complete molar pregnancy been confirmed

[leopardprintmama]

Well my worse fears are true my miscarriage was due to a complete molar pregnancy, ive just had it confirmed. So sad to have lost my baby in this way.

Im now registered with the molar pregnancy centre at Dundee. Just wanted to move on from the miscarriage and start ttc again but thats not going to happen for a long time........... 6 months to year.

Then there is the risk, albeit quite small of it turning into cancer. Such a horrible time for me at the moment, anyone had an experience of a complete molar pregnancy and got some tips on how to get through this.

At the moment im feeling really low because im so desperate to start ttc but know I cant, how do I deal with this feeling of extreme disappointment and anger of knowing it will be a long time til I can try for a baby. And how do I cope with the fear that this could turn cancerous.

Any comments from ladies who have had a molar pregnancy would be most welcome.

[timidviper]

Not experienced this personally but just wanted to wish you well and let you know that an old friend of mine had a molar pregnancy so, like you, had to delay ttc. She went on to have 2 healthy sons and to date (20+ yrs later) has no health problems that I know of.

Good luck

[ruddynorah]

I had a partial molar which needed no treatment. I did the urine tests for 4 months. I started ttc once my levels reached nil (despite the consultant saying to wait 6m/1yr) and we now have ds who is 2 at the end of this month.

It is a worrying and frustrating time. I found a lot of support on these boards, and plenty of hope for life, and babies, after a molar. I hope it all goes smoothly for you.

[leopardprintmama]

Thank you timidviper and ruddynorah for your replies. Both positive stories which is nice to hear, as ive been searching info on the internet and there seems to be alot of stories of people needing chemo and having reocurrent molar pregnancy. Thats my biggest fear at the moment.

My hope is that my hormone levels go down quickly and no treatment is needed and I can start ttc sometime in the near future. Hoping and praying that this turns out to be the case and taking each day as it comes.

Just had so much bad news over the past month or so that im finding it hard to think positive about anything

[artifarti]

Hi leopard, you may remember me from your other thread. I'm so sorry you've had the worst confirmed. As I said, the same thing happened to me in January of this year. We also seemed to be surrounded by bad news at the time. I am happy to tell you about my experience - I know what a lonely, scarey and confusing time it is. Please PM me if you want to chat off board at any time.

I had some brown bleeding at 6 weeks in Jan and a scan found what they thought was a collapsing sac. I opted for an ERPC. That was bad but I was just starting to look forward again and desperate to TTC when 3 weeks later I was told I'd had a complete molar. My feelings over the next few weeks were all over the place. First of all it's very scarey waiting to find out where your levels are - most people do not need chemo, please remember that - but also, I know what it's like to feel like you have already been on the bad end of a very big, rare statistic, so it's hard to take comfort in 80%. Have you had a negative pregnancy test or a period yet? If so, that is a good sign. If not, still no need to worry.

My first result came back at 6 (anything less than 5 is considered normal) so that was a big relief and my results after that went below 5 and stayed there. So I knew that the risk of invasive molar was practically non-existent. But I was very low for a long time. Some days I would feel upset. Some days I would feel angry - angry that it had happened to me, angry that other people were falling pregnant, angry that after an initial burst of sympathy, people very quickly forgot that it had happened to me. Some days I would just feel miserable. I got a bit obsessed with Googling it on the Internet. Sometimes I felt like a failure and for a while I hid away, especially from friends who had never had mcs or similar problems. I found that because I couldn't ttc, I couldn't move on.

After a few weeks, I went a bit loopy for a month! I suddenly felt more positive and I signed up for a 10k and started running and decided that DP, DS and I should all go to China for three weeks! I also decided to change career. I was desperate to fill the six months with something more positive. I'm glad I did all those things. But the negative feelings did come back again and poor DP had to put up with a lot of mood swings and ranting and raving.

Things are looking better for me now. I fell pg just before the end of my follow up although we weren't trying. That was nerve-wracking but all seems to be going okay and I have my 20 week scan tomorrow, fingers crossed all is okay. After the birth I will be tested again to make sure my levels return to normal and that would happen if I ever miscarried or had a baby again. Other than that, I am treated like a normal pg person though.

My advice to you (should you want it!) is to go on the forum on molarpregnancy.co.uk. There are lots of women on there who have been through or are going through the same thing. No question is too sensitive or stupid. For me, it was a very lonely experience and so having somewhere to go where other people knew what I was going through was a godsend. I also went to a patient's day at Charing X, where I was registered and got the chance to talk to the consultants and specialists, as well as other out-patients (I don't know if Dundee does similar) Other than that, I think I said on the other thread that the stories you will read on the internet all seem to be about chemo/recurring moles! This is not backed up by the statistics - the chances are in your favour. Have they sent you a testing kit yet?

This will sound like a bunch of crap but the six months does go very quickly. You will find your own way of dealing with it but don't be shy of seeking out any support you might need (I had some counselling which helped a bit as it took the pressure off me constantly wittering on at DP).

If you ever need to talk, rant, rave, wail etc., feel free to come and find me. I'll put a watch on this thread just in case. x

[artifarti]

Blimey, I went on a bit there - sorry!

