Does anyone have experience of molar pregnancy? Bit shocked here

[artifarti]

I had a miscarriage and ERPC three weeks ago. Was just starting to recover from that when I got a phone call from my EPU today saying that I had had a molar pregnancy and am being referred to the specialist unit at Charing Cross Hospital. I have read all the information and am just a bit in shock with it all now. I know that the prognosis on all fronts is good but just can't quite believe it's happening to me. I wondered if anyone else had been through this and what their experience of it all was. Thanks in advance.

So sorry to hear about your miscarriage :(
Did they tell you if your molar pregnancy was a complete or partial molar?
I had a partial molar pregnancy last April, like you diagnosed following an ERPC. I had bloods taken on the day to find out the level of hormones in my blood and as it was 8 weeks following the erpc the levels had dropped to safe levels.
I was referred to Leeds? I think there are 3 hospitals in England who specialise in molar pregnancies and the monitioring afterwards. I never had to visit the hospital but did have to send urine samples for 6 months until I got the all clear. No ttc for that time either.
You should recieve a letter from them within a couple of weeks to advise you what they are going to do, this I think will be dependant on which type of molar preg you had.
Best Wishes

Thanks for answering PQR and I'm so sorry you had to go through this too. They didn't really tell me anything and I was too shocked to think to ask anything much. Apparently my hospital have posted a load of information and I then wait for the info from Charing Cross. I feel like I have lots of questions but my EPU were very matter of fact about it all (though nice). I hope that all is better for you now.

Yes, I had one in April 2008 - it was partial, and I had some molar regrowth, so I had 2 ERPCs in the end and was signed off in December 2008. I then got pregnant with ds in January 2009, and he's just fine. It is scary and a shock, but the prognosis is excellent and UK support is brilliant. Our local hosp was the Scottish centre, and was fab. I've heard nothing but good aboyt Charing Cross's unit either.

I had a long thread of my ups and downs which I can't find - if it helps, keep posting with updates.

Ok - here is my thread.

Hi there, Sorry to hear about your loss and molar diagnosis. There is an excellent website: www.mymolarpregnancy.com/ with tons of information and a fantastic support group. The founder of the site also wrote the book My Molar Pregnancy which you can buy on Amazon. It contains lots of womens stories about MP that you might find useful. I hope your numbers come down soon and recovery is fast xxx

Thanks so much for posting the link to your thread Habbibu. I have read it in one go and very uplifting to read your joruney through it all to the last lovely post, although so sorry for all you have been through with your DD1 and then MP.

And thank you for the link and book mummyabroad, I will certainly look into them. I'm sure I will feel better when I am linked up with CX Hospital; at the moment I just feel a bit lost, as my hospital have just referred me on.

It's all a bit mad - been a bit of a crazy 5 years, but we are all really happy. Still miss dd1, and wonder what life would have been like if wee moly had made it, but have found a home for those feelings, and live at peace with them.

It is a shock, and will take a while. Should warn you that if you get regrowth (as I did) it can lead to very big sudden bleeds - no pain, and nothing ultimately to worry about, but unnerving when they happen (and downright inconvenient when you're on a walk on the beach).

Sorry - slight name change!

Just reading my thread again and remembered how crap I felt. I'm really sorry, arti - it's just crap and sad and a bit scary and dispiriting. Keep posting and we'll help you through it.

Thank you. Don't know what I would have done without MN recently. It was meant to be my 12 week scan today and instead of going into work to tell them the good news I'm going to have to tell some of them that instead of a baby I grew a tumour-like thing. Nice.

Oh, I know. You poor love. It's crap to have to say bad news, and then explain, and then have people look blank and... Bah. Come on here later and rail a bit if you want to.

Arti, I had a molar pregnancy in 2003, which I wrote about on Habbibu's thread .

It was a long and at times scary journey, and I wish I had had Mumsnet then as I think it would have helped to have talked to someone else who had been through a similar thing (I've only met one other person in rl who had a mp)It is such a difficult thing to explain to people, and I found that even drs didn't know what I was on about sometimes!

I would say three things

1)Don't be scared by other peoples mp experiences, there is a wide variety of mps, and various levels.

