Recurrent Miscarriage Support Thread 30 - Support for Tests, Treatments and Trying Again

[forestnest]

Support, hugs, a wealth of collective knowledge and lots of hand holding as we try again. This thread moves like lightning so prepare to read fast!

Previous thread: www.mumsnet.com/Talk/miscarriage/2441180-Recurrent-Miscarriage-Support-Thread-29-Support-for-Tests-Treatments-and-Trying-Again

(stats etc to follow)

Good luck paws x

You lovely ladies, I just wanted to post quickly to say I am so so touched by all the kind, supportive things you have said. It really makes such a difference to how I'm feeling. I'm sorry I've not yet got up to speed on all your stories but I promise I will do soon.

I think I'm going to be off work most of next week so hopefully I'll start to rejoin the land of the living (and coherent!) before too long and I can chat to you all properly.

In the my foolishness, before the D&C I thought oh I'll be feeling fine to go back to work on Monday. But I can barely string a sentence together and don't go more than a couple of hours without breaking down in tears, so perhaps Monday is a tad too soon for work. Had the loveliest email from my boss last night saying to take as much time as I need, they'll be led by me etc but 'in the nicest possible way we really hope we won't see you next week because you have far more important things to be focussing on.' V sweet and really made me feel I can just see how I feel next week and take it from there.

paws I'm so sorry I've not yet caught up on your story but I know you were waiting on a call about blood tests - really hope the call brought the news you were hoping for x

My stats:

Me- 34
Dh- 33
Mc#1-Jan 15 - 5.5 weeks. Natural
Mc#2-Feb 15 - 5 weeks. Natural
Mc#3-May 15- 5.5 weeks. Natural
NHS bloods all normal
Treatment plan: try again and best of british...

thanks for the stats update and links march - I wasn't sure about thread etiquette as I'm a relative newbie, hope it was ok for me to start the new thread off.

monten thanks for the info on King's - I'm not expecting great shakes but have a hunch that King's might be a bit more efficient than Lewisham who have been quite slow - I had to chase for my rmc appointment and the results. A friend of mine also went to King's and they had their bloods back in a week compared to 6 weeks for me. Was it you who posted a picture of the grown-up colouring book a few weeks back? I've got one now and am quite into it - I went with felt-tip pens as I like the colour density but the colour leaks onto the other side of the page (also printed) - did you have similar issues? I should probably just accept it and stop being so OCD about a flipping colouring book!

welcome back from holibobs freckle ! We had a 3 month break from ttc while waiting for rmc appt/bloods and it was good not to have ttc/tww on my mind all the time - I even made it back to the gym for the first time in months nearly a year

minnie a holiday (or several!) sounds like a great idea, very much deserved.

missie I'm so sorry to hear the staff were so lacking in empathy - every hospital should have a patient advisory and liaison service (PALS) who be able to advise you on how to make a formal complaint if you do decide to go for that.

BFN for me yesterday on cd25 with frer and the two days before that DH was away and would think I'm mad for testing so early as I've never had a BFP before cd31 so I hid the extra tests in the outside bin before he came back like a proper addict I think I ovulated quite early this cycle and had what I thought might be ib on cd15 (plus the odd boob twinge and disinterest in booze - although it's probably all in my head), hence the early testing. My rmc consultant mentioned progesterone in our appt, but said nothing about it in the results letter - her secretary said she usually would only prescribe prog from BFP, but I don't know for sure if I'd get it so keen to catch any pg early as I think I'd have quite a small window before usual mc danger zone. Waiting until Monday to test again now - nothing I can do about it at the weekend!

Thanks monten!

Bloods back, levels have more than doubled! grew news for now...had some pain earlier so just taking it one day at a time!

Today, I am pregnant!...

missie don't be silly! You take your time to look after 'you', that's all that's important right now hun...plenty of time to catch up on peoples stories...you just rest and do what you need to do. Take time to grieve, don't for one second feel like you should be 'stronger' and 'not cry'
Crying 'is' being brave, as letting out such deep emotion is very hard, but its also very important to face those emotions, as if you pack them away, they will always manifest and come back to bite you in the arse later on! Grief can take months to deal with, so please don't feel like you have a time limit...we'll still all be here to talk to when you're ready, and we'll all listen if you need to vent in the mean time Xxx

paws great news about the bloods. Keeping everything crossed for you.

