Recurrent Miscarriage Support Thread 24 - tests, treatment, trying again.

[Brummiegirl15]

New thread for us if it's worked on phone! Will paste stats

Hey Diddly that's the one I'm struggling with. Get garbled sound then it stops completely after 13 seconds. Is it working for you? If so I'll go try on another device.

Hi all. sorry, I have got a few pages behind and now have no hope of catching up! Just wanted to comment on Prof Q talking about testing after a first MC as it's something we discussed a lot on a thread ages ago. I think it was advocated in the book "Coming to term" ? I think genetic testing ought to be made available (offered privately if the NHS can't afford to fund it) to every MC woman. Those with a genetic cause would be reassured that they have good chances of success in a future pregnancy, those losing normal embryos could be offered testing without having to go through it twice more.

longest thinking of you. I know the anxiety never goes away, but you will be meeting your baby very soon.

Bootles I had a booking in appointment for my first pg, but didn't get a pack. Quite glad I didn't!

Jady/March/Sasha There have been three programmes on radio 4 recently involving ivf, two just sections on women's hour, one a documentary about knowing when to stop. Very depressing. Some couples gave up, others ended up divorcing due to the pressure of ivf. Kept reminding you that 75% of women going through Ivf will never have a baby. I wish the general public would bear that in mind (people still think that ivf will get you a baby, whilst the chances of getting pg naturally if you're able to are far higher) but it didn't help me to listen to it, ended up having nightmares where I never did get my rainbow baby. Bloody depressing!

longest those are tragic stories but they are incredibly unlucky (understatement of the century), the odds are massively in your favour now .

jady it worked fine for me on my tablet

Thanks for the link diddly
Here is a link to the other interview with Siobhan Quenby about improving mc care (2011)

www.bbc.co.uk/programmes/b015n3bc#playt=0h01m08s

Bootles and Longest big hugs and not long to go now. Longest, it really isn't that long for you! Hope sweep goes ok - Shortest will be here soon.

Really struggling with my nausea today. Seems to have ramped up although I know I shouldn't complain.

Also starting to feel the side effects of the 400mg cyclogest. It's given me a really really bad stomach today. 3 times in an hour I had to go to the loo and it was not good.

Plus can also feel it burning me a bit as well. Am hoping it's a one off but can't have a bad stomach like this every day.

I might have to consider front ways for day time and continue back way for night.

But I know using it from the front isn't great either. Anybody got any advice about the side effects?

Hey.

Loopy - I'm sorry to hear your news. Big hugs.

Sasha - welcome back. Sorry the medical appointment didn't come up with anything new - though a positive reframe is that at least that suggests the plan in place is a robust one. Hope all the rest of the info has felt helpful too. How do you feel about trying this month? My gut response when reading your post was 'go for it' but obviously it's a personal decision.

Brummie - sorry you feel shitty and please complain all you like! Same goes for you Longest. I hate the idea that because we've struggled we're not allowed to complain and are supposed to be extra grateful even when dealing with the difficulties. My friend has just had her first baby after three failed rounds of IVF. She mentioned a lack of sleep and her sister turned round and said - "well isn't this what you wanted". Grrrr arghhhh. Unbelievable. I'm so happy for her - and I figured you guys would be too so thought I'd share - as well as stick in the little rant about having to be grateful!

Longest - such sad stories. Hang in there lovey - nearly there. I love your plans for DD's summer. Sort of wish I had her holiday plans ahead of me!

MrsD - sorry to hear you're stressed. Early pregnancy is always awful but particularly so during the danger period. Hope everything settles down a bit over the next week or so.

Thanks for the link Cheeky et al - only listened to the one about miscarriage in general. It's nice hearing it spoken about on mainstream media. That woman's story made me a bit teary - for all my bad luck I've never been put on a labour ward.

I liked the 70% of those experiencing RMC will have a baby in a year stat, though did glare suspiciously at the computer when she said it. I wonder if our thread supports that stat - it kinda feels like it does at the moment, although we have had sad losses recently too.

Sorry one of the podcasts upset you Barking. I have to say that I had no idea the stat for success in ivf was so low, despite having friends going through it. I confess I'd imagined it to be much higher. Precisely why these things should be in the media. Hugs to you though.

Bootles - really feel for you. I have times like that too - not necessarily post-mc/during pregnancy either. I once cried over a pair of lost boots and that was just pmt.

I've had good news today. Tests from a Charing Cross came back negative so just need one more set on 24th June then, assuming all is well, I'll be discharged and allowed to TTC. That falls just before I'm due to ovulate for first time after Cov so there's likely to be no further hold ups. Does a little dance. Ttc again at end of June! eta of next mc early-sept

Hey.

Loopy - I'm sorry to hear your news. Big hugs.

