Recurrent miscarriage in Northern Ireland

(14 Posts)
Mamakate75 Tue 08-Apr-14 22:54:46

Hello!

I'm not sure whether a thread already exists for ladies who suffer from recurrent miscarriage in Northern Ireland but thought it would be useful to start a thread so we can discuss treatments/support in NI. I have had five miscarriages, three at 12 weeks, one at 10 weeks and another at 6 weeks. I am under the excellent care of Dr David Hunter in Belfast and am preparing to give it one more go.

I am also very concerned about the lack of 'emotional' support for ladies in NI who endure recurrent miscarriage and would like to see access to hospital based counselling made available to us and/or a support group.
If you have any views on these issues, I'd love to hear from you.

Wishing you luck in your journeys. Always here to support anyone who needs it.

Cx

bakingtins Wed 09-Apr-14 07:49:55

Hi mamakate I'm not in NI, just wanted to say you are v welcome on the general RMC thread too. I think we all face the same issues of lack of emotional support. I don't know anyone IRL who has suffered multiple losses, Mumsnet has been a lifeline.

jbee1979 Wed 09-Apr-14 08:27:38

Hi Mamakate, I'm in NI and I had a miscarriage at the start of March - first pregnancy first miscarriage - so I can't imagine what you're going through, but I'm glad the hospital is looking after you.

I was given leaflets about The Miscarriage Association NI but they're not a great deal of help since both the telephone numbers on the last page aren't valid.

I agree, little support. It took me a couple of days to get the courage to speak to someone, and when I was desperate, no one was there. I was really emotional and suffering serious anxiety following ERPC - weird symptoms.

In desperation I phoned Antrim Hospital - they were busy - someone would phone me back... I phoned the English Miscarriage Association - they told me to join their online forum. At my wits end I phoned the Tommy's helpline - the number was in my first Bounty Pack and the midwife was called Jules and she was so soothing and informative - she was able to ease my immediate concerns and tell me I was normal.

When I went back to work, too soon, I cried to a customer and she told me about Mumsnet and I've been lurking about ever since!!

Although the hospital were really good, and DH is fantastic, my family and friends haven't experienced miscarriage and certainly not repeat ones like you, there's def a gap in the care market in NI.

Homelander Wed 09-Apr-14 08:32:36

Hi Mamakate,

Another person with recurrent losses here. I have family in NI which made me look at your post. Thought I would bump your thread.

Totally agree with you and bakingtins about the lack of emotional support. Although my hospital had a bereavement midwife who was really good support for the first couple of weeks if I needed to speak to anyone, to be honest at that point I was still in shock really and it was still sinking in what had happened. It's really the weeks after that I think that support would be helpful.

Wishing you much luck on your journey. x

Mamakate75 Wed 09-Apr-14 22:22:43

Thank you so much for your comments and kind words ladies. Yes, it is true, miscarriage hurts no matter where you live or where you are from.

I am pushing for change because there is absolutely no support in Northern Ireland (other than what my magnificent Consultant gives me) and this makes miscarriage and recurrent miscarriage a very lonely experience. It is ridulcous Jbee1979 that the hospital are handing out information which is incorrect; the Miscarriage Association of NI stopped holding support meetings well over a year ago now!! And to be directed to an online forum, while of some use, is perhaps not what everyone wants - some people like human interaction!I have emailed other girls who suffer from RMC and vice versa and we provide support that way - for now. I'd be happy to do the same for you jbee1979 (?) especially if you are still struggling a bit with your loss.

As I said I have lost five babies in a row since Oct 2010 but I knew I was pregnant from end of Aug 2010...it's been long, very trying and emotionally exhausting. And talking of 'exhausting' I'll have to go now as I can barely keep the eyes open. Will post a better response later..

calibee Thu 17-Apr-14 08:32:47

I just wanted to post and say I too am in NI. I suffered a mmc whilst living in England and most of my support came from other Mumsnet users...I dont think I could have done it alone as DH was away, so am forever greatful.
I am now with the Royal Fertility Clinic at the RVH ...pursuing IUI.

LALaker Mon 19-May-14 14:35:29

Hi MamaKate- I totally agree with you and thank you so much for posting this. I live in NI and have had 7 mcs all within the last 3 years and as you say the support is pretty much non-existant and a shame the meetings have stopped at the Miscarriage Assoc in NI - I managed to get to one meeting before they finished. I'd be happy to chat or meet up with people in NI for support and am currently trying to get a website together just with some info on possible tests and treatment although Im no expert I find the forums have been lifesavers. I'll post the link when I get it finished. Wishing you all every success in 2014.
xxxx

OhTheDrama Mon 19-May-14 19:07:59

I had a surgical management of miscarriage last week at the Royal in Belfast, I was 12 weeks. I'm feeling really numb and shocked at the moment, I have had several very early miscarriages but I really thought I was safe this time. The EPAU at the Royal were brilliant, I have to say but the aftercare just seems non-existent, no follow up appt or offer of counselling.