Missie don't rush back to work. See how you fare this week and take some time for yourself. If you need longer, I'm sure your gp will sign you off. I'm sorry to hear yesterday's experience wasn't very pleasant. Definitely put concerns in writing when you feel stronger. Xx

Missie** i am so sorry that your experience of personal care was shockingly bad, i really wish that was not the case. But please never appologise for a 'me me me' post. I was in the darkest, blackest place in feb/march and the ladies on here were my crutch to be honest
What you have described is, sadly, normal. After my missed miscarrige, when i thought i was 11 weeks, had seen the h.b at 7 weeks (it had died days later) I felt like my heart had been scooped out of my chest. What with the horemone come-down (i was on progesterone) i just could not carry on for about 6 weeks. Even when i wasn't thinking about it my face would just melt into tears. I felt like i couldn't see or be seen by people - difficult in teaching! I took three days off work, which should have been three weeks and found this thread. Nobody on here can make your loss any smaller, but we can hold sentry during your pain, acknowledge the significance of your loss. We are here. We feel what you feel too xxxxxxx

Oh freckle you've made me well up. You've put it so well. How are you doing today? I'm dreading work tomorrow.

And you're right, no one should ever feel the need to apologise for a me me me post, that's precisely what this place is for.

Sorry you had such a crap experience tho missie. Are you in south London too? At Kings the place you go to have your erpc is the day surgery unit, so people there for literally every type of surgery. The first time they were actually very sweet, I had a tfmr and I guess because that is quite rare maybe they were more sympathetic. But mostly, you're right, I just felt like I was on a conveyor belt. I'll never forget the consultant coming round to do the pre-op notes - firstly it was the same consultant who gave us the bad scan news just two days earlier but she didn't recognise me and secondly she barely looked at me and instead used my stomach to rest her clipboard on as she was writing. . It sounds like quite a small thing but it just made me feel like a piece of meat. I would definitely complain, they will never change if they don't know the reality.

With my first two I had two weeks off work, this time I had one. It's a very personal decision, sometimes being back can take your mind off it. But I found I really needed the time to regroup.

forest here's hoping you have a better experience at Kings. I do think the level of actual care is very high (for certain things) due to it being a teaching hospital. Sadly that doesn't always translate into bedside manner.

Yes it was me with the colouring books! I'm a felt tip pen fan too! For exactly the same reason, I like the colour density and the way the ink fills the space I find really relaxing . Mine doesn't bleed through to the other side, I'd find that annoying too. What type of pens are you using? I find water based best. I don't know how I would have got through the last few weeks without colouring in while listening to podcasts. Your mind and hands are occupied and I just find it so therapeutic!

So as for me, I had a BFN this morning after my wtf cycle. Not unexpected , I had zero symptoms but still hurts. So now just want AF to arrive so I can get on with it. My best friend had her scan, she's 6w 5days today. Struggling a bit. I've emailed my old therapist who I went to after my dad died and asked to see him again. I think this is all just getting a bit much for me to handle on my own.

Oh and I forgot my stats:
Me 38 (just ) DH 40
TTC no 1 since April 2013
TFMR 12 wks (Edwards syndrome) Jan '14
MMC 7 wks (baby measured 5) Jun '14
MC 8wks (baby measured 6) 'Aug 15

1 and 2 were chromosomal (T18 and T22 respectively). Both boys . Awaiting karyotyping results for third.

Diagnosis/Treatment plan: errrr.... Bad luck?

Thank you monten freckle paws (and everyone else) for being just so lovely. I can well imagine this group becoming such a crutch for this whole nightmare. My dp is being totally amazing but he's also upset himself of course. And I can't even really describe to him how empty and bereft I am feeling. To be honest I feel quite isolated and alone (hence why this group is so amazing). DP did most of the 'letting people know' text round, and I expect he's had some replies, but I've heard from v few people. Maybe I shouldn't be surprised by that but it really hurts to be honest. I guess people just don't know what to say. But there are a couple of close friends (one in particular) who have been through mcs, admittedly not as many as me, and I'm actually pretty shocked they've not been in touch. People have their reasons I suppose.