[habbibu]

Hi there

I'm so sorry for your loss, and for the added complication of the molar pg. I had a partial mole in 2008, and was also under the care of Dundee. My son, conceived just after the end of follow-up, turned 2 last month, and we are all in great form. I know it's a very worrying and frustrating time, but I think the system for monitoring mp is really very very good, and Ninewells were just fantastic. Trish, the co-ordinator, is really lovely - I had to have a second ERPC to remove a little regrowth, and she came down to the scan rooms to see how we were doing, and ask if there was anything she could do, etc. You really are in very good hands, I promise.

This is my thread from that time. As others have said, keep busy, join the pisjoeg club (!) and it will pass. hazeyjane had a persistent mole and chemotherapy, and has since had three children - you might want to hunt her down, but I think she also keeps an eye open for these threads.

[leopardprintmama]

Thank you so much artifarti and habbibu. I found great comfort in reading your replies. Makes me feel a little less alone, molar pregnancy is defo a very lonely experience. Not had a period yet and havent taken a pregnancy test yet, will leave it another few weeks before I take one.

I can totally relate to your feelings artifarti, I find myself crying alot and it feels like everywhere I go there are pregnant women! Im trying to avoid googling it, as it makes me feel worse....... so many stories about people needing chemotherapy.

I think your advice about keeping busy and filling the 6 months with new activities is great advice. Because it seems to be when im unoccupied and alone I feel worse.

I will also take your advice about joining the forum as I feel like I cant talk to anyone about what im going thru right now as nobody has heard of the damn thing! I was asked the other day if molar id had a phantom pregnancy, that really upset me.

I will try to pm u artifart, just need to work out how to do it first! Im new to mumsnet.

[artifarti]

No problem lpm, we're about if you ever need to chat. Crying is normal, as is hating all pregnant women (except me, obviously ). Don't bother taking a pregnancy test - the hospital tests will tell you everything you need to know and to a far greater level of detail. Yes, I think the rareness of it is what makes it lonely - and I can still remember the looks of horror on people's faces when I explained to them that I'd had a miscarriage that caused potentially cancerous cells.

Have you heard from your hospital yet? Don't be afraid to phone them if you are ever confused or have questions - the only bonus of being a rare case is that they have the expertise and time to talk to you.

Keep talking. x

habbibu - I feel I must tell you that the pisjoeg is no more! They are, like, sooo 2008 . These days you get to pee in tiny little vials and send them off in radioactive parcels dontchaknow.

[habbibu]

Do you not have to do 12 hour samples any more? I used to have to decant from the pisjoeg into the little vial, and then seal it into the Big Tube.

[habbibu]

And hazey tells a tale of having to cart what sounds like a milk carton full of piss all over London...

[habbibu]

yy, lpm, phone Trish - she's ace.

[leopardprintmama]

no the hospital in dundee havent been in touch yet, im expecting a phonecall today or tomorrow from them. My registration with them starts today so its still really early days. I will be glad to hear from them so I can an idea what to expect over the next couple of weeks. And it will be lovely to speak to people who have expertise in this area

[pink4ever]

Hi leopard-sorry to hear that your fear has been confirmed. I know it is hard-especially since many people have never heard of molar pregnancy so it can be hard to explain. But it is still a loss and of course it is perfectly normal to feel upset.

I think I told you before that I was one of the small percentage of women who needed the chemo. Chances are you will not have to go though this but even if you do-charing cross and my local hospital were great and dont forget-I have gone on to have 3 lovely dcs-as have the majority of the women I met while having treatment.

Please feel free to pm me if you need any further advice.

[Rollon2012]

Never exsperienced this just wanted to give my condolences you have alot of good peers on here :)

[exexpat]

Think I saw your other thread. I had a complete molar ten years ago. Mine was a bit persistent, so I needed a further D&C about 6 or 7 weeks after the initial one as hormone levels were rising again, and I had to rush into hospital as I was haemorrhaging badly - so all a bit scary for a while, and it did look like I'd need chemo, but in the end I didn't.

After that it all settled down, but I did do the full one-year wait from the final D&C before getting the all-clear to TTC, and then got pregnant the first month. I had lots of scans early in the pregnancy to check everything was OK and no signs of another molar, but that time everything was fine. DD is now 9.

The vast majority of women with molar pregnancies are fine and don't need any further D&Cs or chemo, so I hope you are one of those.

[leopardprintmama]

Thanx everyone for your replies, sorry I didnt reply sooner I have been trying to avoid going on the computer because I just end up googling molar pregnancy and making myself feel more upset. Think ive just about looked at every website now so no need to google it anymore.

Ive just been registered with Dundee hospital and awaiting my testing kit, does anyone know if you post the urine sample yourself or if its done via my doctors surgery? I havent had any phonecalls, leaflets etc about the screening process so im still a bit in the dark about the whole thing. Nervous about the first sample I have to send as I guess this will give me an early indication of whether my hormones are falling or not.

Been a bit worried this week as my whole face has broke out in spots, which happened when I had the molar pregnancy so hopefully this doesnt mean my hormone levels are rising again.

