TTC after pregnancy loss 32 - the penguin huddle

[ReeReeR]

New thread 🐧🐧🐧

I have accidentally created a thread 33 as well but will delete that!

@Avocuddles and @LASandOtto thanks ladies but when you've had 8 losses it becomes less of a bad luck thing and more of a failure thing. I've been on this thread since Feb 18. I've had tests they found nothing. So I can only assume my body is failing to do its job. Sorry if I'm to negative. My positivity pants elastic broke

Sending you a big hug @Mumlili8 💜 it's OK not to be positive all the time. This is how you feel and that's OK. I'm not going to invalidate you by saying things will get better or just keep hoping. Just know we're here xx

I've been reading the book that @Avocuddles recommended by Professor Regan, it's really informative, although my miscarriages don't really 'fit' as we've never seen a heartbeat despite early scans, but they aren't technically missed miscarriages because of that, but I didn't miscarry until 9 weeks. Anyway, it's really interesting and giving me food for thought for our appointment on Wednesday.

You had a tough weekend @Avocuddles, hope you did get some rest.

Welcome @Claire78564 I'm sorry for your losses. I recently had my second but am not ttc yet. I need a hysteroscopy in December and seeing the recurrent mc clinic on Wednesday (we're under a fertility clinic so my consultant referred us on). I'm glad you found a clinic that would test you. I'm a bit worried I'm pinning my hopes on them finding an answer (I'm convinced I have some sort of sticky blood / clotting). How long does it take to do all the blood tests etc?

Welcome @Mystie I hope you don't have an infection, but if you're worried, please get checked out.

How are you @LASandOtto? I think I'd find it really tough having close friends pregnant. My friends all have their babies so I'm the last one.

I'm debating seeing the GP, I really struggled last week, everything felt difficult and I was so tired, despite dropping off the second my head hits the pillow, I wake up feeling exhausted. Part of me doesn't want to admit it and part of me is worried about antidepressants and their affect on ttc.

@TwinkleStars15 definitely wait a bit longer. I found out at 11dpo but with short cycles I was around 3 weeks by nhs calculators. It was torturous in those early days, every day dragged. Hope you do get your bfp soon 🤞

Welcome @TtcanotherG, I'm sorry for your loss. I think it's recommended to wait one cycle, some don't. I've not had a dnc though, so not sure if the advice is different?

How are you both @ReeRi @MrsMGE? X

Hello @TtcanotherG and @Claire78564 @Mystie Sorry you find yourselves here but I hope you find some support here

Sorry you got a BFN @TwinkleStars15 but it is early

@Mumlili8 I'm really sorry about your 8 losses. I'm feel really bad now having mentioned to stay positive when I wasn't aware of your situation completely and I bet that being told to stay upbeat doesn't help whatsoever. So wanted to send a hug and say that you're an incredible woman to have gone through so much! I really hope that there is a happy ending for you!!!

@VenusStarr I had a bit of a cry easier, the added news of another close friend pregnant and my mum going back home to Spain today was just too much for me, plus first day back at work as well! Oh, and the BFN on my pregnancy test which is however partly good of course, because hopefully it means no retained products after my MC!

What's the book your reading? Is that the one by the leading professor at St. Mary's for recurrent MCs? Have only read the most positive reviews of that professor and St Mary's who are doing a lot of work with Tommy's too!

I'm really sorry to hear how you're feeling - I think it's completely normal. Are you doing anything like light exercise / yoga / meditation at the moment? I know again not one solution fits all but I found medication and yoga helped me through anxious times. I just did it at home on the Calm App and also used another app called Downward Dog for yoga if you didn't fancy leaving your personal space. Also went to a Buddhist Centre where they have drop in meditation classes for beginners when I felt a bit more sociable and met some lovely people there, totally commitment free.

My GP had suggested this to me by the way as a way of first step dealing with anxiety and low mood! Obviously to come back if I felt a lot worse....

If you continue feeling low you can see the GP of course but I'm like you, I like to avoid more chemicals in the body than necessary, and they may prescribe something or refer you to counselling. Talking helps a lot! Especially to strangers where you don't feel like you're judged and where they approach conversations from a totally different angle! Your friends and family will always want to make you feel better but the sort of conversations they will have with you very much differ from counselling. I've been before and I found it really helped me.

