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Molar Pregnancy - any experience

(50 Posts)
janiewoozle Mon 22-Oct-12 10:35:47

Hi Girls,
I had a D&C op on 4th October at about 7 weeks and i got the results back on Thursday to say it was a molar pregnancy. the doc is a close family friend and wanted my mum to tell me before the hospital called me to tell me as she knew i was still a bit emotional and delicate after the MC - still haven't heard from the hospital team. Even more emotional now as i will not be allowed to TTC for a year minimum. I'm pretty frightened about it all after looking online and was wondering if anyone knew anything about it. I am expecting the hospital to call any day regarding it and i'm sure i'll be a bit flustered / teary when they call so i was wondering if there are any questions you think i should ask them?
xx

mummy2benji Mon 22-Oct-12 11:40:58

I haven't had one myself, but I'm a GP and used to work at Weston Park Hospital in Sheffield - one of the 3 centres in the UK which manage the results and follow-up after molar pregnancy. Being given this diagnosis is always a horrible shock, as most women aren't aware of molar pregnancies and certainly don't imagine they might have one. If you google it, I am sure you'll get the word 'cancer' in the info you find - please don't let this panic you, the vast majority of them are benign and although need to be monitored for a time, very rarely affect subsequent pregnancies (98% of women who have a molar pregnancy have normal subsequent pregnancies). Choriocarcinoma is different and requires treatment with chemo - but even with this, it is the most curable type of cancer that it is possible to get, with very good outcomes. I find it a bit bizarre that you're still waiting for a call from the hospital to be officially informed, and you've only been told 'unofficially' via your mum which sounds rather unprofessional. It does however mean that they presumably can't have any concerns about you needing treatment, or they would have contacted you as soon as they got the result.

You'll need to give a urine or blood test once a fortnight initially for bhcg levels - these will be sent to your nearest of the 3 molar pregnancy centres if you are in the UK (Charing Cross, Weston Park or Dundee) and they will monitor your levels and check they continue to fall. After the first few weeks they will monitor your levels probably 4 weekly. When they are happy that your levels are remaining low, they will advise you that it is safe to try for another pregnancy - this can take up to 12 months.

On a more personal level, my close friend had a molar pregnancy - she found the info given by the hospital fairly poor and found it a real shock to begin with, but other than the regular tests which were a bit of a nuisance, it all settled and she now has a healthy little boy from her next pregnancy.

Hope that helps a little and feel free to ring your hospital and ask them what is going on if you don't hear from them soon. I would ask to speak to the gynaecology secretaries. Sending you a hug x

janiewoozle Mon 22-Oct-12 12:07:14

Thanks so much for your message and for the info. I also thought it was a bit strange not to have heard from the hospital officially. To be honest I'm going out of my mind not knowing the fine details about it all. I've been doing a bit of research online and there seem to be lots of good forums specially regarding the molar pregnancies so they will be a great help as well. I'm trying not to scare myself too much as I am aware it's a curable condition (i hate the word 'disease' - makes it sound so much worse).

Thanks again for your message and the hug was gratefully received smile i think i'll call the hospital this afternoon if i haven;t heard anything by then.

x

themammy73 Mon 22-Oct-12 16:08:24

I had a partial molar pregancy in 2006 which was discovered after returning the results of my D&C. I was monitored with blood tests to check that HCG levels returned to normal quite frequently at first, possibly every month for three months and then scheduled to come in at the 6 month mark for another. I was advised to wait 6 months before becoming pregnant again and to stay off the pill. Unfortunately I did become pregnant 4 months after the D&C: I was mortified and extremely worried but thankfully all was well and I have a very healthy boy who is now 5. I have since had another child and am now due my fourth baby in January and have had no problems since. The only thing is that after each pregnancy I need to go back and have my HCG levels checked to make sure they return to normal. It would appear that the molar pregnancy was just one of those things for that particular pregnancy. I do understand how distressing it is at the time as you are not only having to deal with the distress of the miscarriage but also any concerns over your own continuing health. I hope my experience might reassure you that things can be OK even after this experience. Best of luck and my thoughts are with you.

