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.

Hi
Is anyone still on this forum? I've just been diagnosed as having a CMP and had a SMM op yesterday. My levels started at nearly a million so am expecting it to take a long time for them to drop 😞
Been reading some of the stories on here and am so sorry for everyone going through this. Xx

Hi Hjp and anyone else still here, I've used this board lots since my MMC but now things have stepped up somewhat and I don't know where to turn.

A quick (not) introduction.....

I had a MMC five weeks ago today. I was 10+3 baby measured 10+. I had an ERPC the next day. I continued to bleed for three weeks and continued to get postive HPT's, I also needed a week of antibiotics for a suspected infection. After a few calls to the EPU I was asked to come back in for a scan. I was found to have retained products and told only option was to have another ERPC with a camera, to be carried out by a Consultant. This was done two weeks ago and was physically much harder than the first one.

I was discharged on the same day bleeding heavily and passing grey/white bits (awful). I've bleeding heavily since this, had cramps and passed more tissue. I spoke to my GP who got hold of the Consultant and called me back in last week. I had another scan, inconclusive, womb full of blood and another course of antibiotics. I've also been told I've got fiberiods (small internal and external) plus a cyst on my left ovary. I had my follow scan and appointment yesterday. There is a now a mass in my womb although my Hcg has fallen from 64 to 30 in a week. The Consultant has told me the pregnancy has now been confirmed as a Partial Mole and I've been transfered to Charring Cross for follow up and treatment. I have another appointment next week locally to assess my need for a third ERPC with ultrasound to clear my womb if it doenst happen naturally this week.

I'm just so worried, this was my first and much longed for pregnancy, I'm 40 next month. When I thought I just needed to recover from the first surgery then I could try again I was coping although still heartbroken for the baby I'd lost.

Now I'm just terrified. I'm confused as to why it's taken so long to work out what was going on, I've had nothing but apologies from all the doctors about the delays and I've been offered details for PALS to raise a complaint (not some thing I want to do). I'm frightened about future treatment and so worried that at my age any delay in being able to try again is massively reducing my chances of becoming a mum.

My husband has come to my appointments but is adamant I should not be upset about any of this as the Consultant said I'd be fine after treatment. He's not offered much support after our miscarrige past the first week. He's been very angry with me being so upset firstly about the loss of the baby and latterly about all the ongoing physical problems I've had. He's not very forthcoming with shows of emotions usually but this has really broken me. Whilst waiting for my diagnosis yesterday he booked an overtime trip with work and left for a four day trip to LA at 05.30 this morning.

I don't know what I'm really asking, but if anyone in a similar position or anyone who has been through this wants to compare notes that'd be great, I don't have any girl friends who've had a MMC let alone anyone who even seems to know what a PMP is. I just feel very, very alone.

Hello Monkey and all
I'm new - partial mole diagnosis today after mmc and erpc a month ago. Very sorry to hear of all your losses and of Monkey's lack of support. I hope we can all help a bit.

I'll get the referral to Charing Cross next week. Is it worth taking a pregnancy test in the meantime, and if so is there a kind that tells you more than others about levels? I've had pretty much no bleeding since erpc which I'm not sure whether is a good thing or not...

Hi stealth, I'm really sorry to hear of your loss and the mole diagnosis today too. It just seems like one thing after another doesn't it.

Everyone else seems to be a bit quiet on this thread currently and although I'm sorry any of us have found ourselves here I'm glad to here from you.

I'm about a week ahead of you, five weeks since my MMC and first ERPC. I had my second ERPC as they just thought I'd got retained products, it was only because I went to see my GP with bleeding (I was told I'd have none both times, so don't worry) after this I got pushed for follow up back at the hospital. I asked her about the posibilty of a partial molar because of the bleeding and the fact that I was still getting postive pregnancy tests. The normal pee on a stick test will tell you there is hcg present, but won't give you a 'number' and you'd not be able to compare accurately enough to tell if your levels are reducing. Charring Cross will look at bloods and urine to monitor you. I had a blood test on Friday at the GP's and it was 64, I had another yesterday and my levels had dropped to 30 so going down but the hystology results combined with something concerning/increasing on my scans has made the consultant refer me. I don't understand my low levels as thought if the mole was growing they'd shoot back up.

I called Charring Cross today as just wanted to know what to expect, the lady I spoke with was fab, she'd already got my contact info but no notes or anything else from the hospital , she explained they'd request my slides and review to confirm the diagnosis but had my testing pack ready to send to me. Here is a link to their contact info, the rest of the site is good too:

www.molarpregnancy.co.uk/contacts.html let me know how you get on, I'll keep you posted but I think I've had enough google time for today, my head is going to explode.