Trying not to worry about this but im failing miserably, its constantly on my mind, hopefully I can soon learn too feel a bit less calmer about the whole thing, as if I can do this I know I will cope with this better no matter what the outcome is.

[danceswithfools]

Hi leopardprint, sorry to hear about your molar pregnancy. I had a partial molar pregnancy in 2006 and it was one of the most horrible times of my life. I was under Charing Cross and my hormone levels took ages to go down, at one point it looked like I might need chemo but I didn't. I think I used to post the urine sample myself, they used to send envelopes, but I had to go to the surgery to have a blood test every fortnight for a while. Like you I felt as if it was always on my mind for the first couple of months, but it got a bit easier. Just keep talking to people and try to treat yourself to some nice things when you can. The miscarriage association have a number you can call to talk to someone who has been through molar pregancy if you need to.
I don't know if it helps to hear this, but I went on to have DS who is now 3 and although you never forget your losses, life does get better again.
Take care.

[mistlethrush]

Hello leopard - sorry to hear you're going through this.

I started spotting at 10wks - had erpc - but was on hols so not at my local hospital - they said that they would inform both hospital and Drs if there was a problem - so my continued returns to the Dr because of bleeding were discounted for 3 months - until I actually went in to Drs just as heavy bleeding starting and someone actually examined me - got sent for scan next morning - in for 2nd erpc that afternoon. Unfortunately for me, that didn't sort it out - two weeks later after another bleed I went in (with just a book) and was immediately admitted, then shipped to sheffield the following morning. I had 5 months of chemo - but I had the injections not intravenous, so mainly done on an out-patient basis apart from the first stay.

From what I was told, despite having to have chemo, is that it isn't cancer - although it does act like it. So don't get all tied up on the C word. It isn't, and its treatable very effectively. Catching it early should mean that, even if you do end up having chemo, you won't have any other issues.

My son was conceived 18 months after my chemo finished - I was banned from ttc for a year. He's now 6.5 and perfect (well, as perfect as a micshevious, active boy is ever likely to get - with mud on).

The biggest impact (the tests, which I still do are no longer a problem as you don't have to do a 12hr test which was a real palavar!) has been that both of the m/c I have experienced following ds's birth have been overshaddowed by the worry that its coming back. My levels have taken months to drop down properly (3months!) resulting in panic, fear and scans. That combined with the fact that conception didn't seem to be particularly easy in the first place has meant that we have now decided that we won't be trying for a second child - there are too many things against us.

I hope all goes as easily as possible for you.

[habbibu]

Hi leopard

If it's the same as it was in 2008, you have to do a 12-hour sample, which means from (say) 8pm to 8am, every time you urinate it should go in a jug (hence pisjoeg -we thought IKEA should market them) - I'd have a glass or plastic cup to collect sample in and tip it into jug, as you can end up collecting quite a lot! In the kit there are 2 tubes - a wee one inside a bigger one - you note the total quantity of urine collected and the date on the wee tube, then pour some of the urine into the wee tube, seal, place inside the big tube, inside the envelope, seal and post. You'll maybe start with once a week, then if levels drop down to once a fortnight, then monthly, etc.

[habbibu]

Oh - just remembered that arti reckons I'm behind the times. The info from Dundee was pretty thorough, iirc.

[mistlethrush]

Hab - no, they apparently did a study and found out that a first thing in the morning sample was fine to go by and didn't need the 12hr one - about 3 or 4 yrs ago if I remember correctly. And, thanks to Royal Mail's new envelope size things, in order to cut down on costs, first tube is smaller than it used to be and you stick it in a bag with one of those seals you can open and close on the top (name escapes me) with some absorbant paper in the bag - and then in smaller envelope and hope that no one walks on the post in hobnail boots or similar, otherwise they'll have a problem on their hands (or feet)

I'm down to once every six months again....

[pink4ever]

mistle-Hi. sorry can I just correct you. Molar pregancy can in fact turn into a form of cancer-choriocarcinoma. In fact the majority of choriocarcinomas originate from a molar pregnancy. This is what happened to me-6 months chemo-high dose.

I think you are talking about a persistent or invasive mole which is also usually treated by chemo although is not technically a form of cancer.

Please be reassured op that it is unlikely you will need to have any follow up treatment-I think its about 10% who go on to require chemo?. Plus as I mentioned in previous post-this all happened to me 10 years ago and I have gone to have 3 dcs.

All the best.

[habbibu]

Ah, ok. That'll save a few midnight spillages. Who, me? Never.

[leopardprintmama]

Thanks everyone!

So much info to take in, thanks 4 the replies

[mistlethrush]

Pink - I was told that it effectively spreads like it (ie bloodstream etc) and can act like it (popping up anywhere) but wasn't the same and was very treatable in any case. But then I'm not in medcine and decided not to do any googling.

I see from a quick google that you are right - mp's can result in a form of cancer - but so can any pregnancy - doesn't have to be molar to result in it.

I also had chemo - I was lucky that I managed to get the diagnosis before it went walk-about too much.

How are you doing Leopard?