Sasha - welcome back. Sorry the medical appointment didn't come up with anything new - though a positive reframe is that at least that suggests the plan in place is a robust one. Hope all the rest of the info has felt helpful too. How do you feel about trying this month? My gut response when reading your post was 'go for it' but obviously it's a personal decision.

Brummie - sorry you feel shitty and please complain all you like! Same goes for you Longest. I hate the idea that because we've struggled we're not allowed to complain and are supposed to be extra grateful even when dealing with the difficulties. My friend has just had her first baby after three failed rounds of IVF. She mentioned a lack of sleep and her sister turned round and said - "well isn't this what you wanted". Grrrr arghhhh. Unbelievable. I'm so happy for her - and I figured you guys would be too so thought I'd share - as well as stick in the little rant about having to be grateful!

Longest - such sad stories. Hang in there lovey - nearly there. I love your plans for DD's summer. Sort of wish I had her holiday plans ahead of me!

MrsD - sorry to hear you're stressed. Early pregnancy is always awful but particularly so during the danger period. Hope everything settles down a bit over the next week or so.

Thanks for the link Cheeky et al - only listened to the one about miscarriage in general. It's nice hearing it spoken about on mainstream media. That woman's story made me a bit teary - for all my bad luck I've never been put on a labour ward.

I liked the 70% of those experiencing RMC will have a baby in a year stat, though did glare suspiciously at the computer when she said it. I wonder if our thread supports that stat - it kinda feels like it does at the moment, although we have had sad losses recently too.

Sorry one of the podcasts upset you Barking. I have to say that I had no idea the stat for success in ivf was so low, despite having friends going through it. I confess I'd imagined it to be much higher. Precisely why these things should be in the media. Hugs to you though.

Bootles - really feel for you. I have times like that too - not necessarily post-mc/during pregnancy either. I once cried over a pair of lost boots and that was just pmt.

I've had good news today. Tests from a Charing Cross came back negative so just need one more set on 24th June then, assuming all is well, I'll be discharged and allowed to TTC. That falls just before I'm due to ovulate for first time after Cov so there's likely to be no further hold ups. Does a little dance. Ttc again at end of June! eta of next mc early-sept

As someone who ovulates between cd19-22 I find that really interesting Sasha. I'm a bit confused though. I always thought that oestrogen served the first half of the cycle and progesterone the second, so if the first half was too long you were oestrogen dominant and it was progesterone support that was needed? I now have a 'normal' cycle length (only took three years after coming off the pill!!) it's just that the two halves aren't balanced.

As someone who ovulates between cd19-22 I find that really interesting Sasha. I'm a bit confused though. I always thought that oestrogen served the first half of the cycle and progesterone the second, so if the first half was too long you were oestrogen dominant and it was progesterone support that was needed? I now have a 'normal' cycle length (only took three years after coming off the pill!!) it's just that the two halves aren't balanced.

As someone who ovulates between cd19-22 I find that really interesting Sasha. I'm a bit confused though. I always thought that oestrogen served the first half of the cycle and progesterone the second, so if the first half was too long you were oestrogen dominant and it was progesterone support that was needed? I now have a 'normal' cycle length (only took three years after coming off the pill!!) it's just that the two halves aren't balanced.

Sasha sorry you didn't get the answers you were looking for. If it were me I would say throw the kitchen sink at it. I just took all the drugs I could get my hands on and in the end seemed to find the right combination.

Twilight glad you have some results back and all is ok so far. Let us know what the Coventry team come back with. Keeping everything crossed for you. Oh and know just want you mean about your friend. The minute I say anything to my mum about struggling with this pregnancy I'm reminded that this is what I wanted and I must never complain. Very annoying even if it is kinda true.

Brummie the progesterone meds will knock you about I'm afraid. It certainly did with me and I think tanny struggled with it too. All I can say is keep going and fighting. Just remember you won't have to take the cyclogest from about week 14.

Barking I believe with time watch technology and other advances that they are making the odds of having successful IVF are increasing from that figure. You're under 40 and have had a BFP from treatment before now. These are things that are in your favour and I am hopeful for you.

