Partial molar and molar pregnancy support thread - all welcome!

(505 Posts)
MrsJohnDeere Wed 28-Nov-12 11:06:13

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.

Psmith83 Fri 28-Mar-14 19:09:57

Cheers bakingtins! I've found you all here.
Purplefrogshoes, that's fantastic. How're you feeling?
After quite a few muddles and the local hospital losing my bloods, blowing me off when I came to re do them on my lunch hour after receiving the magical box they can't stop telling me about, forgetting to fax my stuff to charring x and misinforming me it was a partial molar (charring x informed me it was complete when I rang them) I'm on the rocky road to my first samples. Woop woop. shock Still very surreal. (At least I've had a bfn poas test. And a period at 5 weeks after D&C. Low threshold for joy right now) grin

Purplefrogshoes Fri 28-Mar-14 23:25:11

Hi psmith I'm really good smile that's is fab you are bfn! I also had a complete mole and it took me ages to get below 25! My hospital had things so muddled in the beginning that it was nearly 9 weeks after erpc before I found out it had been a mp. How are you feeling?

Psmith83 Sat 29-Mar-14 07:32:36

I'm soo pleased for you, purplefrogshoes! Congratulations!

The frustration is wearing off. Trying to do stuff I couldn't do if I were pg- tattoos, wine and stinky cheese. Hoping bfn means quick follow up, so feeling optimistic.

Purplefrogshoes Sat 29-Mar-14 10:54:47

fx for quick follow up psmith at the start i thought 6 months seemed like an eternity but it has gone really quickly

Amylouise101 Sun 06-Apr-14 23:10:18

Hi all thank you all for sharing your experiences it has really helped me . 3 weeks ago I went for my 12 week scan to be told that the baby had stopped growing at 8 weeks hubby and I were devastated we kind of just thought that because we have a little boy that's 20 months old that this pregnancy would be fine like the last one but we were defo wrong . After having the scan we were told it was possible a molar pregnany so we decided a d and c was the best option. I had that 3 days later I have now been told that it looks like we lost twins and that it was a complete molar sad I am now waiting for chx to get in touch . When the doctor called to tell us it was a molar she said to take a pregnancy test to see if my hormone level are still high I took two both positive . I have been offered another scan so I am going to call tomoz to arrange tbh I'm all over the place scared anxious upset and overwhelmed I just feel like it's never ending sad x

Psmith83 Mon 07-Apr-14 10:09:55

Hi Amy,
I'm so sorry for what you're going through. I had a d and c for a complete molar pregnancy in February. It's surreal and terrifying. I didn't have a negative pregnancy test till about five weeks after- I believe that is normal, even for "normal" mc. Charring x have been really helpful so far, although it took ages for them to get in touch.

Kellster76 Mon 07-Apr-14 21:57:06

Hi. Never done this before so bear with me. I went for my 12 weeks scan in Jan 2013 and was told that the baby had died a few days earlier. Two weeks later I was told I'd had a molar pregnancy and was referred tomCharring Cross. Luckily I was given the all clear in October last year and didn't need any treatment. However I became pregnant again in January this year and at my scan at 7 weeks was told that once again there was no heartbeat. It's been 2 weeks since I started bleeding and I would really love to know if anyone has had a similar situation and gone on to have a healthy pregnancy

Purplefrogshoes Mon 07-Apr-14 22:52:41

Hi amy I'm so sorry, it's real shock, my levels took ages to go down so was still getting BFP for months, it's a long hard road but I have finally been given the all clear I found posting here really helped

Hi Kellster I'm so very sorry, i think there are posters on this thread who have had healthy pregnancies after MP

psmith hope you are doing ok

Psmith83 Sun 13-Apr-14 09:13:25

Good news! Called charring x got my results- negative! Woop woop! So I'm in the short follow up category! grin

Purplefrogshoes Sun 13-Apr-14 23:15:17

Fab news psmith grin

Psmith83 Tue 15-Apr-14 08:27:37

Thanks Purplefrongshoes! Am itching to try again. have had two normal periods since my complete molar and looked at several studies that show that once zero is reached, the odds of recurrence are pretty much nil..... I know that stat about 20% needing chemo, but I don't know how many women have their levels rise after they reach negative. Can anyone point me to some cold hard facts either way?

