Molar Pregnancy - any experience

[janiewoozle]

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

thanks girls. i got speaking to my doctor this afternoon and she said my last urine tests came back clear (i did a sample the day she prescribed the super dooper antibiotics) so unfortunately it isn't that. she advised me to contact the hospital and ask for an ultrasound. couldn't get speaking to anyone so will have to wait until tomorrow to try to get through. not sure about the ovulating as it's a different kind of pain...if you know what i mean...not crampy more daggery - talkingtwaddle my own language there i know!

also received my test kit today from charing cross - all looked a bit daunting and made everything very real :( i was hoping they might write to me to say they had made a huge mistake and actually i was totally fine .... one can dream eh.

xx

Try not to worry too much - your body has been through a lot recently so it wouldn't be surprising if bits and pieces are twanging about a bit (to use the medical term ). Hopefully the ultrasound can put your mind at rest.

Ah yes, the kit is something else, isn't it, with all the scarey-looking nuclear symbols on the box - my hospital blood department used to get quite excited when they saw it, like it was a rare one they could tick off on their collection! It's a strange process, I'm not sure it ever felt 'real'. When is your first sample due?

aw thanks arti it was still painful today - got speaking with the hospital but they advised i would have to be referred by my doctor. went to see a gp (not my normal lovely lady dr) and he was awful. made me feel like such an attention seeker and basically made out that i was being a hypochondriac :( felt so deflated afterwards (even more so than normal at the mo).

he firstly asked how i was being treated for the PMP and i said i was just starting the test / monitoring process and that there was nothing to treat it unless my levels didn't drop on their own etc etc etc (honestly if i have to explain this one more time!!!) i explained that i would only get treatment ie chemo if the levels didn't drop. he went on to say that he had never known anyone to have to get chemo because of a MP in all his years of being a gp and i explained that i was aware that only a small % of women do have to get it and he just shot me down as if i was being a drama queen. felt my tummy a bit (not even in the place where i said it was sore) and went off to his desk as if i had wasted his time.

he said that as there was no bleeding and no abnormal discharge and i could wee and poo without pain then there was nothing that could be causing the pain and he couldn't see why a scan would come up with anything and basically sent me on my way.

i had to go to him for something else years ago and i thought he was awful then as well and i was dreading having to go to see him and he was just a horrid as ever. his whole tone just sends shivers up my spine.

but on the upside, i have sent off my first set of samples this morning (i was at the nurse this morning who got very excited - in a sympathetic way - as she'd never heard of it) so just wait and see what cx come back with. not sure how long it takes for them to come back.

i also signed up to go to their patient info / forum day in december...did you ever go to the hospital?

sorry that was a mega rant!

What a horrid doctor, poor you! Like you need that kind of crap at the moment.

I used to send off my sample on a Thursday and call them on the following Monday afternoon. I don't think they call you unless there is a problem but they are happy for you to call them. So maybe give them a ring next Tuesday?

I did go to one of their patient info days, yes, and it was useful and nice to meet other freaks . The only 'bonus' of having such a rare condition is that you get the opportunity to speak face to face with the experts. They will also go through your records with you individually so you can ask questions about the scan/bloods/anything else.

Hope you have some in for tonight. x

i know, i have a sudden urge to get totally smashed tonight!!!!! got the m&s dine in for 2 meal deal and and extra bottle of wine along with it ;) so i think its time to get the jammies on and the wine poured!! hangover here i come!

had a bit of a breakdown just now and couldn't stop sobbing...thing DH is beginning to get a bit confused and irritated as to why i can't just get on with it. hormones still must be up the left.

at least it's friday! have a lovely weekend girls, i'll put my results on here on tuesday. xxx

During my 6 month waiting period, I pledged to drink at least one new cocktail every month

I think it is very difficult for DH/Ps to understand. They get over it very quickly - my DP used to confess that he just didn't feel about it like me. I found that even when the hormones had settled I would go through very upbeat phases and then very depressed, miserable phases. It's not easy, any of it.

Enjoy your wine and I'll be looking out for you next week. x

totally. i tried to explain to him that my emotions were going up and down all the time and it could take one little thing to just set me off but unless you're experiencing the feelings, then i guess it's difficult to understand or even sympathise.

i like the cocktail plan. i might steal that one :) i could drink a whole cocktail menu tonight though ha!

x x x

Well girls I got my first results back, bloods are 220 and urine 76 and the lady said that was good and low for a first result fingers crossed they're a lot lower in 2 weeks xx

Great news janie. How you doing?

thanks arti :) hopefully it'll get lower quickly. it's 4 wks tomorrow since the d&c so would be so amazing to get down withing the 56 days but not sure if that will happen. luckily work has been uber busy so i haven't had much time to google! i did order the 'my molar pregnancy' book - think i might give it to my mum to read after i finish it.

xx

woohoo bloods are down to 60 and urine 16! so at least they're going in the right direction!

xxx

That's great news, Janie! Are you within the magic 6 weeks?