It's not helped that people really don't know what to say so just avoid having to speak to you, I feel so utterly alone right now. I went back to work today and all my colleagues basically ignored me all day. The only person who asked how I was and seemed genuinely interested was male. If I don't feel bad enough, I'm now a social outcast. I was given some leaflets about the Miscarriage Association but got no answer when I rang, are they not active anymore? There really should be a support group, it's such a shame that it's not running anymore as I'm really struggling and feel like I need real-life support, although MN has been fab.

Mamakate75 Tue 20-May-14 00:20:21

Hi there, thanks for your message. Whereabouts are you in NI? I'm sorry for your losses. Have you been tested and are you under consultant care? If so, which hospital? I ask only because I know the Ulster hospital have a bereavement midwife.

I have been losing babies for 4 years, been tested to hell and back and am still'unexplained'. It's very, very tough and exceptionally lonely at times.

I am currently about to start work with the PCC to look at care and treatment in miscarriage. My focus will be on the Belfast Trust and specifically the complete lack of emotional support for women who suffer recurrent miscarriage. That said, my Consultant has been beyond amazing and I wouldn'tbe clinging on to my sanity without him.

If you are near Belfast, or even not, I'd be happy to meet if you want to chat over coffee or I can chat via e mail. I know how lonely it is and how only women who have been through the same thing really understand how you feel.

Are you planning to ttc again?If you are, best of luck. I'm about to embark on the journey again. Don't ever think I will get my baby though!

Best wishes

Catherine

LALaker Tue 20-May-14 11:08:05

Hi MamaKate thnaks for responding. Im in Belfast and would be delighted to meet - please PM me anytime and anyone else. Its just like Ohthedrama says, you feel so, so alone and I feel like the majority of people do not understand - especially when loss after loss occurs and its difficult that its such a stigmatised and traumatic thing that we all dont really talk about. I have been to London - both Dr Shehata and Prof Regan at St Marys and have been given a cause I have coeliacs disease and Hughes Syndrome (APAS) as well as a few other raised tests. I also did the greek Serum infection in the womb tests and a whole stack of other tests too. In fact most of the care I have got has been outside of the NHS- the APA test on the NHS here was negative here - wheras at St marys with their special equiptment it was positive and means 2 aspiring and clexane. They also missed that i had an arcuate uterus with the hysteroscopies here in NI, but in london they found it and fixed it. im just not sure the care and expertise is all here and it is only when women come together to share ideas like on mumsnet that we all learn. xoxoxo

Cha2012 Mon 30-Jun-14 20:11:30

hi everyone, I have just turned 40. I had normal, healthy pregnancy, conceived without trying and my daughter was born in 2012 and will now be 2 in July 14. Since then I had a blighted ovum in January 14. Discovered at 7 wks, but scan at epc clinic rvh only showed a sac measuring 4 wks. I then found out I was pregnant in May 14, had an early scan at 7w, 4 days, there was a fetal heartbeat but was only measuring 6w 3 days, I then had a rescan at 9w 3 days but no fetal heart beat and was only measuring 7w 3 says, I have had a silent ( missed miscarriage). I will be having d&c tomorrow. I have been seeing a private consultant since jan 14 as I noticed my periods had started to shorten and I was spotting just before I started my period. He recommended progesterone. After taking progesterone my cycle did lengthen but I was still spotting just before I finished the progesterone, (day 30). The consultant then suggested I stop progesterone and try clomid as I may not have been ovulating properly. I started clomid in apr 14 and first round I got pregnant but I have just now lost the baby.
I just don't know where to go from here. I am due to see the consultant for a review after my d&c and to discuss a plan as I really want to try for a baby no2. I know my age is a big factor as the all the epu rvh clinic could say it is a lottery with your egg quality at the stage and just bad luck!

The other issue I have I went for a smear in jan 2013 and it was normal and I was advised to repeat in 3 years(2016) but after my blighted ovum in jan 14 I asked my private consultant to carry out a smear which took place 2 weeks after my first mc. The result came back as borderline changes and to repeat in 6 months which would be June 14 but I was reassured that this was normal by my consultant and not to worry. I even spoke with the Epu clinic at rvh and they said my consultant should not have carried out my smear so soon after the miscarriage should have been at least 3 month after the mc. I asked my consultant could this have caused my most recent missed miscarriage and I was advised no but I was advised to have a repeat smear after this mc. I really want to try for a second child and I'm really worried I running out of time. Any advice or suggested tests would be greatly appreciated as the aftercare for miscarriage in ni is non existent. I would like to know what tests I can ask my consultant and GP to carry out since I have had a second miscarriage but my surgery have not been helpful as said you need to have experienced 3 mc before they can investigate. Has anyone else had a Similar experience and has gone on to have a second successful pregnancy. I just don't want my daughter to be an only child!
Thanks much appreciated.