janiewoozle Mon 22-Oct-12 18:01:51

thanks themammy73 - it is really nice to read a positive outcome. i know deep down in my heart that everything will be ok in the end but it's just hard to be positive after the rollercoaster i've been on in the last two months. anything i read says 'chemo' and it just fills me with the shivers. i wondered what might happen if someone did find out they were pregnant during the time you are advised not to conceive, i'm really glad to hear tha tyou and your little one were ok.

i'm based in belfast so i think i have to register with the london hospital. i called my hospital today as i still hadn't heard anything and no one was able to tell me anything as the consultant was off. just have to wait to hear.

x

themammy73 Mon 22-Oct-12 19:43:53

Best of luck and try not to scare yourself too much - I did exactly the same thing! When I got the positive pregnancy test I felt really fearful for the first few days that it might be the 'mole' growing than anything like a pregnancy... thankfully all was normal. Mine was a partial molar pregnancy which I think is a bit different in terms of time frames etc for things than a complete molar pregnancy but a doctor obviously will advise you the best way to proceed depending on your situation. Try not to worry, this will pass and although it will never be forgotten as you have lost a baby, you will go on to have the same tiny odds of this happening again as anyone else and have other healthy, happy pregnancies.

AnyaKnowIt Mon 22-Oct-12 19:48:51

Sorry op no experience but could these people be helpful?

www.molarpregnancy.co.uk/

((hugs))

janiewoozle Mon 22-Oct-12 20:04:45

thanks themammy i really just want the bloomin hospital to contact me so i know exactly what the score is...was it partial or complete and what my hcg levels were / are. i hope they call me soon.

and thanks anya yes i came across that website - it has lots of good info on it smile

all hugs very welcome xx

RuByMaMa Mon 22-Oct-12 20:10:21

Hi Janie

I went for a 12 week scan in January where they found no fetus and suspected a molar pregnancy. I had a D&C a few days later and when they tested the samples taken, they confirmed I had had a complete molar pregnancy. I was then referred to the centre at Dundee hospital and sent urine samples regularly (every 4 weeks) for 6 months. I got the all clear at the end of July. Personally, I didn't find it as upsetting as when I had a MC a few years ago. Perhaps this is because I viewed it as more of a 'medical' condition as opposed to a 'loss', because I was never really pregnant iykwim (with a compete molar pregnancy there's never a 'fetus' unlike with a partial molar pregnancy where there is a fetus, albeit genetically abnormal). This was just me however, and many do find it understandably a traumatic and upsetting experience. Like you, I found the mention of chemo on many of the websites I looked at rather daunting. However, it is very rare to need it and even if it is necessary, it's 100% treatable.

It seems a bit poor that you still haven't heard from the hospital officially. If you still haven't heard from them after tomorrow, I'd contact the helpline at Charing Cross for some advice on what to do next. If anything, they'll probably be able to give you numbers to contact closer to home.

As mentioned by a previous poster, the sending of samples seemed a real nuisance and it felt like we had to wait ages before we TTC again. Having said that, I am now pregnant again and due to have an early scan on Thursday (I should be 7.5 weeks) at the EPU. Keeping my fingers crossed but feeling pretty positive about it at the same time.

It's also worth remembering that your hormones will still be all over the place, so just be kind to yourself and take it easy and you will get there in the end.

Hugs xxx

hazeyjane Mon 22-Oct-12 20:12:48

I had a mp in 2003. Mine was persistent and I did have to have chemotherapy. This type is however very, very rare. It was a long haul at the time, but we have since gone on to have 3 children. My care was based at Charing X, they were pretty amazing, and the women that I would phone for my results were always incredibly helpful.

