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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Recurrent miscarriage - a story of hope

29 replies

Sazzle12345 · 04/04/2023 12:16

Firstly, I apologise for the length of this post. I think I have probably read just about every miscarriage / recurrent pregnancy loss post on Mumsnet and know that for those suffering information is hard to find. I therefore want to give as much detail as I can in the hope that it might help somebody.

So here is my story…

In January 2017 we decided to start trying for a baby. I was 32 and had no reason to believe we would have any difficulties.

In February I had my first BFP. We were thrilled. But at 5 weeks I started spotting and by just over 6 weeks it was all over.

At this point I figured it was just one of those things. I had fallen pregnant quickly so we would try again.

In April I had my second positive. This time I started bleeding at 6 weeks. It was all over again.

I knew this could be bad luck but I wanted answers. I paid to see a private gynaecologist (not a RPL specialist) who basically said lupus was the only known cause of RPL (not true) and he would test for that. I didn’t have it. He suggested I try low dose 75mg aspirin daily next time and he would give me regular early scans.

In September I had my third positive. I spotted at 6 weeks, but only for one day. I took aspirin daily, I had weekly early scans with the private consultant and in late June 2019 my beautiful son was born. At this point I thought that my miscarriage journey was over.

In June 2020 we decided to stop using any contraception and see what happened. We were in no rush, but knew we would like a second.

We were surprised but thrilled when in July we had a positive - our fourth. Given my history I paid for an early private scan at 7 weeks. All was well. I took aspirin again and looked forward to having 2 under 2.

At 10 weeks, still feeling nervous, I paid for a second private scan. This was during lockdown so went along on my own, not really believing anything was wrong, but just wanting some reassurance. This was my first experience of hearing the words “I’m sorry, but there is no heartbeat”. I was broken. I had to wait on my own for someone else to come and double check, before walking alone to another department to be given paperwork explaining my options. This was my third loss and my first silent miscarriage.

I opted for medical management (a tablet) which for me was brutal. I bled for around 12 weeks and my mental health hit rock bottom.

Whilst this was my 3rd loss, the NHS requires 3 consecutive losses before investigating, so we agreed to just try again.

January 2021 was my next positive - this ended at 6 weeks.

March 2021 - positive again. This time after doing research I asked my GP to prescribe progesterone pessaries. I used these and took aspirin and held my breath. I was offered early scans by the consultant that I saw privately, and at 6 and 7 weeks these looked good. At 8 weeks growth had slowed. I was reassured that measurements aren’t accurate etc, but I knew. At 11 weeks I got to hear those words again (alone - still due to Covid) there was no heartbeat. My second silent miscarriage, my 5th loss and my 3rd recurrent loss.

This time I opted to let things happen naturally. It took another 3 weeks, but I found this a much better experience than the medical management. I was offered genetic testing of my baby. Taking my tiny baby into hospital in a lunch box was horrific (again, alone). This was made worse by being met by a heartless consultant who took my baby from me and said “you’re 36, what do you expect”. This was without doubt the lowest I felt in my journey. Up until this point I had not taken any time off work and had just carried on. This time I was broken. I took a week off to try to heal, but all I could think about was having another baby.

The genetic testing wasn’t successful - I had carried the baby too long after it had died and no genetic material was available for testing. I buried this baby in my garden along with his or her sibling. This was important to me and helped with me healing.

The only positive was that I had now reached the magic 3 recurrent losses so was offered testing. I will spare the detail of those, as in short, nothing was found. No answers. Try again.

November 2021. Positive again. Loss at 6 weeks. Loss number six.

January 2022. Positive again. Loss at 6 weeks. Loss number seven. Through each of these losses I took aspirin and used progesterone.

At this point, after further research, I asked to be referred to the Tommys unit at Coventry hospital (a 4 hour drive away). I spoke with the wonderful professor Quenby who agreed to carry out further testing (genetic) and asked if I would like to be part of the CERM trial. You can find details online, but in short investigating whether a common antibiotic can help prevent miscarriage in women with chronic endometritis (an inflammation of the womb lining - not to be confused with endometriosis).

The genetic testing was clear. I signed up to the CERM trial. This involved a biopsy which I found painless. I was found to have endometritis and was given tablets - I do not know whether these were a placebo or antibiotics.

Once I had finished these I was told to try again. I was told to take aspirin, use progesterone and ask my local hospital for 2 weekly scans from 6 weeks.

April 2022 - positive again. I took the aspirin, I used the progesterone.

I also asked for my thyroid to be checked once pregnant. Whilst my levels were normal when not pregnant I had read a study that suggested some women’s levels only become too high when pregnant. Thy were tested at 4 weeks (normal) and 6 weeks (outside the normal range). I was put on 50mg of thyroxine.

The 6 week scan was good, as was 8 week. I held my breath. I couldn’t think or really do anything for those first weeks. I passed the 12 week milestone. I thought my anxiety would fade at this point, but it never did. I googled relentlessly. Nothing reassured me for more than a few hours. I just counted the hours and days.