Thank you! Just bought poas weeks test so I'll try it in the morning. The price of those things is crazy! I know is not very accurate but on the off chance it's low it would be good news

So I took the test this morning and it said not pregnant! Given it had a sensitivity of

That sounds like really good news stealth, deffinately below 25, from what I've read it's very rare to be so high it'd not show and you'd be feeling really poorly too if that was the case.

Impatience got the better of me this morning and I did a first response test I had left over, pale line still for me but I think they detect down to 12ish so as long as I'm below 30 on thursday I'm heading in the right direction. Weirdly I've stopped bleeding today, I'm glad of the break but given I was warned I'd bleed and pass tissue this week after the consultant saw my scan I'm now worried things aren't moving at all. This is certainly the worst sort of touture, currently feel like I'm loosing my mind.

How did the tests go, Monkey? I sent my first ones off yesterday- fingers crossed. I also had some bleeding last week that I think was af, so feeling positive

Hi everyone sorry I went a bit quiet on here it's all been a bit of a crazy horrible emotional time for me. Unfortunately I have found myself ended up in a bed at Charing Cross hospital having chemo. A very scary and lonely time. I have to stay here for 6 nights. The staff are all lovely but this feels like a nightmare!
Glad all of your results seem to be coming down that's great news.😄 Mine are still 25000 (they started at nearly a million) so still a long way to go to get to

Hello Hj very sorry to hear that. How long have you been there so far? Have you got people coming to visit?

Hi stealth
Good to hear from someone!
I've only been here 1 night. My husband and 2 children have been in today which was nice but it's so hard when they leave. 😢 We live 2 hours away so it's a long way for them to come and then get home again. They are going to try and come again tomorrow but then they will be at school/preschool from Monday... I know it's only a few days but it feels like forever. I'm on a ward with other cancer patients that have been here for over a month so I guess I should count myself lucky!

Well I hope they made it today- and if not then that you can call or Skype them ( assuming the WiFis ok - where I had my erpc it was faster than ours at home!).
Do you know how long it takes charing cross to test samples you send in? I sent my first last week and am hoping I can call and get them tomorrow

The wifi is useless and they don't have TVs here! 😱
If it's your first result it will take a few days, what day did u have it done last week? If it's not your first result it should definitely be ready..

Hi Stealth and Hjp........it'd gone a bit quiet on here so I've only just seen your messages.

Hjp sorry to hear you've ended up at CX, I hope they are looking after you. How is the treatment? Rubbish wifi and no tv sounds like time will drag, can I post you a book or something? (Seriously, PM me if you'd like!) I'd be going mad! Can DH bring you a tablet with a few films on to watch?

stealth must be good news on your levels if you've had AF. It took about three days for my first results to come back and I've got my second tomorrow. The lady at CX was lovely on the phone again and I had yet more questions for her......

I've been getting tests and scans at the hospital too so I know my Hcg is reducing, I've had 64, 30, 22 and 10 so far so that's encouraging. Scans are not so good as I've still got retained product after two sodding ERPC'S. Consultant has said he hopes this will come away if/when I get a period, I'm to wait for this then contact him for another scan. He's happy that CX continue to monitor my levels now too. Pretty sure I've ov'd recently as had pains, positive OPK and delightful spots so should know in a couple of weeks.

To add to my general crap feeling my hair is falling out in great handfulls. Doc thinks it's just "one of those things", I blocked the hoover twice this week plus the shower. Very shallow I know but I'm finding this hard on top of everything else, usually have long thick fair hair, am going to have it cut into a short bob as all I've got left are fluffy rats tails! Bleugh.

I'm moulting more than the cat!

Hello all
I got my test results- levels are back to normal! They haven't looked at my samples yet but assuming that's OK and the next test I hope I'll get signed off in a month.

How are you getting on Hj? Not long to go!
Sorry to hear about your hair and feeling crap Monkey. Mine often seems to fall out in autumn anyway for some reason

Excellent news on your levels stealth, I'm down to Hcg of 7 as of Tuesday so going good in the fight direction too. I've been told CX have my slides and will have looked at them byou Friday of next week. Also waiting to see if I get a period next week and if this shifts the last of the retained stuff that won't budge. Consultant wants me back for another scan after this to check. 8 week post MMC so far and it seems like someone has stolen the last two months, last time I felt normal it was hot and sunny.

HJP How has your week been? really home you are home and all has gone well for you.

Hi guys,

Does anyone actually post on here anymore? I went into hospital on the 11/09 for a D&E operation after excessive bleeding for a few weeks, i was told then it was to remove missed products from a miscarriage. A few weeks later i got a surprise phonecall from the hospital to explain i had a suspected molar pregnancy. It was all a bit of a blur on the phone to be honest, i just zoned out after hearing certain words.

