Partial molar and molar pregnancy support thread - all welcome!

(505 Posts)
MrsJohnDeere Wed 28-Nov-12 11:06:13

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.

MrsJohnDeere Sun 10-Feb-13 12:28:11

A little bit better. Temp is back to normal but still no energy at all. I've got a really busy week ahead and need to get better now!

Bleeding still heavy but not gushing. It is irritating more than anything. I'm going to hold on to speak to CHX tomorrow and see what they say. OOH service here is useless. I can't face A&E, and think it will complicate things (I will go there if I start haemorrhaging or am in pain.

nattnothing Sun 10-Feb-13 12:45:05

Hi Mrs JD - glad your temp is down maybe it has been the infection as well that has left you with no energy but glad its down now - hopefully you will start to get better.

I know what you mean - waiting in A&E is an nightmare and quite often they are not knowledgeable about molar pregnancy and any complications. ChX will be able to advice you tomorrow but may want you to get a scan - are you still known to your local gynae service? Here's hoping that things will settle a bit for your busy week ahead - if I can help in anyway just let me know smile

I'm feeling a bit better today - less pain but still bleeding but thankfully much less clots etc which is very much welcomed but also feel like all the energy has been sucked out of me.

MrsJohnDeere Sun 10-Feb-13 14:02:00

I've been seeing a gynaecologist privately. He is very clued up about all this, thank goodness. Due to see him again in a few weeks. I could see him earlier but I'm not sure that my health insurance will cover endless appointments.

MrsJohnDeere Mon 11-Feb-13 20:23:04

No results, no news.

Ashoething Tue 12-Feb-13 10:41:14

Have cx not done your bloods then? I will be thinking of you and am here if want a chat. All the best.

MrsJohnDeere Tue 12-Feb-13 14:34:02

Results back. Need chemo. Scared.

artifarti Tue 12-Feb-13 17:38:28

Sorry to hear that MrsJD. Holding your hand. It's not fair and it's not what anyone wants but all will be well. x

Ashoething Tue 12-Feb-13 19:23:40

Have pmd you mrsjd-dont panic. They have caught it and you will be fine.

nerual Tue 12-Feb-13 19:27:28

Oh no MrsJD, I'm really, really sorry to hear that. Sending lots of virtual hugs your way sad

MrsJohnDeere Tue 12-Feb-13 22:08:56

Thanks everyone. I will find out more tomorrow. I'm going to CHX for the patient information session < gulp, scary stuff> and apparently one of the doctors will talk to me about me too.

nattnothing Wed 13-Feb-13 12:53:12

Hi Mrs JD, so sorry to hear that and so disappointed for you. Thinking and praying that the treatment will be short lived and that you fly through it in no time. How are you bearing up today? Hopefully when you go to Chx you will feel more reassured as from what I hear they are excellent....

Lots of virtual hugs and keep us posted on how you're doing - thinking about you

MrsJohnDeere Wed 13-Feb-13 13:29:13

I'm ok. Coming round to it all. RL friends are being fantastic, one in particular. I feel very lucky.

I'm not at CHX today after all. Very frustrating, but all the trains are suspended in this part of the world, so I just couldn't get there. I had a great long list of questions to ask and was all psyched up for it. They're going to phone later with a date to in, probably end of next week.

nattnothing Wed 13-Feb-13 15:22:42

Ah that's so frustrating when you all set to get the info that would help reassure you, nightmare about the trains that's awful hopefully they will be up and running again soon but hang in there at least you will get sorted soon - hopefully your numbers havent risen too much and you wont need much intervention to get to that beloved zero number!

My levels were 77 today (12 weeks post D&C) - painfully slow decline and hoping they continue to fall - still having intermittent bleeding daily but Chx say it could be a period - hard to differentiate though when I've had some level of bleeding every single day for 12 weeks - have to sit tight and hope for the best, if the bleeding continues on and on I will have to be reviewed at Chx cross which means a flight...