Please pm me if you want to, I am happy to answer any questions, amd will keep an eye on this thread to see how you get on.

hazeyjane Mon 22-Oct-12 20:15:06

this is the website for charing x molar service, with contact details.

janiewoozle Mon 22-Oct-12 20:24:09

hi rubymama thanks for sharing your experience. and congratulations on your pregnancy, and i hope your early scan goes well smile

i think i'm just quite emotional because it's been such a crazy couple of months. we found out we were pregnant, then when i went to the doc to register the pregnancy i said i had a bit of cramping in my lower abdomen so she sent me straight to a&e with suspected ectopic. feeling upset by that but then told by the consultant that it wasn't ectopic at all but in fact he said we were expecting twins! back for the next scan about a week later as they wanted to monitor me and it was then that they said one was no longer growing and they could no longer see the heartbeat in the other. then to a specialist and the d&c. just as i was getting over the loss an feeling really positive and wanting to ttc straightaway, i get the news that it was a molar pg and that we won't be able to ttc for a year.

so i think my emotions are just totally exhausted. i was so devastated when i was going for the d&c, and i think now i'm just questioning everything...was it maybe not twins at all? were all my dreams about two little babies complete nonsense? i think i am sad about what could have been and that my thoughts about what would be in the future were completely wrong all along.

sorry for babbling on and on. i just feel a bit like i've exhausted discussing it with DH, he is trying to be positive about the future and i'm just not ready yet to be as positive - i know i will be, but just not yet.

janiewoozle Mon 22-Oct-12 20:56:01

Aw thanks hazey sorry you had to go through all that. Glad to hear you made a full recovery, but I guess it felt like a long journey. Fingers crossed this year goes quickly, I think I need to plan some fun stuff smile xx

hazeyjane Mon 22-Oct-12 21:49:56

That is the thing with any miscarriage in the early stages i think, it is as much about the loss of those hopes and dreams as anything - which is why i don't think it makes a lot of difference if it is a complete or partial mole.

Fingers crossed you have a short journey up the mountain, and then can look out over the future. The day after i had my last bout of chemo, dh and I decided to run away and get married. i wanted it to be the year of something wonderful, rather than the year hazeyjane did chemo!

I will be keeping everything crossed for you, hope you hear some news soon.

janiewoozle Mon 22-Oct-12 22:10:17

Love it! A positive attitude is totally what I need and I know I'll get it someday soon. Think we need to book some sort of adventure so that this year isn't ALL about the waiting. If I had the money I'd book a mega holiday but sadly funds are low!

janiewoozle Tue 23-Oct-12 13:57:03

Hi girls,

So i got the call this morning from the hospital (finally) and they advised it was a partial molar pregnancy. they weren't aware what my hcg levels were when i had the op - they didn't test then as i wasn't having the d&c for that reason. so they've advised that the team at Charing Cross will be in touch about going forward and getting the testing kit sent out to me.

lotsofcheese Tue 23-Oct-12 19:55:33

Hi janie I'm so sorry to hear about your m/c - finding out it's molar is a double whammy too. In some ways, a partial mole is the slightly better option as it is very unlikely to require chemotherapy (only 1-2% cases). Although that's probably no consolation after a m/c & the shock of it all.

I wonder if you've joined the forum at molarpregnancy.co.uk? It was a good source of support & information to me when I had a complete molar pregnancy a year ago.

I was fortunate not to require chemo - and my levels were virtually zero from the 1st specimen. So I was allowed to ttc 6 months from my ERCP date.

I fell pregnant again after getting the all-clear, but sadly miscarried after 11.5 weeks. (In future pregnancies, no matter what the outcome, you will have an early scan at 8 weeks to ensure the molar tissue hasn't been triggered by pregnancy. And samples at 4&6 weeks post m/c or delivery).

If you can try to find something positive to focus on during the ttc embargo it will help take your mind off things eg decorate a room, take up a nightclass etc.

Wasn't sure if you've been told to avoid all hormonal contraception? Condoms all round (or a coil).

