Second Miscarriage - feeling hopeless

[Kappi]

Hi all,
Recently had a scan where I should have been 9 weeks. Everything had stopped at just over 7.
I was given cyclogest from 6 weeks - and low dose aspirin.

4 months ago I had another missed miscarriage at just over 8 weeks. Wasn’t taking cyclogest then as that was my first pregnancy.

I’ve only ever been pregnant twice - and both ended around the same time.

Thankfully the hospital have offered to refer me to the recurrent clinic and have cyclogest from positive test, and potentially look at thyroxin and high dose folic acid.

The only problem is my husband is really shaken and says he isn’t ready to try again - it was too painful watching the anxiety take over me and it’s had a negative impact on our marriage.

Im not sure what I’m looking for here.
Perhaps just a space for venting / organizing thoughts. Or someone to say it’ll be okay one day.

x

I had 2 mm's before 12 weeks too.

3 successful pregnancies after that.

After 2 still far more likely to be a good outcome the next time than a bad one again.

Sorry for your losses.

Thank you for posting - I appreciate you responding! Helps to know you’re not alone

got to try and keep the hope - just need to be patient and hope my husband may feel able to try again so we can have that positive ending x

Hi Kappi
Sadly I am in the same boat and had confirmation today no baby just an empty sac. 2nd time as well. I don't have any sunshine for you just solidarity. It's such a lonely experience and really does take its toll on you and DH.

@justsayso I’m so sorry for your loss.
solidarity is powerful and brings comfort in the darkest times - I’m grateful you responded.

I hope you can find peace soon - in whatever way that feels for you. Such a personal experience but at the same time, shared by many women who also know that pain x

Hi @Kappi

Im so sorry to hear this. You are not alone, in fact I’ve pretty much the same timeline as you!
end of June we found out at our 12 week scan baby had stopped developing around 7.5 weeks. Earlier this month at a 10 week scan we found baby had stopped developing around 8.5 weeks, after we saw healthy hb at 8 weeks :(
It’s so crushing. And the fear and anxiety is overwhelming sometimes. I go from not being able to get out of bed to drawing strength from positive stories from others.
Its also really tough on a relationship. My husband has also just dealt with it in a different way/not been as badly affected as me and I’m worried it’s my reaction to it all that will put him off trying again!
im really glad you’ve got referred - mine won’t until 3 and just said it’s bad luck :( we may go private but that is a minefield itself.
I just wanted to let you know you’re not alone, because I know just how lonely it feels xx

@MamaW05 I’m sorry to hear your sad story so far - the timelines are so similar. Even down to the points at which our pregnancies ended. I’m so sorry for your losses.

Im with you in feeling that my sadness and anxiety has really affected my husbands resilience in trying again in the future.

I think with referrals it’s such a post code lottery and I can’t see that being very fair tbh. The process of grieving for what could have been is hard enough without having to endure it 3 times.

at the moment, I’m not upset by seeing others’ babies and children - but I’m very conscious that might end sooner than I’d like. That’s a part of the process I’m worried by - I don’t want to be jealous and bitter. I didn’t feel that after the first miscarriage - part of me hoped it was a one off and incredibly unlucky. With the second, at a similar time - I’m worried this means there’s something wrong with me.

how are you with things at the moment? I’m still working through medical management and I’m not sure if I’ve passed everything. Such a horrid time.

thank you so much for reaching out and responding - the similarities, although sad for us both, helped me feel I’m not alone. So thank you for sharing your personal journey with me x

@Kappi @justsayso how are you getting on? I’ve got good support but it doesn’t take from the loneliness of the situation - I don’t know anyone else in the same boat. So just thought I’d check in and say hi in case you are feeling the same x