Mamakate75 Tue 01-Jul-14 23:33:14

Sent you a private message Cha2012

MamaJ1978 Sat 26-Jul-14 05:30:18

I also live in Belfast and just wanted to briefly share my experience and give hope to those in despair. I had a blighted ovum in 2007 but then conceived a few months later and carried my daughter to term without complication (aged 30). She is now almost 6. I did not think there was any issue and that the blighted ovum was bad luck so waited until she was 2 to try for a second child. This is when my recurrent mc problems began and to this day are unexplained. The good news is I now have my newborn daughter safe in my arms after a long wait. In brief summary, I lost 3 consecutive pregnancies in 2011/12 none progressing beyond 9 weeks (but prob stopped growing at 6/7 weeks .The 4th mc was a complete molar pregnancy (another long story) They don't tend to scan very early until you have a few mcs. The second mc after blighted ovum was spontaneous at 10 weeks so couldn't be tested. For the 3rd mc there was a feint hb at 8 weeks which had stopped by 10 weeks (I saw 352 lisburn rd for early scan) so had erpc in rvh. I was offered referral for tests but declined preferring to try 1 more time. A few mos later I conceived again and saw 352 again for an early scan (they never charged me anything as miscarriages) and this time scan showed a collapsing sac at 9 weeks. I was referred to the early pregnancy clinic at RVH for this mc and also to David Hunter for testing. The royal tried to talk me out of d and c and just let things come away naturally but I found that prospect too distressing so demanded an erpc. It's lucky I did as the results showed a molar pregnancy (potentially cancerous placental tumour) so I has to be referred to charing cross hospital in London for monitoring. After a couple of months my hcg levels rose which indicated tumour cells were present so I had to travel to charing X hospital in London for treatment. I needed 16 injections of methotrexate chemotherapy to get rid of the tumour and will be monitored for life to ensure it doesn't return. I then had to wait 1 year post chemo to conceive again which was devastating. So 2012/13 was spent having investigations such as hysteroscopy, testing DH and my bloods etc. All of these tests were normal and no clotting disorders detected. So David Hunter recommended aspirin 75mg to be taken daily a few mos before conception next try and then 40mg clexane when intrauterine preg confirmed. So I conceived again first try after 1year post chemo. I saw early preg rvh at 5 1/2 weeks but no fetal hb but fetal pole looked ok so clexane 40mg daily was started. After 1 week on clexane I had another scan and sac had grown but still no hb. A scan was booked for 7 1/2 weeks but I spontaneously lost that pregnancy 3 days later at 7 weeks, the earliest I had ever lost. I saw dr hunter again who had no real answers and advised me to attend Coventry (prof Quenby/prof brosens) for endometrial biopsy for nk cell testing. It is not available on nhs but costs £360 plus travel and needs 2 be timed with when u ovulate. Best £500 I have ever spent. Had biopsy in October 2013. They phoned me with results 1 week later and my nk cells were normal but they advised me to stop aspirin ASAP as it stops implantation and instead prescribed me 400mg progesterone pessaries twice daily from day 21 of menstrual cycle to continue for 1 week. If pregnant after that to continue progesterone until week 12 . They also advised 20mg clexane injection daily until 12 weeks. So I had conceived my daughter with that cycle and saw dr hunter from 6 - 12 weeks for early scans and I started clexane at 6 weeks. I stopped progesterone in week 13 but continued the 20mg clexane until the day before I had my daughter as I was afraid to stop it in case I lost this pg as it does no harm. So my daughter is 3 days old and perfect. Belfast still swears by Aspirin but it didn't work for me. They will also only usually give progesterone after pregnancy confirmed which could be too late. There really should be standard guidelines as national treatment of recurrent mc is variable. I just wanted to share my experience in the hope it helps someone else in a similar situation x I am now 36 yrs old and glad that long journey is over.

Pinklillypops Wed 20-Aug-14 21:54:15

Hello everyone, I've just joined up as yesterday I was told my 14 week pregnancy had ended at 9 weeks and the baby's heart had stopped. I've to go to BELFAST royal early pregnancy unit tomorrow. Does anyone know if I take the tablets or surgery do I have to stay in hospital for long as I've to arrange a babysitter for my two children

Thank u

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