Sending you a big hug x

Thanks @ReeRi @VenusStarr and everyone else. It's nice to be part of a group chat again. Still get upset looking at the old May pregnancy thread and reading how they're all progressing but they were all so lovely and supportive haven't deleted because I'd love to be able to update them with some happy news if and when it happens

@Mumlili8 I'm so very sorry you have had this many losses and it is okay to not be feeling positive. Whst I will say is you have caught so some things are progressing. Having nothing found in tests can be distressing because you want a solution. Have they suggested any treatments despite this? I dont know if this helps but my specialist told me that thyroid levels for a normal person should be 0.4-4.5.i measured at 2.73. Despite this being within normal range they said they have done research and it shows women miscarry/ struggle to conceive when the level is about 2.5 so I'm being treated for this. You ate clearly a very strong lady to have gone through this trauma and you ate still standing. I really hope life is kinder to you. You deserve it.

@VenusStarr it took a week or do for the tests to come back so not too long cx

Thank you for the hug @LASandOtto 💜 sending you one back. I'm sorry your mom is not closer. Hope your cry helped? I sometimes find it does for me, I'm struggling with crying this time round. I don't think I've had a proper cry at all.

The book is miscarriage what every woman needs to know. It's very clearly written, I managed to get a nearly new one on amazon for £6, it's actually not been read (well, it hadn't been). Just make sure you get the newest edition.

I've taken up swimming, go about 3 times a week. I'm not sure it's helping but I'm finding I'm craving to go, sounds weird. I was doing yoga after the first mc, but can't get back into it yet. I've also been referred for counselling through work. Just waiting to hear from them.

Thank you @Claire78564, that's not long at all. I'd heard about some tests needing to be done 6 weeks apart. Hope we can start ruling some things out.
Interesting you say about thyroid, I've read similar and mine is 2.3 (taken last December), so might see if they'll recheck that as I've put on weight since both miscarriages too. It's on my list for when I see the consultant this week! Xx

@Mumlili8 I personally think you are a very strong lady; to still be here supporting other women when you have been through/are going through, so much yourself. You have stuck around on this thread for 1.5 years, that is something to be proud of. I can’t imagine what it has been like going through 8 losses, you have every right to feel like your body is failing you, and to feel pissed off at the world. Have you been offered any counselling? I saw one at a fertility clinic once (previous marriage, male factor infertility) and she was so lovely, even if I need blub throughout the whole session! What is the plan of action for you? Surely it’s not to just continue trying? I found that as long as there was a plan there was something to aim for, if that makes sense. If you don’t have one I can imagine you are feeling very lost. I do apologise if you have already written about this

@VenusStarr yes it sort of helped! I don't cry easily or often and so from time to time it's good to let it out. There seems to always be some perception of people having to be strong or having to hold it together.

I ordered the book and also this other book that came recommended 'it starts with the egg' - just to add yet more pressure  but heard it's interesting.

I was wondering if anyone can share with me what vitamins they're taking? I only ever tried the standard Pregnacare stuff, anyone recommend anything else? Coq10 seems to be recommenced, anyone have any suggestions on that?

@LASandOtto I found the Miscarriage book very informative and interesting, and as @VenusStarr said useful in terms of making you more informed about the things you should be asking for / about at medical appointments. I read 'it starts with the egg' after my acupuncturist recommended it. There are some ok bits in there but to be honest I'd say that some of the ideas are a little extreme and to be careful not to take it too seriously if you want to maintain your sanity / a normal life! For example, avoiding plastic is an admirable thing from an environmental point of view but avoiding eating or drinking anything stored or prepared in it is a different thing entirely, and I'm pretty sure very few of the millions of people who have healthy babies every week go to such extremes!
I take Pregnacare Max as apparently it contains a form of folate which is more readily absorbed than the standard folic acid, and also Ubiquinol which is the (apparently) more superior form of coQ10. I also take a high strength vitamin c at the same time as the Ubiquinol as apparently that aids absorption. I go to an acupuncture clinic that specialises in fertility / women's health and they advised both of these, it's a fairly expensive regime (about £40 a month in total) but figured worth a try as they supposedly improve egg quality over time.

@VenusStarr sorry you're feeling so down and exhausted. It's worth speaking to your gp, there's no need to necessarily go near antidepressants, they might be able to help you access talking therapies or have other suggestions.

@Mumlili8 I feel like this weekend the elastic snapped on my positivity pants and they're currently pooled around my ankles! I can't imagine how hard it is for you. I relate to that sense of feeling 'broken', I have used that word a lot of times recently, especially when I see so many others have relatively smooth journeys to parenthood. I'd like to hope that if some part of us is broken that it's a fixable one. I'm rooting for you....