hw1402 Wed 16-Apr-14 09:36:13

Hi All,

Sorry for all the information but thought it best to give my background. I went for an early scan on 17th February as I had 2 previous miscarriages and was told I had miscarried again, I had a D&C on 19th February and 4 weeks later I was starting to feel pregnancy symptoms again so I tested and it showed I was pregnant however, the hospital contacted me 2 days later to advise that my tissue had been tested and came back with PMP, they started testing my HCG levels to see if this was a new pregnancy or left over tissue and they were still in the thousands so I got a scan which confirmed it was leftover tissue and had to have a 2nd D&C.

I have started the weekly testing and my hormones are now still sitting at 490, can anyone please advise how long it took for their HCG levels to drop completely and how long it was until they were able to start TTC again, did anyone start TTC before their levels were totally down.

I am now 37 and feel like time is running out for us and this process is never ending and just want to TTC again but at the same time I am so upset by this process, I start crying at work as nobody seems to understand that I am still going through this, they just assume because you MC in February you are normal again. Also having had 2 miscarriages before I am used to my body being back to normal within 4-5 weeks and this seems like it will never end.

Would really like to hear other people�s stores and future success stories.

Purplefrogshoes Wed 16-Apr-14 23:53:22

I looked for that info when I was freaking out a few months ago psmith but couldn't really find anything, the person I spoke to at the treatment centre said it would be very unusual.

I'm so sorry hw I had cmp and it took about 13 weeks for my levels to drop. I am 37 and I have had two other mc as well as the mp, it did feel never ending and nobody irl understood but I have just been given the all clear to TTC

hw1402 Thu 17-Apr-14 16:54:00

Thanks for your reply purplefrogshoes.

Do you still have to have any further follow up or do they just stop testing once you have reached negative?

Purplefrogshoes Thu 17-Apr-14 21:57:28

I had 6 months of testing after I reached negative, I had to send a sample once a month, it felt like an eternity in the beginning but the time has passed really quickly and I think the break from TTC and mc did me good.

hels29 Mon 21-Apr-14 19:38:06

Hello,

I feel like a phoney to be on here since I have no children but this still seems like the right place to be! - I had an erpc at 9 weeks for a cmp. Three weeks later and I'm bleeding more heavily than I have so far. Slight bloating but not really in pain. I'm assuming this is a bad sign - but there is seems to be little information out there ... If anyone has a better idea, it'd be great to hear from you.

And Happy Easter ...

lotsofcheese Mon 21-Apr-14 20:01:37

Just wanted to say hello & offer support to those of you going through the experience of a molar pregnancy.

Mine was nearly 3 years ago, when I was nearly 40, with a then 3 year old. I had a CMP, diagnosed after ERCP at 7 weeks. The diagnosis took a month to be confirmed; although EPU staff clearly had suspicions from the scan. I was lucky that my levels were almost zero from 1st urine sample, a month after the ERCP - and stayed that way. Because of my age, we started trying 5 months into monitoring & I became pregnant a few months later.

I was advised to have a scan at 8 weeks in subsequent pregnancies. Despite a good heartbeat at this stage, I sadly had a MMC, which was devastating as I was 40 by then. So I needed another ERCP.

Much to my surprise, I was pregnant within 2 months, despite my cycles being irregular after the MMC. Everything was find that time & I now have my beautiful DD.

I just wanted to share a positive outcome with you, and wish you all the best for future pregnancies.

Purplefrogshoes Mon 21-Apr-14 22:38:55

Hi hels I had erpc and cmp and I had loads of bleeding for months and pain afterwards! it wasn't a bad thing for me after a few months my hcg for 0. Have you had any testing yet?

