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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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Ashoething · 26/02/2013 12:48

Hi mrjohndeere-Am glad to hear that you are getting the treatment you need. I was also on the verge on a second erpc when they decided on treatment-though my hcg was in the hundreds of thousands! Hopefully your levels will start going down quickly now.

Are you on the low dose chemo?-means no hair loss which is obviously a plus! I found all the doctors and nurses very kind-I had prof newlands-who have you got?

I hope the treatment continues to go smoothly and that you are back to full strength soonest. Continuing to wish you all the very best! x

MrsJohnDeere · 26/02/2013 13:24

Yes, low dose chemo. I have Prof Seckl who seems lovely. He's the one who does the video clip Q&A on the CHX molar website.

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hazeyjane · 26/02/2013 13:27

Glad to hear they are looking after you.

Sounds like a good decision to go straight to chemo, I wish they had done that with me, rather than a 2nd erpc, then me collapsing at work, and having to be rushed to ChX in the night, with hcg levels close to 500,000.

I found at the beginning it took a while for them to get the level of chemo right, and I had terrible mouth ulcers, let them know is you are suffering anything that could be a side effect.

I was under Prof Seckl. Look after yourself. x

hazeyjane · 26/02/2013 13:28

crossposted! Glad you have him, he was great, and really helpful.

mistlethrush · 26/02/2013 13:30

nattnothing - just in case it helps, I was haemoraging on a fairly regular basis before I got diagnosed. 2nd Erpc didn't sort it out and I ended up being admitted as an emergency in local hospital on the Friday (rather excessive as I'd been walking the dog earlier in the day) and carted off to another one by ambulance on the Saturday (again, excessive as I could have gone in the car with DH) where they did nothing with me until Monday when I had all the scans, tests and started chemo....

Ashoething · 26/02/2013 13:36

My friend had prof sekyl and he seemed lovely-you are in very good hands.

nerual · 26/02/2013 14:16

very glad to hear you are being well looked after mrsD.

nattnothing · 26/02/2013 19:38

Mrs JD, so glad you are good hands and are now well and truely on the road to recovery! Look after yourself and keep us posted - I will be thinking of you x x

Mistlethrush - thanks for your info, how long were you haemorrhaging for post 1st DC - did they find out what was causing it? What were your levels like during this time? i think I may also need treatment as my situation is not getting any better! Are you all finished your treatment?

mistlethrush · 26/02/2013 20:19

DS is nearly 8 - and he was after the mp, treatment and a year of not being allowed to ttc - so it was a long time ago for me now...

I had an initial erpc - but it was a bank hol weekend, on the way home from hols - and my Dr / hospital never got the feedback from the hosp that anything needed to be followed up. So I was back and forwards to the Dr over a period of 3 months with them saying 'it will sort itself out, its still early days' knowing things were not right. I ended up starting another bleed just as I was waiting to see the Dr - who was a locum so doing everything by the book, examined me, got me a scan the following morning - after which I was kept in and had another erpc as an emergency that afternoon. It was hoped that that was going to sort things out - but I had another bleed 2 wks later which resulted in the Friday admission and being carted off elsewhere.

But DS was after the mp. Unfortunately I had 2 mc after DS - both overshadowed by mp fears as my levels too AGES to drop (3 months) but they did eventually. However, it was too much to carry on with and we've stuck at one rather than continuing to ttc.

MrsJohnDeere · 27/02/2013 13:22

Some really scary stories..

Some good news here. I might be allowed home on Friday, rather than Sunday. Not going to count my chickens quite yet though just in case. All depends on whether they can find someone to give me the final injection of this cycle at home (and no bad reactions in the next couple of days).

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Ashoething · 27/02/2013 16:55

I hope you are able to get home-as nice as the people at charing cross are I found the time dragged. Is cafe rouge still over the road? I was allowed to go there a couple of times when I had visitors and also with a couple of fellow patients for dinner-it was great to get out for a while! Also had a wee party for bonfire night in the tv room-anything to pass the time!

Do you have plenty of visitors?-I wish I wasnt so far away or I would have popped in! All the best!

MrsJohnDeere · 27/02/2013 17:10

They won't let me leave the premises! In fact, they wouldn't even let me go down to Costa Coffee on my own in case I suddenly collapse or haemorrhage, apparently! After a couple of solitary days I had two visitors today which has been lovely, and they accompanied me downstairs. Got another visitor tomorrow too. Friends and family are being fabulous. Today has gone really quickly, which is great.

