 9 'courses' of chemo - this was one injection every other day, four injections in total - before I was clear. I found the chemo wiped me out physically - it made me very tired - other people have different side effects or none at all.

That's what worries me- I think they will tell me next week that I have to have more chemo. Which means being hooked up to a drip for 4 hours. And feeling rubbish for a couple of days. I just wish I could get down to zero & start to move on....

Also, my last 'period' was in Feb, and I have no really had any bleeding since.... minor after both D&Cs.... it seems like everyone else experiences lots more bleeding- although I'm not complaining.... should I expect it at some point?