Hi lovely ladies. Feeling much better today so must have been something I ate. Still missed ov though I think- bit annoying but we'll dtd again tonight and see if we catch the end maybe.

bootles sorry you're feeling stressed out -crying sounds perfectly normal to me! Always feel best after a cry! Re the high dose folic acid- my rmc prescribed 5mg for me because my last MC had brain abnormalities and she says it would maybe help prevent that again (Prof Q and my acupuncturist seemed to agree it's a good idea too).

flen sorry about af. It's so bloody depressing. I agree about the testing we went through it last year before mc2 (after about 6 months of trying but I exaggerated and said it had been 10!) it helped me in that I felt like I was doing something positive instead of just waiting for another bfn every month. My GP was great and I had every test the fertility clinic wanted before we even got to them. You have nothing to lose by asking about it. Big hugs cos this time of the month is really shit. X

brummie sorry your feeling crap and the prog side effects sound grim. I think I'm going to do day front, night back to try and avoid that. No experience though yet- first time in about a week. Though might not bother as I'm pretty sure we've missed ov this month.

twilight yay for results and getting back to ttc!

longest looking forward to hearing about shortest's arrival very soon. Understandable to be concerned (those stories are so sad) but you're so close now and all will be well x

mrsd hugs for you too. Scary dates add to the general worry but soon you'll be second trimester and hopefully able to relax a little x

sasha you sound like you've covered so much ground and got great plans in place now. Homeopathy sounds really interesting. I wish everyone just agreed that one way will work though! I think I'd be inclined to go for it this month if I was you- you sound up for it!

Thanks for the links jady mrsd cheesy going to give them a listen. It's so rare to hear MC talked about- makes a nice change.

Hugs barking so sorry you were upset x

Waves to everyone- sorry for missing so much/many no hope of catching up the missed pages!

Hello ladies, I've been advised to come over to this thread today after having a scan today at 9 weeks and finding out I'm about to have my 4th mc. This time the embryo stopped growing at 7w+2d and there was no heartbeat.

I'm just waiting it out now for the mc to start. It's so grim I'm scared. I don't have any bleeding or cramping yet though so it could be a while.

I've always assumed that I miscarry because of my age. I got pregnant first at 39 and turned 42 last week. I accepted it is nature's glorious indifference. Could it be that I'm being fobbed off though? Should I be pushing for more tests?

We've been trying for 2.5 years and I've been pregnant 4 times. My AHM was tested in July 2014 and it was 14.5 which they said was above average for my age.

Today the NHS consultant said there wasn't anything else that they can do. He suggested IVF. I've already done IVF and this latest pregnancy was a surprise after FET. I was well on the road to giving up at that point.

I've had Clomid, 1 IVF fresh cycle, 1 IVF FET. The other 2 pregnancies were natural BFP's.

We both had cytogenics testing after MMC no. 2.
I've had Anti-cardiolipin antibody (Negative), Anti-cardiolipin lgG Ab (Negative), Lupus anticoagulant (Equivocal)

I've had tissue from mc sent off and tested twice and it came back normal. I wasn't sure whether to do it this time so I asked the consultant this morning and he said not to bother.

The other thing that plays on my mind is that my blood group is rH negative. I've never had embryos grow past 7 weeks + 2d so I don't think it's an issue though.

DH has haemochromotosis (needs to manage high levels of iron in his blood). But both my private IVF consultant and my NHS consultants have been aware of his condition, which he manages well, and didn't mention it being an issue.

When I had IVF I heard the consultant say 'right side polycystic' at a scan so I asked him if I had PCOS. He said I have polycystic ovaries but it's mild so they are polycystic but it's not enough for it to be the syndrome. I've had my thyroid tested and it's been fine in 2012 and 2014.

I'm finding myself resolved to the fact that I can't have children but it would help to know that i've done everything before stopping completely.

I'm thinking my current options are:

1. Testing for NK Cells
2. Another round of IVF
3. Continuing naturally
4. Stop

At the moment, stopping is the most appealing option..

Sorry for the depressing post!!

Hi - just read last page and dropping in quickly to say minnie - if you are going to alternate, I would recommend doing it the other way round, so back door daytime and front at night. That way you don't have to deal with any leakage from the front during the day and at night as you are lying down, so nothing much comes out. Also, glad you are feeling better.

annie - so sorry you find yourself here. Big hugs for everything you have been / are going through. If two of your losses were chromosomally normal then might be worth checking out nk cells. Many of the ladies on this thread have been to Coventry - a self funded nhs clinic at a cost of c. £360 (hope that's right!) who will test uterine nk cells, but I think you have to be two afs post mc to go there. I had mine tested at the Lister and was about double the cost once initial consulatation and follow up was factored in, but was easier for me to get to. I don't know much about pcos or ivf am afraid, but am sure someone much more knowledgable will be along soon.

sasha - sorry nhs rmc wasnt much use. If they support the listet protocol though, does that mean you can get an nhs prescription through them, without having to fight with your GP?? Hope so!

x

annie sorry to read about your losses but welcome. I do hope you are being looked after and have help with whatever form of management you have decided to opt for this time. I really don't know much about PCOS but I'm sure I've read that having PCO without the 'S' is a problem because it's the cysts that cause the hormonal imbalance that can lead to rpl, not the syndrome part (eg the gaining weight, dark hair, spots, and so on). And I'm sure I've read that other women have PCO without the syndrome and their doctors do take this into consideration. Are you able to get a different doctor? If not, I'd definitely say you want a second opinion. Your post made me cross on your behalf! x

Annie, welcome. Sorry for your losses. Am I right in thinking that you seem to be losing chromosomally normal embryos? If so, that (probably) isn't down to age (at least in the traditional view of why age - bad eggs - increases mc likelihood). Normal embryos seems to suggest good eggs. I'd push for more tests if I were you. Good luck. x

Thank you so much for your kind replies. I've decided to go for natural miscarriage as that is what I've done before. It's scary but I feel its less risk because unfortunately I don't trust my local hospital to do a D&C without coming out with an infection or something.