Welcome @Mystie and @Claire78564, sorry that you have found yourselves here but thank you for sharing your stories - you are definitely in the right place for support. @Claire78564 I also have clotting issues and had a deep vein thrombosis about ten years ago. As a result I've been on heparin for both of my pregnancies, and also took aspirin for the second one. Frustratingly both ended at 7-8 weeks but I think I have other issues at play as my periods prior to the first pregnancy were very irregular and light.

I rang the fertility clinic today to tell them some days I'm unavailable for my HyCoSy appointment due to work and was offered one this Wednesday due to a cancellation! This is great as I'd been told the wait is usually 6-8 weeks although I'm a bit apprehensive about the procedure itself as it doesn't sound particularly pleasant or comfortable. I doubt it is going to find anything but it's good to tick another test off the list I guess......

Ps on top of the supplements I would definitely recommend acupuncture. It's quite expensive but I do think it helps to relax you and it seems to have physically benefited me too. My first conception took a year, but the second one, supported by fertility acupuncture, only took two months. Might just be coincidental but there's no harm in trying.....

Thanks @Avocuddles I'm hoping I dont miscarriage again...like all of us. I'm quite optimistic that the treatment once we catch might work... have you been tested for any other issues? If you dont mind me asking what was the blood disorder? I've read lots of positive stories about the treatment so fingers crossed. My last pregnancy was classed as perfect and well defined prior to the loss which was a shock although it helped I guess in some way to see our baby moving about. Feels less like a dream. Did you need to be shown how to use the injections? I should imagine we will all get there eventually but it's such a shame the I innocence and happiness has gone x

@Avocuddles thank you, I shall let you know how I get on. Yes I think I heard somewhere that there's all sorts of recommendations in there from avoiding perfume, any plastic, etc etc. From a reality check perspective, you'd have to give up normal life to follow all the advice so, not an option for me. I don't want to feel guilty if one day I have a glass of wine or shock horror, a caffeinated coffee! I mean there's people out there taking a lot less care of themselves and they seem to be able to manage a healthy pregnancy nonetheless! So all in all, my aim is to strike a balance! It can be very depressing following such a strict regime and then have no happy outcome. I truly believe in the balance of things!

If you wouldn't mind could you post a link to the Ubiquinol you purchase? I'd like to add it to my regime and will try it with the high vit C too! Thank you! I think @VenusStarr mentioned using it before as well!

I'd love to try acupuncture... are you based in London and have any recommendations?

I'm going to have to google the procedure you're having as not too familiar with the terminology sometimes, but I hope it goes well and perhaps provides some answers? Good you got fitted in last minute - sometimes it's a bonus calling and checking!!

@Avocuddles, thats reassuring that I'm not the only crazy bleeding lady and you conceived quickly. I was going to speak to my GP today but I stopped bleeding and felt silly calling for the sake of a day and a half. I'm calling my bereavement midwife tomorrow so I'll mention it to her. Sorry to hear you are feelin low and having to sit through an anncouncement big hugs I visited my baby cousin who was born this week in the hospital our baby was born in. Whilst we were there I took my mum around to see the memorial tree and the door to the suite Alex was born in was wide open, you could see the bed and everything. I was surprisingly comforted by it.

@Mumlili8 I can't begin to know how you are feeling after 8 losses massive hugs for you. Your amazingly strong and a wonderful person to be here helping everyone else through to.

I had an answerphone message left for me whilst I was out today, our genetic tests are back so hopefully tomorrow we will know why it happened or at the worst rule out what it wasn't. I'm so nervous and feel a bit sick in anticipation.

@Claire78564 with the treatments your odds should definitely be in your favour next time. I might just be unlucky, I might be that 20%, but as it took a long time to conceive in the first place and there were doubts as to whether I was ovulating I think there's probably something else going on for me, and the clotting medication was doing its job. I don't have a specific diagnosed condition other than some unusual protein levels, but due to my clotting history I was deemed very high risk from the second I first fell pregnant. Apparently without anticoagulants my risk of a clot in pregnancy is more than 1 in 5 which is pretty scary, but with the injections it should be in line with the general population. During my first pregnancy I was a bit scared of injecting and my DH did it for me, however in the second one I quickly learned to do it myself. It's not that bad really, you do feel a bit like a pincushion sometimes but it's generally no more painful than a small sting.

I know exactly what you mean about the innocence having gone, but I would try to view your next pregnancy through a positive lens. As you say the odds are very good with a treatment regime in place, and you should try to see the next one as a fresh start, and a very different situation to your previous pregnancies where you were unaware of the lupus. I really hope that both of us have a happy and healthy full term pregnancy next time round!