Sorry if this is TMI, but having AF brings your levels down too - as this clears out any tiny leftover bits of molar tissue.

But HCG needs to drop below a certain level before AF can occur.

And once your levels are at target, it's almost unheard of for them to rise again - or so I was told.

thank you lotsofcheese i had to ask the lady to repeat a couple oftimes as i had convinced myself i'd be getting a higher result for some reason. i'm not sure what the magic 6 weeks are!! is this the time after op ....i had my d&c on 4th October, so it was 6 weeks ago on thursday coming. the documentation they sent me stated 56 days from d&c to zero levels being good for less monitoring.

i have a feeling that AF may be on her way - had the EWCM last week (sorry totally tmi!!!) however my cycles were 50 days so always a bit wtf. never wanted AF to come so much in all my life!

xx

Great news janie! When is your next test?

lotsofcheese is right about the AF too - I had mine (which was - TMI - horrendously heavy) and the next result was normal.

Hope you are managing to get some cocktails down you?

oh thanks arti not looking forward to the arrival of AF, i'ver ready this first visit will be a heavy one :( but sure at least things are on the up (or down ha!)

getting tested every 2 weeks so would be good if AF came in between.

and too many cocktails - a new bar opened near my work and they have cheap cheap cocktails after work on fridays..... let's just say last saturday was a non event!

hope you are both doing well. thanks so much for popping by xxx

Hey girls, well my bloods are down to 29 now, was hoping for less as my 56th day is tomorrow but can't do anything about it, think I got my hopes up a bit much

Hope you are all doing well xx

Thanks for the update janie - from your previous posts, it looks like your blood levels have halved within 2 weeks. That's great! Guessing you're still on fortnightly testing? I was only ever on monthly urine tests ( the system in Scotland is different).

In fact, you've just reminded me that I need to phone Dundee & tell them I'm pregnant agin (16weeks - oops)!

Hi There

Really so sorry to hear about your loss and worry. The follow up is very thorough and you do not need to be scared. I was under charing cross follow up. They are always there at the end of a phone.
I had a molar pregnancy 12 years ago and the support was terrible then. i found out in the post> there was no internet and no Mumsnet to share and the Dr new nothing.

The good news is thet things have improved massively. The follow up is thourough, if a little cold. I went on to have a completely normal pregnancy right after. In fact 3 months after which was unitended and not recommended. The second pregnancy felt so different. They checked my blood after my daughter was born and they were really thorough. They won't let you get ill.

11 years later and I am 45 and pregnant again. Just had my three month scan.

It is a really sad time when you have a molar pregnancy ,one of my sadest. But please give yourself time to really rest. The hormones from the m pregnancy can make you feel really ill and washed out. You will recover and you will go onto having a normal pregancy.

I think I became closer to my daughter because of what I had been through.

Warmest wishes to you and ask me anything. Big hug
C x

janie - great news that your count is down, although I know how frustrating it must be not to make the 56 days. But the time will fly by. Have you got lots of things planned for the next few months? I find that that really helped. Are you going to an Open Day in December?

hey girls, thanks fr your messages! lotsofcheese and arranoxford congrats on your bumps! hope you are both keeping really well :) thanks for your lovely messages of support. still doing the fortnightly blood tests - the nurse in the gp surgery is lovely and is really interested in it as she'd never heard of it before which is nice!

arti i did book for the open day but i actually have to cancel as i'm going to be away with work which is annoying. i hadn't booked my flights yet as i had convinced myself i might be down to normal but alas...!! wishful thinking!

i'm currently booking some nice spa days with my friend and also helping another friend plan stuff for her wedding so at least i have some nice things to look forward to :)

hope you all have a lovely weekend, i'm planning on vino a-go-go!!

x x x x

girls - i just got the best frickin phone call ever! Charing cross rang to say they made a mistake!!!! a specialist has looked at my d&c results again and what they saw wasn't a molar pregnancy at all, but some fairly normal watery cysts!!!!!

i can't believe it - i started to cry down the phone i was so happy!! so they want to monitor me just for a little while as normal but i won't have to wait for the 6 month follow up monitoring!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Oh janie that is such good news! Wow, I've never heard of that happening before!

Oh Janie that's just brilliant news!! But absolutely surreal at the same time, that you've been misdiagnosed & through a stressful ordeal too. But wonderful news at the same time - crack open some fizz & celebrate!!! Xx

Thank you! I'm currently half way through the bottle! I'm waiting for someone to pinch me! I'm just waiting for them to call back to say oopsies actually they're wrong! I feel the hangover tmro already but I don't care!!!! Waaaaaahhhooooooooooooo