The consultant didn't seem keen when I mentioned it and said " we put you to sleep and then there are complications that can occur with anaesthetic of course and then you have an operation". I got the distinct impression he was trying to put me off. He also said "most women miscarry at home and it's just like a heavy period" at which point I said firmly "eh, not in my experience". I've always had a complete miscarriage and once the sac is out the worst is over. Dreading it.

DH is away with work but gets back tomorrow night so I'm going to take a couple of co-codamol now and try to sleep until tomorrow.

I'm convinced that it would be good for me to go to Coventry and in the meantime get a second opinion on PCOS. It's very interesting to hear that it's the PCO and not the S. Thank you for being angry for me! I feel so out of my depth sometimes and feel i've wasted so much time not being a loud enough or pushy enough advocate for my own health. I have though, just you can't know everything.

Anyway, better go and get cosy in bed and sleep the day away, tomorrow is another day and I'll be thinking clearer. Thank you again ladies! XX

ps my traitor boobs are still sore!

Annie - grrrr to your consultant and his heavy period. he clearly isn't speaking from experience. Really hope it is over quickly for you and isn't too unpleasant. Hoping your other half hurries home soon to take care of you.

I just wanted to add that I've had 3 erpcs in the past (one following an incomplete natural mc at 11 weeks) and found them physically much easier than the natural - pretty pain free and with a quick recovery time. I would definitely opt for another erpc if I were to mc again. Anyway, I guess you have probably decided you are doing it naturally, but didn't want you to get railroaded by consultant and just thought it may be helpful to hear some thoughts on erpc just in case you were still in two minds. My hospital were great though - John Radcliffe in oxford, but doesn't sound as though you have much confidence in yours.

Anyway, take care hun.

x

annie hello and sorry you've had such a tough time. These ladies are amazing, glad you've found us. Wrap yourself up in cotton wool. . Then when you're ready - don't be fobbed off! You deserve options and answers.

Thanks march, wadsy & MrsD for your comments & support. AF hit me hard this time (not helped by awful heavy flow - lots of extra laundry - and big clots! Ugh. I'm hoping this is my body resetting itself). Now I'm looking for silver linings that maybe NOT falling first month of trying means my body is being more careful. Trying not to panic about late ovulation and 8 day luteal phase... The uterus scan on Monday was sore but didn't show anything abnormal so that's one thing ticked off the list. It's 6 weeks since RMC took all that blood - should I be chasing results?

sun waves from oxford too.

longest thinking of you for tomorrow.

barking how's your dad doing?
flen focusing on progesterone from BFP sounds sensible, and getting the ball rolling with GP. Some listen, some don't, fx yours is good but if not, shop around. I go to different docs in my surgery depending on what the question is as they all have strengths & weaknesses...

loopy, so sorry. It's so utterly unfair. girlie how are you doing?

brummie, MrsD, everyone else struggling with anxiety and fear - honestly, you're all doing so well. Keep taking it one day at a time. Or one hour. You can do it, time will pass and it won't always feel like today. Do exactly what you need to get through this patch - sod the world, you come first right now

Waves hello and sends love to everyone else, sorry for epic fail at keeping up.

Welcome to the feed Annie. I'm so sorry for everything you have been through and for your losses.

I'm not sure I can see the merits of IVF for someone who seems to be able to conceive naturally. Is it available to you on NHS? IVF certainly won't stop a mc and it's a gruelling process to go through if it's not totally needed.

I would suggest you speak to someone at Coventry to look into NK cells tests and meds you can try. I also think it might be worth having a follicle tracking cycle with a dildo cam being used to look at your ovaries as you move through a cycle.

I wouldn't let age put you off trying a while longer. Lots of women manage to have babies in their 40s and there are numerous success stories on this forum to prove that.

Whatever steps you take next know we're all here to listen and support you. You're not alone. X

Annie I'm so sorry for your losses but I'm glad you found us.

I've had 2 ERPCs and a natural and for me, the ERPC was absolutely the best decision. I needed to close my eyes and it all be over.

If I ever had to go through it again, I'd absolutely go for an ERPC every single time

Big hugs, we are here for you xx