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Find support and share your experiences on our Miscarriage forum.

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Find support and share your experiences on our Miscarriage forum.

Miscarriage/pregnancy loss

Partial molar and molar pregnancy support thread - all welcome!

699 replies

MrsJohnDeere · 28/11/2012 11:06

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.

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Report

nattnothing · 10/02/2013 12:45

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 :)

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 · 10/02/2013 14:02

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.

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MrsJohnDeere · 11/02/2013 20:23

No results, no news.

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Ashoething · 12/02/2013 10:41

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

MrsJohnDeere · 12/02/2013 14:34

Results back. Need chemo. Scared.

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artifarti · 12/02/2013 17:38

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 · 12/02/2013 19:23

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

nerual · 12/02/2013 19:27

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

MrsJohnDeere · 12/02/2013 22:08

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.

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nattnothing · 13/02/2013 12:53

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 · 13/02/2013 13:29

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.

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nattnothing · 13/02/2013 15:22

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 :). Wish there was more we could all do for you...

nerual · 15/02/2013 20:16

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

MrsJohnDeere · 15/02/2013 22:18

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).

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Ashoething · 16/02/2013 17:01

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 · 17/02/2013 18:23

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 · 18/02/2013 18:33

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

MrsJohnDeere · 19/02/2013 16:26

Thank you all for the kind wishes

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?

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nerual · 20/02/2013 12:21

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 · 20/02/2013 16:37

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 · 20/02/2013 19:11

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 · 21/02/2013 19:41

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.

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nerual · 25/02/2013 10:05

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

artifarti · 25/02/2013 10:45

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

MrsJohnDeere · 26/02/2013 12:35

Well, I'm in CHX having chemo. Had a stressful day yesterday. Sat around for about 7/8 hours whilst they decided what to do with me . Chemo was on, then blood came back lower so it was off (they were going to advise a 2nd ERPC instead as all the new growth is contained in one area), then they decided to go for chemo after all. The thinking was that my levels are just going to bounce up and down forever if left to their own devices, so it was better to be proactive.

Everyone here is lovely, which really helps.

Feel fine so far, other than a splitting headache, but that might be related to a lack of fresh air.

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