Anyway it was confirmed as a complete molar pregnancy and my first set of blood results were normal. I bled for 2 weeks after the operation, stopped for a week and then bled again for 5 days. ( i thought this was my period)

On Wednesday last week i started to bleed again, not too heavy but seemed period like. Im panicking, i had sex earlier that evening and now im wondering if theres an issue.

I even went to hospital and was basically told i was stressing out. There was no blood clots or abdominal pain but now im bleeding when i wipe and have some throbbing pain.

What is going on with my body?! Ive been a nervous wreck since finding out.

hello Melissa
Sorry for your loss, and that you're feeling awful - are you feeling any better? Can you ring Charing Cross or wherever you've been referred for advice? I've just had the all clear this week, and hope you aren't far off, given your normal results

Hello I'm new here, my story... I had a medical termination at 5 weeks 17th December 2016 I passed the whole pregnancy in hospital10 weeks later here I am! I had a really bad bleed Wednesday it was like water running down my legs so I was scanned they found a big mass in my womb..I had what Drs believe was a partial molar pregnancy removed yesterday. what I'm really confused about is when they scanned me Wednesday when they found the mass in my womb my hcg hormones were 5 witch indicates a negative results so how did I end up with a partial molar pregnancy with no hormones?.. Please can some one shed some light I'm going out of my mind could they have made the wrong diagnosis? What else could it have been please HELP... Thank you ☺️

Hi I know this post was quite some time ago, but thought it was worth a shot.
I recently found out I was pregnant, after coming off the depo injection for 12 years. My last period was the 1st October (this was my first period since the injection and really was only spotting). My partner and I were so excited! Anyways last week I was unwell and collapsed. Now I have low bp so pressured it was this and that I had morning sickness, so maybe low blood sugar. I workin a hospital and I had a pain in the left side of my abdomin, so got the dr to check me over. Long story short, I was sent for a scan and nothing showed (at this stage I thought I was 6 weeks) my hcg levels were 6700. They brought me back 48 hours later, still nothing on scan and hcg levels were 9000. They decided I was having an ectopic pregnancy and sent me for surgery. An hour later after being cut open, I woke up to the news that it wasn't ectopic, and my uterus looked pregnant. This was last Thursday. They re arranged a scan for Monday. On Monday I had my scan, and it still showed nothing. My hcg levels were 29000 (which were a normal progression). Due to still not seeing anything on the scan I'm booked in for a d and c today, and they have said they feel it might be a molar pregnancy.
I'm so scared as I have had no symptoms, no severe pain, no bleeding at all. And they said mycervix is tilted so it's difficult to scan. A tiny part of me feels what if they just can't see it yet? My dates are not definate, and like I say I've had no bleeding. I'm trying to be realistic, but a tiny part of me is worried I might terminate a baby they just can't see???
Sorry for the essay
Anyone been in a similar situation? My consultant wasn't too sure her self and asked for some advice xx

I got diagnosed with molar pregnancy on 12 th week scan...i still remember when the scan was going on, i was trying to search for my baby but instead found out the it was a complete molar pregnancy. It was very difficult to sink in the reality.my heart kept telling me it was a bad dream but my brain knew that it was the end of something beautiful. It was followed by a Surgery today...I was browsing about this condition and found this page...it really helps to read that even after such contains i can still hope for positivity in later pregnancies.
I read a lot about conditions and know how it happens but i could really find the real reason as to why the egg miss the gene ??? Does anyone know or have a clue.

@Pnandal481 I had a similar experience to you, I found out I had a complete molar pregnancy at the 12 week scan. Unfortunately I had to start chemotherapy as my hcg levels didn’t go down, which I’m still going through. From what I’ve read, there really is no reason for the empty egg, it’s just something that happens sometimes and would not usually implant into the womb lining. It’s a bit more common in younger women in their teens, or over 45s. I wish you well in your recovery and future pregnancies.

Hi @MargoGru, Thanks and I wish you all the very best with the chemo. Hope everything goes well and wish you a fast recovery.
I have read a lot of stories here which breaks my heart that so many of us are facing this, not just once but multiple times. It would affect our health and our minds.All this made me think could this kind of pregnancy be caused due to life styles( What we eat, when we sleep, etc). I have been googling things and know that the eggs take 40 days to mature and come out of the ovaries. so for it to be a healthy egg one will have to start eating healthy food at least 2 months before. After the D and C, the doctors did not tell me any particular food diet I should follow but my parents had very specific diets for a week, that people of that time used to follow(Not sure if it would help me but I would like to cling to anything that could make this nightmare disappear). Google give a list of food that we can have to make the eggs healthy. Now I would like to ask my friends what different did you do with your next pregnancy to be successful?It would be great help to everyone if we could have some useful tips.

Does anyone know when you’re periods start again after a Molar pregnancy? Had a D&C Dec ‘19 bled on and off for about 2 weeks, then nothing, it’s been 6 weeks. I didn’t know if anyone could let me know what happened for them?