@MamaW05 @Kappi
I'm doing better. It got worse before it started to get better though!
I've had 4 weeks off work and will have another week before I go back. I just don't have it in me to support others at the moment - I work in mental health services.
I wanted to have local surgical management for the miscarriage but it wasn't available on the day I was originally told, so opted for medical (misoprostol) which didn't work. So ended up in a lot of pain with that. Had to have surgical under local 2 days later which was really distressing to me, not painful, just scary and emotional.
They assured me it was all gone but I was in so much pain once the local had worn off, I thought it was just that my womb had been scratched, but called GAU who invited me to come in if I needed to.
The pain went off but then the next day I had a big bleed and passed an piece of tissue, the size of a plum which looked like an egg sac. The staff in GAU confirmed it was pregnancy tissue.
I then had a follow up scan and finally have the all clear there's no retained products.
It's been a nightmare. I've been all over the place emotionally - laughing one minute, sobbing the next, or just feeling empty. Hours have passed, weeks really, so quickly.
But I have been accessing counselling and that has been helpful. I also kept the tissue and held a little burial by myself in a quiet place, which was really sad but very cathartic and since then I have been feeling more stable.
DH has been great throughout but I think he has told himself it wasn't a real baby in order to cope with his emotions. I know when we were pregnant he was very much invested and excited so I really think his stance at the moment is about self preservation and also trying to make sure he is able to support me.
Over the last week since the burial I have felt happier, been more productive and hopeful for the future. We want to try again but are going to wait until after my next period.
I can only hope our next attempts to TTC are successful but we will never have the blissful innocence of pregnancy again. I was at a family gathering recently and there was a baby which I found really hard and had to leave as I ended up crying, I really spoilt the evening and am not looking forward to Christmas. I think my original due date will be tough and my first period will be difficult as well. These miscarriages have taken so much from me. I can feel myself getting upset now.

I hope you both are doing okay. X

Im the same @Kappi ... i had a chemical pregnancy, then my son, then 2x recurrent miscarriages both at 10 weeks measuring 6....One in July, then one in November. Been referred to recurrent miscarriage specialist and in the mean time went to see my gp yesterday who took blood tests while im waiting to be seen by the specialist. Until doctors say I cant have a baby I just cant give up hope. Sorry this awful experience happened to you

@justsayso @MamaW05 hi! I’m doing okay, in that I’ve hit most of the small milestones like, making it though the physical side of the miscarriage - the negative pregnancy test, then now my period.

Ive had bloods for thyroid and now just waiting to be booked in for a uterus scan. Tbh though, I’m thinking of waiting until mid next year before trying again. It’s looking like there’s something immune related so I’d rather wait until I know if I can prevent anything before going back on the journey.

youre right, it is lovely - especially with Christmas coming! How are you both feeling about it?

we’ve all been through so much that it just seems cruel that now we’re thrown into Christmas so soon!

@Doremi1689 im sorry to hear your timeline is also similar! The losses are So hard. hopefully your area is able to see you swiftly! Mine has been about 2 months from the scan to appointment with the consultant.

We’re still trying for our first so I’ve completely lost that excitement that comes from a positive test. I can understand where you’re coming from with not giving up yet

it’s good to know we have a place on here we can come to connect! X

@Kappi you're not alone 💕 I'm in the same position and desperately wanting to be pregnant again. My GP won't refer me until after 3 miscarriages... I'm so sorry I don't have a happy story to share just yet but keeping everything crossed we both get our happy endings x

@Kappi ps not sure if helpful but I started thyroxin last week as blood test confirmed I have hypothyroidism which I had no clue about. It sounds like you might be looking into this too so shout if you want to chat. I know I've felt so lonely with all this x

Sorry to read all of your stories. I had a healthy pregnancy resulting in my son 2 years ago, then found out end of Aug at 9weeks that my pregnancy had ended a week earlier and am currently going through a second early miscarriage.

The doctor said I won't be referred to the recurrent miscarriage clinic yet as under 35 and have had a successful pregnancy but hoping the GP may be able to do some tests as private clinics are so expensive here in the South-East. Really helpful to read about all of your experiences though it makes me sad we are all in this boat.