@LASandOtto this is the ubiquinol I use - I think it's the highest strength you can commonly buy.... https://www.amazon.co.uk/Ubiquinol-Softgels-Enhanced-Absorption-Coenzyme/dp/B071NFJZSV/ref=sr11_6?keywords=300mg&qid=1571684294&sr=8-6

I'm based in Leeds (though was once a London girl!) and am lucky enough to have a great acupuncture clinic on my doorstep. I'm sure there are others who can give recommendations but it's worth a search for fertility acupuncture. The ladies at my clinic are all tea west trained - I believe the actual zeta west clinic in London is very expensive but this link shows all of the accredited practitioners across the country.... www.zitawest.com/network/

The HyCoSy involves putting dye through your tubes / uterus to check for any physical abnormalities. As I have conceived naturally I imagine it will look ok but still glad to have the opportunity to be checked out!

Let me know what you think of the books when you read them.....

Thank you @avocuddles! Ordered it!

I've heard of Zita West when I did my research of where we could go for some tests after we've just had the second MC, I understand they offer more of a holistic approach which does appeal to me as I am a firm believer in psychosomatic connections. I'm currently trying to get an accredited nutritionist degree as I've always been very involved in that area.

I'll do some research on the options in London! Thanks for the suggestion!

Good luck for the the HyCoSy, I understand what that is now and have of course heard of it. In a way it's good to get it all checked out. How are you feeling about it?

@Avocuddles yeah you make some valid points. So hard to stay positive but we will all get there one way or another. I would chat to your doctor about your concerns about something else going on. I worry constantly that I have low progesterone or something but the specialist dismissed it. I can imagine it was pretty scary to be diagnosed in that particular way but theres still a chance you will go on to have a baby. I've read about so many women who have struggled and then go on to have 3 babies fine like the first one was hard. Acupuncture sounds interesting I might give it ago. I have b12 injections every three months so I'm not worried about the pain just worried I wont do it right lol x

@LASandOtto I'm feeling ok about it other than slightly nervous at the thought of the procedure itself. I'm pleased that the fertility clinic has been happy to keep giving me the tests in spite of my pregnancies - we had just been referred when I fell pregnant the first time and at that point I thought (incorrectly it turned out) that I would never be able to conceive naturally.

My acupuncturist definitely has a holistic approach. The first half of each appointment involves talking about emotions, physical health, nutrition etc, then the needling is tailored to your needs based on where you are in your cycle, or what you need to get out of the session be it stress relief or needing an energy boost. On her suggestion I signed up to Medicash which has been a great investment - I think I pay out around £28 a month but can claim back £350 worth of acupuncture fees (50% per session) as well as several hundred more for optical, dental and even Indian head massage, so it's well worth looking into, especially if you have or need glasses or contacts.

My next decision is whether we should actively 'try' this month or hold off until the next cycle. In three weekends time we are away with extended family for a weekend to celebrate my mum's 60th, and in four weeks time we're jetting off for an all inclusive week in Spain with my parents. I feel like both could be somewhat muted / stressful if I was on my two week wait, and that it might be better to just enjoy them before getting down to some serious baby making. The other part of me though feels like I don't want to 'waste' a precious month. Decisions decisions.....

@Claire78564 how did you find out that you needed B12 injections? Only asking because I only recently remembered that my mum has pernicious anaemia and like you has the injections quarterly. I'm not sure if it can hereditary or indeed if it can impact on pregnancy but I'll mention it as my next appointment.

Although I'm not under the recurrent miscarriage clinic I've been fortunate / unfortunate enough to have most of the same tests via the fertility clinic (Leeds Fertility) and via the consultant obstetrician who manages me from a clotting perspective. I went for more fertility related blood tests last Friday so hopefully won't have to wait long to get them back, but everything so far (including DHs sperm analysis) has come back clear. I guess it could be that the issues are chromosomal which none of the tests so far would have picked up.
You're right the blood clot was pretty scary but I was only 24 at the time and TTC was certainly not on mind so it's only recently over a decade on that I've really become aware of those implications.
Do you have heparin injections lined up ready or do you need to go in as soon as you get that BFP? I know you've been under the private clinic but do you have an NHS consultant for the clotting disorder or is it all managed together?

@Avocuddles I really hope you get the answers your need from the tests and you're being proactive so all the best to you. I found out had the b12 deficiency after a bout of viral arthritis as 21. They found it from the symptoms I had. I dont have the auto immune version of this deficiency just the deficiency itself. They want to try to take me off the injections after I've had a baby but we shall see. I'm 30 now and only been trying for the last 9 month.

The main thing is you know about the clotting stuff so you ste a step closer and things can only get better when you have information to deal with.