It's a horrible time, but it does get better. Take care of yourself

janiewoozle Tue 23-Oct-12 20:55:12

hi lotsofcheese
thanks for your message, and sorry to hear that you have been through it and another mc as well. i have just signed u to the website - thank you for that - there are plenty of reassuring experiences from other people with or who have had the condition. god to be able to share thoughts and fears and feelings with people.
and yes DH wasn't best pleased about the condom situation!! but needs must i suppose! annoying as my pill really helped my skin and now i am a spotty miseryguts!

thanks again for your message, xx

lotsofcheese Tue 23-Oct-12 22:07:32

I should have also mentioned that I'm now 10 weeks pregnant at the moment - duh!

janiewoozle Tue 23-Oct-12 22:15:03

oh congrats!! brilliant news smile blame the baby brain for forgetting to mention it! wishing you a very healthy and happy pregnancy x x x x

lotsofcheese Wed 24-Oct-12 18:15:30

Thank you! Scan today went well, huge relief.

I always felt after the molar pregnancy & ttc embargo it was very hard to stay positive & becoming pregnant again seemed so far off - so it's nice to share a positive story with you xx

artifarti Wed 24-Oct-12 18:33:31

Hello janie. Sorry for your loss. I had a complete molar pregnancy in January 2011 and it was a sad and scarey time. I have since gone on to have DS2 but I will never forget how dark the first half of last year was at times.

The websites that have been recommended I found very helpful and I also agree with the poster who said to try and do something to take your mind off it whilst you can't TTC - I trained for a 10k and travelled to China! My old thread is here Old thread - some very kind people posted about their experiences/suggestions etc. on there so there might be something useful.

Try not to worry about the chemo - especially for a partial molar, the risk is very low (1.5% I seem to remember) so I doubt you'll need it. You will need support, however, especially in a few week's time when everyone else has 'forgotten' that you had a miscarriage. Take care - it definitely does get better smile

janiewoozle Wed 24-Oct-12 20:59:13

brilliant news lotsofcheese i'm sure you had a huge sigh of relief smile i'm so grateful for everyones messages and positive outcomes - they're invaluable right now and really are keeping me sane.

artifarti i have just read your whole thread and i really appreciate you sending the link. it's good to know that nearly everyone seems to have had a baby since the mp. i'm in the mindset that there's no point in worrying myself to death about it as stressing won't help and certainly won't make the months pass quicker. i'm allowed to be sad and i'm not going to feel guilty if i need a bit of a curl up on the sofa if i want to.

not many people know that i had the miscarriage and d&c and DH is a bit funny about telling anyone about it. but i know i need to tell people..i did tell some close friends who knew we were ttc - it was my way of dealing with it and talking about it made me feel better. it might be a different story about the molar pg as it's the explaining everything that might make it more irritating.

we got married in april and a few people have asked 'when are we going to hear the pitter patter of tiny feet' and i feel like punching their faces in. if only they knew how what we'd been through and how desperate i was.

i did register on the molarpregnancy.co.uk website but not many people seem to post on it - it's good to read through the old threads though.

thanks again for your messages girls, it means the world to me that there are people out there willing to share their experiences. it's such a help. xxx

<virtual group hug>

janiewoozle Thu 25-Oct-12 10:47:31

hello again, i was just wondering if any of you suffered from lower abdominal pain - almost a the crease of your tummy / top of your leg?

i had this pain from about 5 weeks and that is why the doc initially sent me to tha&e to check it wasn't ectopic. After some urine tests it showed up that I had a UTI and they gave me some amoxycillin to try to zap it but not successful. after the MC they gave me some stronger antibiotics which seemed to take the pain away while i was on them but i have woken up this morning with really bad pains in the same area - so bad that i'm feeling a bit sick with it and finding it difficult to sit at my desk in work.

i have read that some women with molar PG get lower abdominal pain but i'm just worrying myself that it's something other than the UTI coming back sad

artifarti Thu 25-Oct-12 16:48:12

Hi janie - I don't remember having this as part of the molar but I do get pains there around the time I ovulate; strong enough sometimes to double me over. Could it be that? I doubt it's anything to do with the PMP but call Charing X if you're concerned - they are usually lovely and very helpful. <hug>

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