Partial molar and molar pregnancy support thread - all welcome!

[MrsJohnDeere]

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.

Any news nelly? Thinking of you. Hope it's all ok x

hi ladies. Spoke to charing x on Friday. They told me to go to bed and stay there. That if it carries on I may need an embolisation. If it gets worse over weekend get straight to a hospital, if not call charing cross on Monday to discuss. My next levels should be ready by Monday. So I'm taking it very easy. xx

Hope it eases off nelly and you can avoid it ! Fx your levels have dropped, take care xx

Hi ladies, thinking of you Nelly hope you were ok over the weekend and that you get some positive news today x

Hi ladies thanks for your thoughts. I hope you're all doing well. I'm back in Charing X on 100% bed rest after a big bleed this morning. Here until at least Wednesday. x

Grrr I hope that you're going to get OK Nelly.

I did find it rather peculiar that, having been more or less ignored with the bleeding for 3 months, suddenly it became important enough that I got transferred by ambulance to Sheffield... despite having been out in the park, walking the dog on the day I went in.

Hi all
I've not messaged for a long time.... but need some advice/coaching/help.

I had a cm in April 2012 and it developed into Persistent Troph Disease; so had Methotrexate and when that didn't get rid of it went on to the next chemo, Act D.
Basically my last Chemo was 23 Sept, and I am still feeling tired.
I have a 3year old, and even though I am lucky enough not to have to work, I am still exhausted by daily life.

Has anyone else had 3 months chemo??
How long did it take to feel normal?
I am taking iron supplements to help my iron levels (I am a little anaemic) and Vit C to fight the winter viruses.

Generally I feel ok...but am on-the-whole fatigued, & the waves of extreme tiredness can hit really fast and it makes me mad and frustrated; because my tolerance of everything & anything goes out the window. This includes dealing with my toddler and when I shout at her it makes me very sad.

PLEASE any advise on how long I will feel like this.
I hate feeling tired all the time.

Good luck to all those dealing with this super stressful disease.
x

sorry- *meant April 2013

Hi Lucy, sorry you're feeling like that. I just had the methotrexate (9 cycles so nearly 5 months) - that knocked me out and shot my fitness. I've never got back to being as fit as I was - but was back to moderate fitness after about a year - sorry that's not what you're wanting to hear - however, its a lot for your body to cope with and you've got a young child too which can't be helping. I had lots of carob for iron levels - I know its not chocolate, but I added the powder to yoghurt, made hot drinks with it etc - I'm sure it helped.

Hi everyone, just been looking for advice and support on mps the lack of information is so frustrating.
Went in for my 12 week scan only to be told they suspected a mp
Had a d&c same night. Waiting to hear from the hosp wrt results. Really worried about what it could mean. :(

Hi abundance i recently had a complete molar pregnancy I had to wait a while for results and now do monthly pee tests as my hcg is now normal! it can be quite scary in the beginning but most people don't need any further treatment just the six month follow up, do you know how long it will be before your results are back?

I'm freaking out a bit today, AF really late and I woke up with really sore boobs due to do the pee test tonight but won't get results till Thursday, my hcg has been Zero for nearly four months, a regrowth is unlikely? < hopeful>

Hi all,

Purple I hope you are feeling better and that you get good results tomorrow that put your mind at rest x Abundance how are you doing? I found the charing cross website to be a great source of info which helped me to get my head around things x

thanks sunshine just got results hcg still 0 woohoo! goodness knows what has happened to my AF!

Glad things are OK purple!

Glad to hear that x

Bumping for Psmith

Hi, I had a missed miscarriage at 11 weeks found at scan. Baby had stopped growing at 7 1/2 weeks. I was told I would have to wait 4 weeks if I wanted to have a d&c but I felt this was to long and worried that I would take a infection, So I chose to have the medical evacuation a week later. On that day was fine every thing came away ok and was sent home.

2 weeks later I have a call asking me to return . Well it turns out that I have had a molar pregnancy. They can't tell me what type as of yet.
They said they couldn't detect any fetal cells, which would suggests a full molar but nurse and I saw what looked to be a foetus there. And on the scan it looked like the image of a 7 week baby. They have sent it away for more testing. I never had morning sickness nothing at all. In the scan I had 2days ago there was still signs of molar. But there leaving it as I had a negative pregnancy test.
I am heart broken as suddenly this is not about my baby I lost but about my health. It's my second mc one in November just past.
i am lucky to have my son who's nearly 4. But I am very worried as am just waiting to find out what happens next.
They have passed me on to Dundee who I phoned yesterday but said they were waiting on all my notes getting sent and they take about 4weeks to get ball rolling. I've not even had a blood test. I am worried with them saying there is still molar still showing in the scan and there just leaving it. I am just so comfussed Xx

Also just want to say I am so sorry for every one who finds the self going through this. It's just gutting Xx

Hi gemma I'm so sorry it's a real kick in the teeth isn't it? I recently had a complete molar pregnancy and I am also being followed up at Dundee, I only ever seen pregnancy sac on my scans. It is very good that you have had a negative pregnancy test, I took months to get a 0 hcg, my follow up took a while to sort out too, you will probably have to do the 12 hour wee test, at 8pm you pee and from then on all pee had be be collected in a huge jug until 8am next morning then you put the tiniest amount in the bottle they will send you and post, if you send the sample Monday you can usually get the results by Friday, I never had blood taken. Its very scary at first as no one has a clue about mp and I was all over the place for months but it does get easier

Hi Gemma so sorry to hear you're going through this. I had almost exactly the same as you in nov. had op to remove everything. after they said it was probably partial they did another scan and said there was still molar looking stuff left behind. Waited a few weeks and had a heavy bleed in this time. On re-scan all matter was gone. Just had normal test results back from chx. It's been a long and painfully process but we've got through and hopefully can put this all behind us. Hope you get a good outcome soon xx

Thanks for your replys, in one way I would wish they would do the d&c to get as much molar away, but then second thoughts no one wants a op if there is another option. (Wait on it coming away with the next period)But suppose I will no more soon enough. So a collection of urin over 12 hours. Is that for every single urin test. Also I feel little pains in my lower bellie. I no Iam being supper sensitive. It will be 3 weeks on Thursday since I had the medical managment. So I am hoping my period starts next week or that's when I am expecting it. Can any one tell me how bad it can be? Will it be bad to the point I can't leave the house . Thanks in advance Xx

Yes you have to do that for every urine test, I had quite a bit of pain at the start and my first period was very heavy but manageable and I felt so much better afterwards. I hope Dundee get things moving quickly for you xx

last pee test this weekend how is everyone?

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. 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)