Monten yes I'm in South London too. Had the D&C at St George's though. (Was with KCH for previous 3 mcs - never got as far as D&C though....was booked in for the 2nd mc but it all passed naturally the night before. Had my DD at KCH too but we've since moved). Like at KCH the day surgery at George's is separate to EPU so a conveyor belt for all kinds of surgery, but as others have said it should still be possible to apply a little compassion and humanity to each patient based on the reason they're having surgery. I can't believe that pre op consultant you encountered. In such a difficult situation it takes no time at all to clock the human being in front of them and find a few words of comfort. Honestly if one person had said 'I'm so sorry you have to go through this' or even 'We're going to take good care of you' the whole thing would have been just a little less harrowing. And 'a little less harrowing' is something I'd grab any chance of at the moment. Anything that makes me feel a little less alone and just a bit more understood is gold dust. Hence why you ladies are so amazing.

Monten - sorry also to hear about your bfn. I've not yet caught up on the rest of your story but I hope you are getting the support you want from the health professionals in terms of next steps after the mcs.

Re ttc again we've not really spoken about it yet, but at the moment I feel like we really shouldn't until we have some answers from the karotyping and any other tests they'll do. Maybe we'll wait too to see if we can get into the Coventry study. I just don't think I have the strength to just go for it again hoping that somehow the next time things might be different. Especially as we seem to get pg fairly easily...if we ttc again too soon I could find myself going through another mc before very long. But the idea of not ttc again quickly also makes me feel sad....almost like we're accepting we might not ever have another baby. I know that's silly...it's just that we should try and get some information about what's causing this whole hideous nightmare....but emotions (and hormones still too I suppose) are wreaking havoc with my rational head!

Happy Sunday all. I think we're going to try and take a day trip to the seaside today. DD had spent far too much time in front of CBeebies in the last few days.

Thanks so much again for being so amazing ladies. I can't tell you how much it means to hear the v wise words of support and kindness. It's like you know just exactly what I'm going through. Because you do xxxx

Monten** sorry about the bfn, i am also expecting it this month. Today is my due date for mc #3. Friend had baby on monday and other friend delivered over-night (sigh). And i am SHITTING myself about going back to work. Appart from having a classroom next to the one pregnant person i fimd it difficult to be around I'm still waiting for my scan date to see if polyps are causing my spotting and uterine pain. Spoke to nut (union) on phone on friday and school have broken employment law and should have given me an answer to my statutory request for part time hours by the end of May (which wiuld have given me the oportunity to work my 3 months notice whilst looking for another job. I slso heard via the grapevine that our a-c in maths and english grades are down from 95% to 75% (not my class i might add) but we are an 'outstanding' school and i wonder if this will trigger an ofsted inspection. More fear, more pressure. Trapped and scared. That's how i feel.

Pawes** yay on the doubling hcg count!!!!!

Missie* what paws* says above on crying is really true. I held the tears down for three weeks and was all unexploded rage, then fell out with a friend and sobbed like a baby. It was daft, i should have just put on Steel Magnolias or Legends of the fall and got it all out so i could have started to move on!!!!

freckle huge hug for due date today. Horrible days made worse by you having people giving birth. I'm so sorry. Sorry your head has been so shit too. That's just unacceptable to not give you an answer. Are you going to try and pin him down or just apply again? We're waiting for Ofsted too (not been done for over four years now). And I don't want to start all the bloody working till God knows what time all over again.

monten bugger on the bfn. They're always so bloody crap. Dreading starting it all again. Bleeding seems to be slowing here so no doubt we'll be back on the merry-go-round soon. And at your consultant- that's outrageous. Can't believe a 'caring' professional would contemplate doing that!

missie glad everything is over but am so sorry you had such an uncaring experience. All it takes is for someone to say they're sorry you have to be there or they hope you're ok, and it makes all the difference. I would definitely write a letter once you feel strong enough. It makes me realise that, apart from one horrible doctor at mc3, I've been really lucky with how I've been treated. I think someone said (monten ?) that maybe it comes from the consultant leading the team. I've luckily had the same nurse for both medical managements and she was fantastic. In fact I should write a letter about her really, I figure they probably don't get praised enough. Take as long as you need off work- they sound very understanding about it all so take some time for you to feel stronger. I had three weeks last time and really needed it. This time I was on holiday anyway so it amounted to about ten days. It definitely worth focussing on yourself for a bit before you have to face other people.Enjoy your day at the seaside xx

paws glad the bloods are looking good!

forest hope the bfn turns to a bfp over the weekend!