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mistlethrush · 27/02/2013 17:52

They were somewhat more robust in Sheffield - even though Leeds had treated me as though I was about to expire with all the immediate admission and ambulance down there the next day. They had (have?) a lovely conservatory where you could sit in the sun - although I tended to hang out in the TV room (which had lots of people in mainly on day visits). I only eventually persuaded them that I should be able to take 3 out of the 4 injections home with me to get the Dr to give me rather than travel in each time (the first day of each is understandable of course). On a couple of the 1st days I wandered down into the town and caught the bus back up too....

hazeyjane · 27/02/2013 18:37

I couldn't leave either, Mrs JD, and I was there for 3 weeks! Have you got a private room? I was on the ward, because they had a VIP patient for the first week I was there, but then I was very lucky to be given a private room. Dh travelled up and down from Somerset and stayed with friends for a lot of the time.

I had to have the injections every other day, but after the 3 weeks I was able to have them done by the district nurse at home. Having the chemo couriered to me from London every 2 weeks.

MrsJohnDeere · 27/02/2013 18:47

Yes, I've got a private room which is nice, with an amazing view over London.

They're going to give me 2 weeks worth of injections etc to take home, and then I'll collect the next 3 batches when I come back for the 6 week check up.

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mistlethrush · 28/02/2013 11:53

Gosh, sounds as though things have changed since I had this as they wouldn't consider sending home any more than one course at a time and wanted to see me before each one started....

I was only in 9 days but managed to lose my voice for the entire stay (prof used to come along on wards and then have a giggle at my lack of voice).

Ashoething · 28/02/2013 16:30

I was in for nearly 3 weeks intially but was lucky in that they let my mum join me-she stayed in nearby nurses accomodation-I bet the nhs budget doesnt allow for that now!!

After 2 trips back down to cx I instisted on having all further treatment at my local hospital-cx were great but I just couldnt cope with the flying after chemo-it was a horrendous and I am a bad flier anyway!!

Hope all still going well-keep posting and keep getting better!!

MrsJohnDeere · 28/02/2013 17:24

Yes, before I came they sent me a leaflet about studio apartments that relatives could stay in (£50/night iirc) that are part of the hospital. I'm on my own here though (apart from a few visitors) as dh has to stay at home to look after the Dcs. He tells me that the house looks like a bombsite now, so I'm not sure I want to go home and see for myself quite yet.

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MrsJohnDeere · 01/03/2013 10:52

Allowed home this afternoon - yay! Got to come back on Sunday to have my 4th injection because they can't arrange anything locally at short notice.

I have to say, the mole staff - in fact all the staff here generally - are fabulous. So lovely, and friendly and warm. If anyone does have to come here you will be in very good hands.

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nerual · 01/03/2013 12:31

great news mrsd!!

Ashoething · 01/03/2013 18:20

I hope that you are now safely back at home mrsd-I bet your family will be so happy. Continued good wishes.

nearlyreadytopop · 02/03/2013 21:17

Tentatively come over to this thread as suggested by Mrs JD. (who is hopefully resting and being spoiled at home?)
5 weeks after mmc my HCG levels have not returned to normal. Finally got seen by consultant on Thurs who after scanning me thinks my pregnancy was partial molar. I am booked for an ERPC on Monday morning. I'm getting more and more worked up about it as the consultant said that it must be done by someone experienced due to the nature of the tissue and that its highly vascularised. Really just looking for reasurrance that it will be ok.

MrsJohnDeere · 03/03/2013 09:18

Hello NRTP

Off to hospital for another injection this morning. Soooo tired. No pain but feel really out of sorts. Like the after effects of flu.

Back properly later.

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MrsJohnDeere · 03/03/2013 21:42

I could really do with some advice from those who have been through this and come out the other side. How much bleeding is normal? I'm confused because Prof S clearly said if you start bleeding lots then either phone CXH (if during Mon 9-5 hours) and they might arrange an ambulance or go straight to the local A&E and get them to call the oncologist on call at CXH. At the same time the nurses said some bleeding/spotting is normal and to be expected. I'm somewhere between the two. It started up this evening and is def heavier than spotting but hardly gushing out.

I feel better in myself than yesterday and Friday (when I felt like I'd been hit by a bus). Maybe I did too much and should rest more.

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hazeyjane · 04/03/2013 08:55

Mrs JD, I was told that if i was soaking a sanitary pad in a certain amount of time (this was 10 years ago so i may have not remembered right but i think it was 20 mins) also if i was passing anything clotty, to go to the hospital to get checked out. As I say I was in for 3 weeks, and in that time, I was barely allowed to walk around the ward, because of the bleeding. I ended up bleeding for nearly 9 months, but that was mostly a normal sort of period bleed. I think in the early days, it is probably a really good idea to take it as easy as possible. I would say if you have any concerns at all, then to call the Chx team and ask, they may just say to get checked out locally. Hope everything is ok. x

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