Anyways hoping that things all work out soon for you and glad you have such great friends and support as this makes dealing with it a little bit easier. Take care of yourself and try not to worry - although i know its hard smile. Wish there was more we could all do for you...

nerual Fri 15-Feb-13 20:16:39

MrsJD how are you doing? Do you have your appt date for CX next week yet?

MrsJohnDeere Fri 15-Feb-13 22:18:14

I'm fine. Going in for chemo in about 10 days. They wanted me to go next week but it was too inconvenient (half term etc).

Ashoething Sat 16-Feb-13 17:01:33

Good luck mrsjohn-I hope that you get the very best treatment and are back to full fitness very soon. Please feel free to pm me if you need more info/a chat. All the best.

lotsofcheese Sun 17-Feb-13 18:23:27

Just to say I'm thinking of you, MrsJD. I've heard chemo is pretty successful, but I'm sure that's no consolation for you just now. Hoping it goes as well as it can. Take care of yourself xx

nattnothing Mon 18-Feb-13 18:33:17

Mrs JD hope it all goes well and will be thinking about you xx

MrsJohnDeere Tue 19-Feb-13 16:26:13

Thank you all for the kind wishes thanks

Going in next Monday. They do an ultrasound, chest x-ray and bloods and then take things do there depending on what they find. I fully expect to be sent home again! I don't feel at all ill any more or like someone who needs treatment, if that makes sense. Still bleeding, but not heavily.

How are the rest of you doing?

nerual Wed 20-Feb-13 12:21:04

Glad to hear you are feeling better MrsD. I am also fine, just a waiting game for me really. Have my booking appt on Monday and am going to try and make them give me another early scan...no further cramps or bleeding though, which is hopefully a good sign...

nattnothing Wed 20-Feb-13 16:37:15

Great news nerual - hopefully things are looking very positive now and would be great for you to get another scan to reassure you.

I'm doing ok - still bleeding fresh blood daily - period like flow (13 weeks post D+C), now starting to think that this could not be good. Get next blood draw tomorrow and hoping for the best. Gynae have now scanned me twice showing clots and thinkened lining of uterus - not sure what that means??? However, to date levels have been falling and 2 weeks ago were down to 77, fingers crossed for next result..... The waiting is killing me and the continuous bleeding is so frustrating....

Will be thinking about you Mrs JD on Monday and please let us know how you are keeping x x x

hazeyjane Wed 20-Feb-13 19:11:42

Mrs John Deere - I had chemo at Charing x in 2006. It was after my 2nd d+c when my hcg levels were in the 100,000s. I was in for 3 weeks, whilst they started me on methotrexate. Once started, the chemo was continued at my local surgery and by district nurses, and I got into a routine of chemo and blood tests to check markers. Charing x appointed me a nurse liason (I don't know if they still have the same system) and she was lovely and I could phone her anytime with worries.

If you have any questions I would be more than happy to answer them, either here or pm. I kept a diary of the whole time, which I can pull off the shelf!!

Good luck next wrek, and look after yourself.

MrsJohnDeere Thu 21-Feb-13 19:41:09

Thank you hazey - always interesting to hear about other people's experiences. Wow, your levels were so high! Did you feel unwell before treatment started?

My levels are really pretty low, just not going away on their own (unless they magically have in the last week or so).

I am going mad waiting for Monday. It feels like an eternity. I hate not knowing exactly what will happen to me. They could still send me home if my levels have dropped. I actually do want chemo, perverse as it sounds, so it is all over and dealt with, rather than the stress of wondering what is going on and what the levels are doing every two weeks.

Nerual - all sounds quite positive. Still keeping everything crossed for you.

Nattnothing - I'm really surprised CHX haven't called you in. Doesn't sound right at all.

nerual Mon 25-Feb-13 10:05:16

Good luck for today MrsD, will be thinking of you, let us know how it goes.

artifarti Mon 25-Feb-13 10:45:16

Will be thinking of you today MrsJD. Hope all goes well. x

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