Waves to everyone and hope you're all having a good weekend!

freckle thanks for the good advice about crying. Today was the first time I actually properly cried. And wow did I cry. If I'm honest I also threw a basket of clean folded laundry round the bedroom too. (Not at anyone I hasten to add....just wanted to throw stuff!). Feel so angry at myself, wondering what's wrong with my rubbish body and all that silliness. I know it is silly even to think that but I had to get it out. It probably won't be the last time I cry and get angry but I really do feel much better for it. And hey, another couple of loads in the washing machine is a small price to pay :-)

freckle sorry to hear about your situation at school with you FW request. Sounds like your head is being a total muppet. It's probably already been suggested but have you considered getting advice or advocacy from ACAS? They're supposed to be pretty good in these situations. And the fact that there's such a clear breach of employment law must mean there's a clear route for you to get back up for your case. So sorry you're having to go through it all, and the possibility of Ofsted. Sending you strong vibes x

minnie and others who have suggested it - I reckon I will write a letter to the hospital about my experiences on Friday when I feel a bit stronger. It won't help my immediate situation in terms of getting answers on why I've had 4 mcs and the last one after a healthy 12 week scan, but if it means one person has a slightly better experience than me in future then it will be worth it.

In the short term, my more pressing priority is trying to see my GP. Turns out my discharge letter from Friday doesn't actually refer me to the RMC. It says my GP should do that. But when I called GP on Thursday (after mmc was confirmed) knowing I was likely to want to see her soon, the earliest available appt was Sept 17th. FFS! So in the morning I'm going to ring the surgery to try and talk my way into an emergency appt. I'll go bonkers if I have to wait until the 17th before the GP even sends the referral to the RMC. I also want to know exactly what blood tests my GP had done before I got pg this time (which all came back fine). I keep hearing and reading about people who had recurrent mcs and then discovered fairly straightforward problems like thyroid issues or progesterone deficiency but I've no idea whether they were in the batch of things my GP had me tested for as I was pg again by the time the results came back. So if those things haven't been tested I want to make sure they are ASAP. And I don't want to have to wait 2 weeks even before anything gets initiated. Gggrrr!

Hope everyone has had a lovely Sunday x

Morning ladies. So I'm sat at home dividing my time between twiddling my thumbs and crying. DD at nursery and I miss her so much. But she was thrilled to be going to see all her little friends so I couldn't bring myself to keep her home just to make me feel better.

In positive news I've managed to get an appointment withy GP for this morning. At least means we can hopefully get moving fast with the RMC referral. Just really want to feel like we're doing something proactive.

By the way is it ok if I join the FB group as well? If so do I need to PM someone to be added? Sorry if I've missed instructions on what to do. X

Missie you can pm me and I will add you to the fb group. I just need your email or fb name (with description of profile pic). X

Thanks bumble I'll do that now x

Sitting outside EPU, waiting for a scan, DH stuck and won't make it here on time. I am terrified. What if there's nothing there.

Allthereis - not sure what stage you're at but if there is anything I'm here today, I've just been through scans at EPU I empathise entirely. It didn't end well for us this time but I'm crossing everything for you!! Hope DH can get there soon for support xx

allthereis also sending you hugs and strength....thinking of you. Xx

Good luck allthereis xxx

Forgot to add my stats earlier:

Me and DH - 35
TTC #1 since end of 2012
5 losses -
3 x mcs Sept 2012; Aug 2013; Nov 2013
2 x mmc April 2014; (break from TTC from April to Sept 2014; and Nov 14 to March 2015) Aug 2015

NHS bloods - normal
uNK cell biopsy - normal
Last pg supported with progesterone (Cyclogest)

Plan - awaiting results of blood test for TABLET trial - looks at link between presence of Thyroid antibodies and recurrent pregnancy loss.

Considering referring ourselves to Coventry (despite normal uNK cells) to see if their protocol can help us in any way. If this comes to nothing we're back to trying our luck!! Currently taking a break to recover from ERPC and emotionally draining time!

Missie glad you've made some steps forward with the GP - it absolutely does help to feel like you're doing something practical, and while it may feel like time is standing still, its still all new and time to think about and get more info about what you do next may be a good thing in the end. You might find you know much more than the GP does!