@Laro2323 it’s such a tough journey isn’t it! I’m sorry you’re in it too.

Ive got a feeling there’s definitely something hormonal/immune system - just waiting on those bloods.

The consultant mentioned thyroxin before the bloods had even been taken. Do you need to wait a certain amount of time on ttc after starting thyroxine? It’s all such a minefield!

Thank you for replying, it's good to built a little safe haven for those bad days!!

@tulipsunday I'm sorry you're in this also! It's a word mix between not being alone and then sad that its happening!

For me the journey seems to be:
2 miscarriages at 8 weeks
Second pregnancy was given Cyclogest at 6 weeks.

Just had blood tests and uterus scan is in process of being booked, just waiting on letter.

The private clinics or services like Spire, often have the NHS consultants in apparently. The one I see at our hospital does one day a week at private!

How are you feeling about Christmas? I'm thinking it's gna be quite tough for me. But one foot Infront of the other as always! X

Thanks @Kappi that's good your tests and scans are being sorted. Do you mind me asking if you had bleeding early on in your pregnancies? I have been looking into progesterone as an option if i was to get pregnant again. I have only had bleeding after the pregnancy has already ended/failed to progress so I don't know if it would be helpful for me.

Still looking forward to Xmas. Next weekend I will be with my SIL who is due in April (the same week my first baby who I lost was due). Will be nice to see her but at the same time a bit sad for me. Hope everybody is ok today x

@tulipsunday I didn't have any bleeding at all - the first pregnancy was literally a shock to hear it had ended. I had had very mild cramping on my right side from 4 weeks, so was scanned every week. Saw heartbeat at 6 weeks, but it had stopped at the 8 week scan.

Second pregnancy, again no bleeding. But was given Cyclogest at 6 weeks after seeing anotber heartbeat - only to discover at the 9 week scan that it had stopped progressing between 7.5-8.

This is what leads me to believe it is immune related or blood clotting. But I'm not expert by any means! Just spent many an hour on Google - not sure If that's a good thing! :) The consultant said they would do Cyclogest again, from the beginning. With thyroxin and in her words 'plan and treat it like an IVF Pregnancy'.

To be honest, I'm just waiting on results before I go back into it all again. Takes it toll on everything, marriage included.

Glad to hear Christmas is looking good for you - I can understand re: your SIL, my friend and I fell pregnant (first one) at a similar time - she is due very soon. You got this - you can do it. when you get that sadness remember youre not on your own you have everyone here behind you x

Hi all!
@Doremi1689 @Laro2323 @tulipsunday sorry to hear you are all in the same position! It feels like a horrible no mans land where the nhs aren’t really interested because you haven’t had 3, but 2 feels very lonely and unusual.
@justsayso im sorry to hear the physical side was so drawn out. I hope you are feeling better now that part is over.
@Kappi it sounds like your hospital are really proactive, giving you cyclogest for the second and referring after 2, great to hear you are already in the process of testing. Do you mind me asking why you think it might be something hormonal/immune? I’m just trying to understand any signs of what could be going on!
From my side I am super lucky I found out my insurance through work will cover some initial investigations, which I’m very grateful for as I just don’t know if I have the heart to go again with nothing changing. The specialist thought given some of my background it was definitely worth looking into but won’t be getting any tests til the new year now.
feeling like Christmas will be a bit tricky - lots of social with friends who have littles the same age as my child who are now expecting their second babies, with very similar due dates to my miscarriages. Trying to be graceful with it and enjoy all the nice things about this time of year 🙏🏻 Thank you for being here, it is good we are all able to connect! X

Hi @MamaW05 can I please ask what tests does your work insurance do? I have work insurance too with bupa but not even sure what it includes . In the mean time I went to get blood tests with my gp this Thursday and I won’t get results back till Tuesday. I got tested; coeliac, progesterone, thyroid, vitamin d and folic acid .. hospital won’t give me an estimate how long the wait list is to see the specialist 😔

@Kappi thank you that's really helpful. Definitely can relate to what you are saying about it taking its toll on your life and relationships. My husband is a lovely guy but I feel he doesn't always know the right thing to say. He is trying to be positive but I just want to be sad/frustrated sometimes and to be feel that's valid. That's why it is good to have threads such as these 😊

@MamaW05 that's great you will have some financial support with the costs. I am trying to get my head round tests etc. so do keep us updated. Don't know whether to go for some or not - costs in the London/Surrey area where I am are so high but at the same time be good to be able to get some possible answers.