2)Personally I found Charing Cross really helpful. Their phone and follow up service have been wonderful, and I have always found them really great when I have rung with any queries or worries,

3. Keep posting on here, as Habbibu says, we'll help you through this.

Look after yourself, and let us know how things are going.

hello, hj! I was hoping you'd pop in here.

Thank you both so much - and so sorry that you had to go through this too hazeyjane. Today has actually been okay as work is good and busy. It does get very boring having to explain it to people though, especially when you'd already done all the explaining about the miscarriage three weeks earlier. Everyone so far has been very sweet though. I even managed not to get upset when my hospital phoned me to find out why I hadn't turned up for the 12 week scan that was supposed to have been cancelled by their colleagues.

Trying to think of lots of positive things to do in the next few months to keep healthy, happy and busy. Off to friends for a long weekend and then hopefully when I get back I will have some information from the hospital/s. I haven't received anything from Charing Cross but do you think they would be okay if I called them on Monday with a query? I'm supposed to be travelling to Nairobi with work next month and need to check whether that's okay or not.

So tired today. DS in bed. Off to scoff fish and chips.

Definitely call them - they might need to tweak when your samples are submitted so as to fit in with your travel. PITA on the scan too - I got the letter from Ninewells - they were horrified when they realised, and they're actually usually brilliant about this stuff. No matter how much you think you've processed, those scan reminders just leave you feeling very bleak, I think.

We had fish and chips tonight too. Hope yours were good. You'll have to invest in a pisjoeg

arti just checking in on a couple of threads here and seen your news.
So sorry to hear it, ((big, big hugs)). Thinking of you and hope to keep hearing from you.

Do you want me to mention sth gently on the TTC thread, we'll all be thinking of you. Xx

I had a partial molar in 2006, really wished I'd had MN too at the time.

I was referred to Sheffield and they were fantastic. All my tests have been good and they let me TTC much earlier then normal due to several factors including my age.

Like others have said, don't try not to read too many personal stories, it can be easy to scare yourself.

Yes give them a call, I still call them now with random enquiries and they are always really helpful.

Very jealous of the fish and chips (I am getting the virtual salt and vinegary smell hmmmmm)

I'm wondering if Cath Kidston might be interested in a 'pisjoeg' to add to her extensive range, it would probably be called something twee like the 'spend a penny jug'.

pisjoeg [shudder]

Hello Blackkat and thank you - I keep meaning to pop back and say what's happened. I think I will. Everyone on that thread is very lovely.

Pedlars probably have them for £700.

Joking aside, arti, get a reasonably big one. i was up and down all night before my first sample and produced an enormous amount.

I still laugh at Aitch's line about "as if that mimsy article could have contained my golden offerings".

Off for the weekend to try and forget all about this crap. Thank you all for your support so far and hope you all have lovely weekends.

Mummyabroad - I hear congratulations are in order!

Have a good weekend, Arti.

What's this mummyabroad????!!

Yes, I am up the duff! I would like to offer myself up as a post MP success poster girl, but my story is a bit wierd.

I will bore you with it

I had mmc at 14 weeks in March 2010, but 7 rounds of medical management failed to clear the uterus. I had a suction procedure (not D & C) to clear the last bit, but then 2 months later had massive tissue regrowth in my uterus and HCG of 258. My local doc here in Costa Rica and the head of Charing Cross Molar unit looked at the scans and said it looked like a classic case of MP (well partial as we had seen the embryo on a scan earlier) I had a D & C and the tissues (I was told there was LOTS) were analysed but then found to be NOT molar. I have never had a real explanation as to what happened and often wonder if the (Costa Rican) lab test results were simply wrong. (I had a lot of other indications of MP too, I was very sick while pregnant, had a very large uterus, very strong line on HPT at at 7DPO)

Anyway, after the D & C I developed Ashermans and it took a long time to get diagnosed/treated for that, so as it happens I have had to wait to TTC anyway (started in Jan this year)

Just had my bloods done and they are 59.1 at 12DPO (very feint line on HPT) I will get them monitored a few more times just for extra piece of mind.

Arti did you have a look at mymolarpregnacy.co.uk? I got great help from them, and even was emailed by a doctor from Charing Cross hosp, who helped review my case and advised me from abroad. Fantastic service in my view.
Have a lovely weekend. xx

Arti just popping by to hope you are doing ok love xx