Support and information after multiple miscarriages thread

abis21

Hey Cleo :j

I'm feeling pretty good now and seem to be coping ok. I went thru a bad spell before the normal result and tried to get some counselling through the NHS, but I don't think I need it now (good job with the waiting list they had :rotfl:)

I spoke to Annie my molar nurse in Sheffield, and she said wanted to have a little spell of normal results and then I could go ahead and TTC. She said that the chances of it happening again aren't reduced with time. She said that the reason they said 6 months was because if you had a rise in hormone levels, then it could be a new pregnancy or a molar re-growth. And the scans in the olden days weren't advanced enough to tell the difference. So she said they were in a catch 22 position, as they couldn't treat a new healthy pregnancy with chemo, but obviously they didn't want to wait and have the molar tissue grow even more. Which is why they said to wait 6 months, so that any raise would then indicate molar re-growth if new pregnancy could be ruled out. None of what she said is what I have read up on in the last 3 months and I so wasn't expecting that - but its what I wanted to hear so I am ignoring all the other bits of conflicting information :o:o:o

So I'm NTNP for the next couple of months. I've had 3 normal results now, so I'm quite happy that thats a good 'run' of them :rotfl:

It is a bit scary trying again I must say. And no doubt I will have a major panick when I get a BFP. Am hoping to push for bloods taking early on to indicate HCG levels and an early scan too. One step at a time tho (altho I can't help ut think n plan ahead )

Am glad you got the ball rolling and didn't have to wait another few weeks for your initial appointment. It does seem an awfully long time to wait for the results tho :(

Its a little silly that they made you have your appt in antenatal :mad: I was with Scumthorpe (is has an N not an M - but it makes a naughty word then! :rotfl:) in Lincolnshire, and they were very sensitive. I had a private waiting room and they saw me out the back entrance so I didn't have to go through the waiting room of bumps. That was when I had it confirmed about the mmc tho - so I was very grateful for their sensitivity. Things like that make such a difference to how you feel about it all. I keep thinking I will write a thank you letter to them to let them know I appreciated it. I bet they don't get many thank you's

Hope your ultrasound appointment goes well. I will be thinking of you :A

amus

Thought this may be of interest:

http://www.bbc.co.uk/news/health-19361432

cleofish

hi everyone,
i had my letter through for my ultrasound last week and it said to call for a date and this is usually within 6 weeks but by luck there was a cancellation so i have it tomorrow morning now!:j (if its possible to get excited about an ultrasound!)

I feel glad that i can get the scan over and done with but also a bit scared that they will find something they shouldnt in there but i need to have the scan so im trying not to worry too much about it and just get it done besides im not even sure if they tell me anything tomorrow or if it will get fed back to the consultant in 3 months.

amus- i also saw that about the super fertile womb and i suppose it is a theory, i had a complete molar where the egg is empty but the sperm reproduces double so the egg and pregnancy shouldnt have progressed at all, but it did and the molar bl**dy stayed there for a long time, it would be intereesting to see what comes of the study though, the only problem with a lot of medical studies is the time frame it takes to find anything out its often over many years.

abis21- good luck with the ntnp side whatever happens you will be scared once you have seen that first bfp its only natural but i really hope it works out and the bfp is a true bfp (if you get what i mean). I know from the molar boards there are many ladies that didnt wait the whole 6 months before trying again, its all indivual though but i know they will do an early scan and london or sheffield with stay with you and follow your levels, because i had the chemo it was different- i was told 12 months and i was willing to wait the 12 months because of the drugs i was given in case of anything bad happening afterwards.

With regards to the councelling, london hospital had a dedicated molar counsellor that you could have sessions over the telephone, i suppose the waiting list would be far shorter than the normal counselling route, i didnt take the offer up at the time (im brave i can deal with it head on) but looking back i wished i had, once the physical dust started to settle i could have done with that, if you want the ladies contact give me bell.

how is everything going for you skintchick and lilymay?

skintchick

Bumping on my iPod so I can find this to reply later.

skintchick

Hi all

Sorry I've not been around, to be honest I've been feeling awful and struggling just to get through the days, so I've not been online that much.