Hi lotsofcheese thanks for sharing, I've just been given all clear to TTC and I'm a bit anxious, congratulations on your DD

okiepokiepinkypokie Mon 21-Apr-14 22:54:00

hi all.i would like to join this thread if that's ok? I've had 8misscarriages the last of which was a partial mole which was missed on four scans (which i had at 6, 7, 10 and 12 weeks due to six weeks continued black/brown bleeding with big bleeds inbetween) i delivered my little boy (he died at 12 weeks) on the 04/04/14 and it wasn't until i was contracting intensly and hemmoraging during "labour" passing large clumps of what looked like sea sponge that a molar was supsected. histology confirmed a partial mole a week later. two days after erpc (performed after delievering baby to remove tissue and stop the bleeding) the bleeding completely stopped for a week then i had a huge bleed and was dmitted to hospital for iv antibbiotics for an infection in my uterus. the bleeding stoppd again i now have random bleeds of just brown blood (the same as when i was pregnant) and have all off the same symtpoms too, nothing has chaged really. i sleep all the time as im exhausted , I'm anemic from the blood loss but on iron so doubt it's that he tiredness. I'm still getting really strong bfp's on home pregnancy tests too. I've been refrred to Sheffield for follow up but haven't heard from them yet, i was just wondering how long after the referral was made did u recieve your first letter/phone call from the hospital?? and also how long till you got bfn on a hpt? thAnkyou in advance for any advice, i am so glad to have found this forum and look forward to sharing and supporting each otther in the long road ahead. xxx

Purplefrogshoes Mon 21-Apr-14 23:27:36

pinkie I'm so very sorry
I had cmp and I bled for ages after erpc it was exhausting! I tested positive for months, once I had finally been referred the treatment centre were very quick and very helpful

hels29 Tue 22-Apr-14 10:30:41

Thanks very much purplefrogshoes. Bleeding more heavily and have been told by charing cross to stay at home for a few hours and see if it lessens. I had my first blood test this morning. So results in a couple of days I guess.

Pinkie - that sounds like a horrid ordeal. Charing Cross were very quick to send me the package of stuff - within a week of referral, if that's anything to go by. It must be worth contacting them for advice?

hels29 Tue 22-Apr-14 11:24:59

Contacting Sheffield that is ...

okiepokiepinkypokie Tue 22-Apr-14 19:59:36

hi hels and pfs thankyou for your replys, i appreciate you sharing your experiences. i think i will ring Sheffield tomorrow and ask them if they've recieved my referral yet if not I'll chase it up with the referring hospital and see what's going on. my local hospital is rubbish and diagnosed possible turners syndrome when the baby was found to have omphalocele and a cystic hygroma at ten and a half weeks and told me my baby had "abnormalities" but didn't notice the molar tissue (there was LOTS) on any of the scans an even though i had ALL of the symptoms of pmp nobody ever checked my hcg levels or suspected or investigated molar . a doctor told me last week i should never have been allowed to have medically managed miscarriage(tablets and pessaries to induce contractions) as the molar tissue is highly vascularised and that's why i bled so badly so i don't have any faith in them anymore. it's been a difficult and confusing few weeks, we've gone from being told our baby had a syndrome which "isn't compatible with life" and would die soon after birth IF he survived the pregnancy to then finding out our baby had died to delivering him and mourning what we thought was a "normal miscarriage" to then being hit with "it's a pmp" it has just seemed like everytime we think it can't get any worse we hit another brick wall of grief and shock. i truly feel for all of you ladies who have been unfortunate enough to go through cmp/pmp as it really is.... i can't find the words but I'm sure you will understand :-)
thankyou again ladies, and sorry for the big rant lol it's hard to talk to people irl about it as they don't understand and say things like "oh well, you an try again" which is SOOOO frustrating as obviously we can't, not for a while atleast! it's so nice to know all of you ladies understand :-) xxxx

hels29 Tue 22-Apr-14 21:47:47

Pinky,you poor thing, how sad! The specialists are the best and only people to deal with molar pregnancies apparently - I'm so sorry nobody diagnosed your pmp sooner. I can definitely recommend talking to the specialist nurses - it's so reassuring having someone know what to tell you. Totally understand where you are with the random bleeding and tiredness. I tried going on the tube today and had to lie down when I got home and that's three weeks post erpc ... Good luck, and let us know how you get on. Fingers crossed xx

Purplefrogshoes Wed 23-Apr-14 12:40:39

pinky I'm so sorry you have had such an awful time! I had real difficulty when first diagnosed, I couldn't sleep, eat or do anything. It so difficult as nobody IRL understands but posting here and on the RMC thread really helped me thanks

hels how is the bleeding?

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