I'm also twiddling my thumbs quite a lot but trying to find constructive (i.e. throwing stuff out and scrubbing stuff) things to do! I'm off work and have decided to use the whole 2-week sick note the hospital gave me. I've never taken time off before and actually the head space is helping, I have a fairly stressful job and when I'm back I'm back so need to be ready! After my ERPC this time I've had quite a bit of cramping and clots to contend with as well (have checked it out with the hospital and it should just be the last of the tissue working its way out - sorry TMI!). I haven't cried much which does worry me...time will tell:(

Monten Paws and everyone who's had a rubbish experience at hospital. Sorry you had to bear that in an already horrible situation - such a shame - I can't believe the consultant rested on your stomach to write what kind of example is that!

I left feedback for my hospital via the NHS choices website www.nhs.uk/Services/hospitals/ReviewsAndRatings - I did it anonymously and it wasn't too much effort, but I have seen the hospital reply and ask people to get in touch so they can investigate if its something concerning.

It really says something isn't right when one hospital can get it spot on and another gets it terribly wrong. It could be do with size or how they're set up but its hard to see how a large hospital can't organise themselves with the right systems and training. For someone less resilient it really could have a traumatising effect - they'll then need more NHS services, it makes no sense! My local hospital has EPAC available 7 days now, they look after ERPC/medical management patients on the gynae ward (miles away from maternity), you have your own room whenever possible, and a staff nurse is assigned to you for the day. They set aside the first surgery slot every day for ERPC so there is minimal risk of delay - it means you have to go to the ward at 7am for the pessaries to be administered but that's okay I think. Then I might have said before, everyone seems briefed on how they should treat the patient (on a personal level I mean). There isn't always a doctor around when you need one, and we had to wait a bit for prescriptions and other things but overall we came away feeling we had been well treated. Oh dear rant over.

Freckle sorry you're having a tough time with work. For what its worth the situation with the Flexible Working request - they absolutely should have considered that and responded to you by now it seems like an unreasonable delay. All I can say is try to remain the reasonable one in this situation with any conversations or emails you send - the union isn't entirely right it used to be the law (written in statute) that there were particular timescales for employers to respond to these requests. That's not the case any more, HOWEVER, the school (or they may use a local authority policy) should have a policy on this and should have adhered to their own policy/procedure. So I would start by having a copy, and reminding them that a) what your request was b) when you requested it c) that you haven't had a response d) that you would like to arrange a time in the next few days/week to meet to discuss it e) what the policy says. You have a right to make the request but they may turn it down if there are objective reasons for this, and they should explain what the reasons are. I would expect there's probably an appeal stage too in the procedure. I might have given away what my job is - I'll try not to get jobsworthy on this thread though ha!

I know what you mean about colleagues with bumps - my colleague (and actually she's a good friend too) has just found out she is expecting her second, which means she'll be going on maternity leave. My fear is having to cover her bloody leave because they won't replace her, which is what happened last time (and it was extremely stressful because I had more work and I was upset it wasn't me!) - I have rehearsed in my head saying to my boss - 'I am not doing that again!' But I have to take my own advice and not appear like I've lost the plot - I'll have to figure out a way to say it.

Bumble I will also PM you about facebook if I can figure it out - fairly new to mumsnet!

Sorry for long post - like I said twiddling thumbs!

There was a heart beat. I can't believe it.

allthereis that's fantastic!! And breathe... Did DH manage to see it too?

paws great news on your bloods! Sounds like your spotting may have been ib given everything else looks ok. Hoping that was the last of it and it is uneventful from now on.

freckle big hugs. How is your first day back going? Sounds like some great advice from hels. I really hope they book their ideas up and you can get pt. hoping your scan is sooner than 5-6 wks too. Is it possible to request to be on cancellation list?

Great news allthereis!

allthereis such lovely news! Hope you can let yourself relax even a little now :-)

Hels, thankyou so much, your knowledge and information is very helpful.

Well school wasn't so scarey today (much worse obstacles to come through the term). But despite grades going down whole school my groups grades were actually good, which is a fab feeling. At least i got something out of dragging myself into work all those weeks i was depressed after mc3 in feb and march! Plus head and head of department are going to try to get me part time (not a promise but apparently head feels shitty about forgetting my request). And my appointment for my scan has come in the post today for september 25th! Thankyou for being there for me girls xxx

freckle no problem at all. Pleased it went well today, often work days I'm dreading turn out that way. Its more the anticipation!! Good news on the appointment :) x