Cleo - how did your ultrasound go today? How great that you could get a cancellation, that's fab.

I'm a bit jealous that you are being tested for chromosomes, genetics AND the TORCH screening and hormones too - I do feel a bit short-changed in terms of what tests I'm getting but I have to keep reminding myself that they know what they are doing and each case is different so needs different treatment.



We were only in there 20I agree with you on the percentages. I always think I'm going to end up in the wrong bit and be the exception rather than the rule.

So you get your results in November? It does feel a long time to wait doesn't it. i keep telling myself that the wait is worth it if it means no more miscarriages.

But how awful that you have to go to the antenatal bit! That is so insensitive. I am trying to get my mum who is in the WI to put forward miscarriage treatment as their big campaign for next year because I really feel it is not done well anywhere in the NHS.


ABis - how is NTNP going? Do you usually take a few cycles to get pregnant? Or is it quick? Hope it happens for you really quickly and you can get early scans and support.

amus wrote: »

Thought this may be of interest:

http://www.bbc.co.uk/news/health-19361432

I saw this article in my mum's newspaper (Telegraph) this weekend. I'm not sure I'd describe it as super-fertile though - it's more not at all discriminating isn't it?! I'd rather my womb only accepted decent embryos personally, it would save all the heartache. I know they're trying to put a positive spin on it but I don't think you can be called super-fertile if you don;t actually get lives ones, can you? Maybe I'm just being oversensitive. I find it a bit patronising and insensitive to be called super-fertile when five of my six children died before being born.

Anyway, time to update on me. I have more blood to give on Sept 5 (next week) but in the meantime I've had a nightmare chasing St MAry's about my fibroid op. It turned out the consultant hadn;t put my paperwork through to the nurse practitioner and that, coupled with the fact they hardly ever answer the phone and take literally days to return messages, meant I was left having no idea what was going on for well over a week of frantic chasing.

However, it is now sorted and I go for my pre-op assessment this Friday, and I am booked for my op on October 11. It would have been mid September but I'm going on holiday.

On the day of the op I have to be in central London for 7.30am!! :eek: I'll have to be on the 6am train to achieve that. Yuck. It is also the day DD starts pre-school which I'm gutted about so trying to change when she starts so I don't miss her first day. I really want to take her and fetch her if I can.

I have had some counselling too. I'm on the waiting list for NHS counselling but the wait is 14 weeks so I've also contacted a charity and had an initial chat with them and will start properly in October after my holiday and op. I really need it as I've been a bit suicidal (can you be a 'bit' suicidal?) and have self-harmed a bit. OH seems to be in denial of how I'm feeling and won;t talk to me about it at all, which isn;t helping. Not sure whether to confornt him about it or just bottle it all up until I explode at some future date. :cool:

How is everyone else doing? We seem to be quite a small select group but I'm finding the support really helpful, thanks to you all for sharing and posting.

abis21

Hi Ladies,

Cleofish - hope all was well at the scan and hope they gave you some indication of what they found there and then. I hate waiting - its so frustrating.

Annie at Sheffield was a Nurse Counsellor, and I spoke to her weekly about everything, so I suppose I did have some counselling of sorts. I was usually on the phone for 15-20 minutes as she always asked how I was coping etc and got me chatting. She said I could go in and see her, but it would have been quite hard with public transport and work/DD etc, so thats why I said I would prefer local counselling through the NHS. After 2 poorly written letters from them (which were insensitive I thought and had I been depressed when reading them it would not have done anything at all for me but made me feel more of a failure. As it happened they came once the fog had lifted and I was feeling more positive). I haven't persued it any further, but I do use these boards and the molar boards if I am struggling with anything.

Skint - big big big and huger hugs for you. We're here for you. I think you can feel a bit suicidal yes. I felt at times like I didn't know how I could cope and carry on. Having DD did help a lot to be honest, as some days you did just have to crack on with things and take her to school or sort tea out when I wouldn't have bothered eating. And also having DD meant that I never could have done anything bad to myself as she doesn't deserve anything like that.