In January 2023 I welcomed my beautiful daughter who is currently asleep on me.

She was my 9th pregnancy.

Holding her now it has all been worthwhile. But, as someone who is generally strong mentally, this experience has without a doubt been the worst thing that I have ever been through. To describe it as brutal doesn’t seem strong enough. The strain on me and on my marriage has at times been too hard to bear. But we got there. For me, and this is a very personal thing, I never wanted to give up. The thing that kept me going was trying again. I just had to keep going.

I will never know what was different this time. Maybe the antibiotics (if I had those and not a placebo) maybe the biopsy (there is some thought that this can promote healing) maybe the thyroxine. Or maybe, this little girl was just supposed to be mine.

To anyone on this journey, my heart goes out to you. I know that not everyone gets a happy ending and I do feel extremely lucky to now have my two beautiful children. I hope that my story may help somebody to push for the help they need - I found that throughout I had to push and ask and research as the support just isn’t there unless you ask for it.

If anyone going through this would like to message me, I will do all that I can to support and help.

I hope that my story provides someone with some hope x

OP posts:
Sb86 · 04/04/2023 12:53

Wow what a journey you and your husband have been on, I'm glad you have your little ones and I know that they will never take away the pain of losing your other babies but I wish you and your family so much love and happiness for your future ❤️

Jane1284 · 04/04/2023 12:54

Your story had me in tears. I can only imagine how tough these years must have been. So happy to hear you have your two beautiful children in your arms now. So sorry for all your losses. I am so sad to read what that consultant said to you- so cruel. xx

rwalker · 04/04/2023 13:04

My friend had 6 miss carriages and 2 healthy girls
They put it down to the 6 she lost being boys

custardbear · 04/04/2023 13:13

Aahhh congratulations that's wonderful after such distress. Miscarriages were an issue for me too, had 3 where there was a heartbeat only to be told they'd stopped growing in first trimester. I also had about 5/6 where I'd had positive results but again losses before I'd had a scan (again around 5-8 weeks).
I had early scans and aspirin too, as well as HCG jabs and high concentration folic acid. I had my first at 37 (2.5 years after TTC) and second at 40 when DD was 3.5, we hadn't been using contraception .. so again took a lot of time.
They're 11&14 now 🥰🥰🥰

As hard as those miscarriages were I do thank my lucky stars I have my two amazing children.

I recall the head nurse telling me, at one of my scans when I was bleeding g but wasn't sure if it was a miscarriage because I'd been bleeding the week before all was ok, and I asked if there was anything to see (meaning heartbeat or baby) and she just said 'no, you're empty' ... I couldn't believe the language she used, it was so harsh and unkind, that was about 16 years ago and I remember as clear as day 😖

LethargicButAwesome · 04/04/2023 19:00

❤️❤️❤️❤️ I can only imagine the rollercoaster your on-thankyou for sharing. I’m on peg numb 6 after 8 years of ttc, 1 dc. Taking every medication there is to take. Been told my ovaries are shrinking.

Sazzle12345 · 04/04/2023 19:58

LethargicButAwesome I’m so sorry that you’re going through this. If you want to chat please do send me a PM - I may not be able to suggest anything you haven’t already tried, but I will help in any way I can.

Sb86 and Jane1284 thank you.

custardbear the age gap between your two is the same as mine. I am sorry (but not surprised) that those cruel words are still fresh in your mind. Clearly so much more training is needed (although I was also lucky enough to meet some wonderful kind nurses).

rwalker I am sorry to hear about your friend. I am not a medical professional and I make this comment only because I know how much those suffering RPL look for answers, but my understanding is that (with very rare and limited genetic reasons) the suggestion that someone can’t carry one gender is unlikely to be true. It is one of many things said to cover the sad reality that so little research has been done on this area that we just don’t know the cause in the majority of cases. This is what professor Quenby and the Tommy’s team are trying to change.

OP posts:
Kari4596 · 10/10/2023 15:58

@Sazzle12345 Thank you for sharing your story, agree it is a brutal experience and the support is just not there. May I ask what was the waiting time for Coventry and what is their approach to investigations? Are they doing everything in one go or? Just had my 3rd miscarriage 😢

Sazzle12345 · 06/01/2024 14:01

I’m so sorry for the slow reply.

The waiting time at Coventry back in 2022 was not long, maybe 3 months. The initial consultation was over the phone.

When I was seen I had already had a lot of the routine tests, but they did the others in one go. I’m sure there is further testing beyond what I had, but certainly I felt they were very thorough.