I was prescribed the injections and have 3 weeks worth at home waiting for when we catch again. The specialist advised it was best to have them ready for the next BFP so it gave me a good feeling knowing she believed we would catch again soon. She's currently writing a letter so that I can go through my gp and get a specialist on there. Its expensive. She's told me that if the nhs wont touch me I can be referred back to her but obv this is expensive!

With regards to trying again I would just go with the flow and let nature run its course if you are ready. I've recently got a new job and theres a chance I guess I could be pregnant in this cycle meaning it would mess maternity pay up but meh if anything I've learned from all this that life is too short to put stuff on hold x

@Avocuddles that sounds so amazing - you're a fountain of useful information I am definitely going to look up Medicash! I wear contacts and glasses and so it may be a great option for me... I was just on google looking at Acupuncture options in London. As with anything I'll need to do a bit of research as I'm sure like in any profession, you'd want to find sometime who's got sufficient experience and knowledge in that area of expertise and is also focused on fertility specifically. Will keep you posted. Does your OH also go?

I hope your HyCoSy goes well, try and see it as a stepping stone in the process! Let me know how it goes please, if you want to!

I'm in the same boat as you - we could TTC again as I got my BFN today so am assuming the MC is now complete, but, I'm trying to arrange our appointment for private tests (at least all the blood tests to check for clotting disorders, hormones, etc.) so don't know if it's worth just waiting for that to be done first. There seems to be so many clinics in London and so I've done some research and contacted a few of them to see what appts they have etc.

I'm sure similar to you, having been pregnant for weeks and weeks this year with no outcome has meant missing out on a lot of social life and a part of me feels like it would just be nice to have a relaxed, fun filled run up to Xmas. Sounds like you've got a few nice travels coming up - where are you going to in Spain? I grew up there ! I hope you'll have a gorgeous time away!

@LASandOtto Definitely second @Avocuddles on the acupuncture point. It didn't help me with conceiving, but it made me a lot calmer when I was at my lowest. I had conception reflexology this cycle and I think it helped with bringing my O forward by a week, after having a very late O last cycle (CD25), it looks like it happened on CD18 this cycle. I am also taking VitD, Iron, 5mg Folic Acid prescription (family history reasons non related to MC), and B Complex from Lloyds Pharmacy - this is also supposed to help with regulating your ovulation/luteal phase. I did hell of a lot of reading following my MC and chose to avoid supplements which include Vit K in case I have undiagnosed APS (sticky blood syndrome). They don't tell you about this, but you're not meant to take it with blood thinners. I'm not on any now, but of course with no tests, I don't want to do anything to decrease my chances in case I do have an underlying issue. Thought I'd share so you can perhaps do your own research depending on your particular circumstances Xxx

@Avocuddles I went to see a mental health nurse on the NHS today and she was lovely and kind. One thing she said is just go with the flow, do what you feel is right, if you feel like having sex, have sex (without timing it specifically for conception only), plan events, weekends away and holidays. She's been through a loss herself and said her husband and her had so much saved for that baby, s/he could have had everything she'd ever wanted, and yet the MC happened. She said it took her long 2 years of TTC, waiting for things, doctors saying "how about a fertility treatment" and she said to herself that she didn't want any treatments. She spent all this money on a month holiday with her DH in the most stunning places around the Greek Islands. She discovered there she was pg after all this, and she ended up with two boys in two years, now in their 30s. So, the morale of the story is: don't overthink. Just go to those events you have planned. Have sex when you fancy a bit of action. This was the life we used to have before all this happened, isn't it? We need to get back to normality not to forget what happened because we never will, but because we deserve to live a normal life. Xxx

@MrsMGE wow thank you so much for all this information. I really think it's amazing how you ladies gather all this information after reading from various sources - I've just started doing that and it just feels never-ending (the amount of information to review and check). I will most certainly check out the details on Vit K - hadn't heard that before either. On older threads I saw that back in 2008, ladies on here were told by their GPs to just take the baby aspirin when they had previous MCs, and that without having any tests done. I am just wary of self medicating, but annoyed that they refuse to do any tests at all after 2 miscarriage. Surely the money saved by not potentially putting women through a third trauma with another miscarriage would offset doing some basic blood tests at least. It really angers me that there's not more support after two miscarriages.

What's your plan of action now @MrsMGE? X

@MrsMGE that is a great story from the nurse.

It is so hard to think of anything else but getting pregnant... I think even more so when you were pregnant and have then suffered a loss.

I had a postitive CB OPK, then a postivie IC OPK yesterday - today is 3 weeks on from the ERPC... just going to see what happens I think.. but it is so hard not to constantly think about it!!

xx