Depression is such a black deep hole and when you are in it, you feel like you will never surface and never be happy again. When you are out of it, you don't understand how you could have ever been so low. Its hard

Glad you got your op sorted for your fibroid. Its such a massive PITA that you have to chase so hard for things- people should just do their jobs right! Altho :eek: for having to get up at that time for an appt. I bet they don't even see you first thing either. For my ERPC I had to be in for 7.30 I think, and the op was around 3pm and I was on nil by mouth from the night before, still suffering very badly from morning sickness (molar pregnancies make sickness worse than usual) and eating would have helped to relieve the sickness. Tis also a pain, but I can see there point that there were other people more urgent than me

Hope you manage to get your DD's pre-school start day changed. Am sure they will be accommodating under the circumstances.

Hope you can manage to get sorted with counselling. I think it will help to try and talk to your OH. My DH is lovely, but doesn't realise how important he is sometimes (to me) so he would distance himself at the beginning which I found infuriating and very upsetting. It did take a few tears and shouting at him (oopsies) to get him to realise that he was the person I needed most. Even if he was to just sit next to me, it was a help. He didn't need to say anything or do anything special. In the end, its brought us closer together, but I realise that after multiple times it must be so much harder. Hope I am not sounding insensitive here - I do mean well - am just not so good with words sometimes.

Despite me not being very good with words, if you would like to chat to me at any time then please do. You can PM me, or I will give you my email or facebook details. I don't like to think of you suffering. Theres a few of the TTC ladies (you, cleofish and some others too) that I am very fond of and if I could help you out with anything then I would like to. I do think of you all and hope you are all getting on ok.

As for me, its our first month NTNP and its going ok. Nice and relaxed BDing when we feel like it. I have no idea when or if I have ov'd. I had irregular cycles before so not sure when I am due on. I caught on immediately after coming off the pill with DD (different partner) and this time it took me 6 months after coming off the pill. I haven't been back on the pill in the meantime, so hoping it might be sooner than 6 months, but trying to stay relaxed about it all and take it as it comes. Being overly optimistic (as I am about most things in life ) I kind of think it will probably take a couple of months. But we shall see. I think the panic will come after the BFP because the naivity has gone now and I know it can hurt so much. And if I get another molar pregnancy then I will be soooooo mad with myself for not waiting to TTC. Trying my very best to cross bridges when I come to them tho.

cozza123

Hi everyone
what can I say not doing very well at the moment guess i come on here because I feel i can't talk to anyone else even after all the tests and no answers and the last mc in january im still angry and upset with the world. for those who dont know me im 28 yrs 3 mcs no children.

crying at adverts on tv that new baby wash one kills me every time and getting angry with some woman at work who's become a grandmother bringing in little knitted boots not good think i'm depressed also think I'm putting pressure on OH to ttc too that nothings happening in that department, even considered putting crushed up little blue pill in his cuppa lol

Then thought finally i need to change decided to clear everything away fresh start as when i was first pg i bought stuff then in hope kept it and now finally decided to get rid of it also told OH won't ttc for while partly in the hope that abit of reverse psychology may happen with him as he seems disinterested


mad i know:o

Kimberley82

I am lucky in that we have two children but have had 11 miscarriages

only had tests ones and the doctors didnt care, recently had another even after my husband had a vasectomy there is just not enough help out there

cozza123

i guess its one of those things that you dont realise until your in the situation like how many people have mcs and lack of support there is out there

janninew

Hi Ladies,

No personal experience to offer you but a close friend of mine has had 18 miscarriages and went on to have a little girl. She has been through so much and I know had many tests and spent a lot of time in hospitals. I'm not sure of all the details, but when I see her tomorrow I'm going to mention this web-site and see if she'll join up and post on this thread. She is a lovely girl and really seems to know a lot about miscarriages and the various tests and treatments that are offered. I think she could be a help to some on here, hope that's ok.
xx