I do hope that you are ok x

OP posts:
Hhdxx · 23/01/2024 20:52

Heya,
I wondered if anyone could help me please.
I took part in the cerm trial nearly 2 years ago and was diagnosed with chronic endometritis. I took doxy antibiotics for 2 weeks but I've since had 4 chemical pregnancies. I don't know what else to try?
Any help would be so grateful x

SEF12345 · 27/01/2024 10:29

@Hhdxx did you go back for a biopsy after the antibiotics to ensure levels are back to normal? Maybe you needed more than one course of antibiotics. I am currently taking my first course but they’ve asked me to come back after 2/3 cycles to repeat biopsy to ensure levels are ‘normal’ range

Hhdxx · 27/01/2024 17:23

Heya. Do you mind me asking where you went?
Tommy's didn't invite me back for a repeat biopsy x

teap0t13 · 27/01/2024 17:41

What a journey and thank you so much for sharing. I really needed to read this. I'm so sorry for all your losses but I am so happy that you've got your 2 babies. Me and DH are just recovering from our 4th recurring miscarriage (no live children) and it feels never ending. One at 5 weeks, a MMC at 12 weeks (baby died at 8 weeks), a blighted ovum at 7 weeks then another MC at 6 weeks. All within 14 months. Absolutely heart breaking. I've had bloods from GP which was all clear and I have been referred to the hospital but wait lists are huge. We've been told to just keep trying. Everyone around me is pregnant, I'm finding it very hard right now

SEF12345 · 27/01/2024 20:30

I am under Tommy’s Coventry Professor Jan Brosens. @Hhdxx he has advised me to take the antibiotics (I have 4 days left) then have to have a couple of cycles and then go back for a repeat biopsy to ensure my levels are returned to normal off the back of the antibiotics.

SEF12345 · 27/01/2024 20:36

@teap0t13 if you can afford to I would call Tommy’s unit and pay for Biopsy. I have had 5 MCs in 18Months. After the last one, we had the biopsy and they have identified a problem with my womb. All my nhs tests came back normal, bloods / scans etc, baby’s were sent off for genetic testing and all came back with no genetic problems too. I wish we had known about the test earlier, especially because they say with every MC increases the chance of the next pregnancy ending in MC, we don’t want to keep trying and lessening our chances next time round. In my case, just keep trying would never have worked for us, they have found an issue and it needs to be resolved to allow me to go full term. Keep strong, it’s a hard exhausting path, hopefully we will get there 🤞🏻🙏🏻

teap0t13 · 27/01/2024 20:40

@SEF12345 thank you for this. Unfortunately we have absolutely no money spare and can not afford testing like this until debts are paid off (in 3 years) so it is a waiting game for us 😫

SEF12345 · 27/01/2024 21:03

Try low dose aspirin and ask your gp to prescribe you progesterone pessaries.
also, you can get vaginal probiotics which clear small infections in Amazon. And anti biotics (doxycycline) if you can get hold of them, try them as this is prescribed for reoccurring MC patients. @teap0t13

Jeannie88 · 27/01/2024 21:06

Just my experience but everyone I've known who has had miscarriages has gone on to full pregnancy amd I mean everyone! X

SEF12345 · 27/01/2024 21:21

@Jeannie88 yes my consultant said this to me, it’s just figuring out what / if there is a problem and if treatment is required. In my case, it’s not just ‘bad luck’ but I will definitely (hopefully) get there in the end. As I hope & pray for everyone else will get their rainbow babies too.

Hhdxx · 28/01/2024 21:48

@SEF12345 do you mind me asking what they tested your biopsies for? Xx

SEF12345 · 29/01/2024 07:45

@Hhdxx its called the DEFT test, it looks at the womb lining to ensure it’s ok for implantation & to be able to carry. It measures nk cells, plasma cells, the thickness of the lining etc puts all the data together & with this data they can say if your womb is the cause of reoccurrence MC they then medicate based on results.

Hhdxx · 29/01/2024 07:50

@SEF12345 thank you! I might get this done.
What medication do they give you?
I'm currently on hydroxychoroquine for suspected NK cells. I'm waiting for my blood tests. I went to a private clinic in London. X

Zippedydoodahday · 29/01/2024 08:03

I think that it is possible to see Dr Shehata's team via the NHS. They have more limited options than they do privately, but I believe can still give a lot of the core medications. Would take some Googling to figure out how people have done it.

Hhdxx · 29/01/2024 11:19

@Zippedydoodahday thank you. We've already started paying privately for him. I will have a look though. Thank you. We've already spent £4k the other day 😭

SEF12345 · 29/01/2024 12:51

They have prescribed me with doxycycline as the test identifed chronic endometritis (the test is one of the few around to be able to identify this), I have to go back in March for another biopsy to see if the antibiotics have reset my nk and plasma cell levels back to normal range and then they are putting me on a treatment plan for my missed MCs (2/5 were MMC) @Hhdxx i would recommend the test, it was £200 intial consultation and £700 for the biopsy. Results take 2/3 weeks. Wish I had done it sooner.

RoseLeo · 01/02/2024 21:07

Hiya, I’m in a rollercoaster of failed ivf transfers after a complex miscarriage a couple of years ago and I think I may have endometritis. Can I ask what antibiotics you were on?