Hi @Doremi1689 they said they would cover the consult and then any blood tests or scans they recommended (though not NK cells as they are controversial and the majority of specialists I researched don’t hold with it or recommend anyway). I know blood clotting disorders is one included. We should be getting the list of recommended tests at the end of next week, happy to share though they will have been recommended based on my history.
if it is helpful, a Tommy’s midwife sent me this list of everything they would test for. I’m kind of using this as a basis of seeing where we are as trying to research it myself was just confusing. Sorry it’s not pasted very well it was in a table but you can still see the tests recommended x

Test Purpose Birmingham London Coventry
lupus anticoagulant test to test for anti-phospholipid antibodies (sticky blood conditions) Y Y Y
anti-cardiolipin antibody test to test for anti-phospholipid antibodies (sticky blood conditions) Y Y Y
thromboelastogram analysis to test for global bleeding tendencies Y

detailed pelvic ultrasound scanning to look for abnormalities in the womb or ovaries Y Y*
rubella test to ensure immunity to German measles or rubella Y Y*
TSH, T3 and T4 tests to identify any problems with the thyroid gland Y* Y
vitamin D test to identify vitamin D deficiency Y* Y
coeliac disease screen - TTG antibody test to investigate autoimmune serology, whereby healthy cells inside the body may be attacked by abnormal cells Y Y
HbA1C test to investigate for diabetes Y* Y
fetal karyotyping to identify any structural or genetic problems of the foetus Y Y Y*
parental karyotyping performed if the above test reveals any genetic issues, to identify any genetic abnormalities in either partner Y Y Y*
test of lining of womb for inflammation (endometriosis) part of a double blind randomised controlled trial

@tulipsunday we are also London/Surrey! Yes some of the costs are super high, it’s such an investment. We have gone with Raj Rai at St Mary’s. It’s meant to be one of the leading RMCs, and you can pay to go privately. I felt it was the best and most thorough option before heading down a more experimental road like very expensive nk cell testing/treatment.
I was really pleased with our consult. He really listened and encouraged questions, was easy to talk to and also really understood the emotional impact and said part of their job was to help restore your confidence too. It was just nice to have that acknowledged.
But I’ve also heard good things about nova fertility. They charge £150 for a zoom consult and from what I have read don’t necessarily do tests, but prescribe things on a try it and see basis to cover the most likely problems. That will be my next stop if what we’re doing doesn’t throw anything up. I don’t think I could try again without doing something differently.
sorry if that’s a bit of a ramble, but I know I scoured online for any info trying to decide if to test and who to see, so maybe something in there is helpful x

Thanks so much for sharing @MamaW05

yes I went on the tommys website and saved the link where it suggests all the tests to do…

I really hope for the best for you all.. keep us updated xx

@MamaW05 thank you for the list of testing - that’s helpful to know what’s out there!

I forgot to answer your question about why I think it’s immune/hormones - the gyno consultant mentioned that with the pregnancies ending at 8 weeks it’s possibly due to embedding and/or placenta issues. I’m also seeing a dermatologist consultant for recurrent eczema- when he heard about the two miscarriages he suggested the eczema and miscarriages could be linked to an immune disorder. Then asked me to do bloods for lupus. Hopefully get results soon! I’m very light (weight wise) and have crazy tiredness. Thin hair. But, regular as clockwork cycles and they’re ‘normal’ length and flow. So we’ll be very interested to know what bloods reveal. Happy to post answers if/when get them, to see if they help others