Recurrent miscarriage clinic Leeds

[PB6]

We sadly found out today we had a missed miscarriage. I’ve had one 2 years ago exactly. Both have been first trimester naturally conceived ones. In between the two we had 2 failed ivf cycles too.
We have been referred to the recurrent miscarriage clinic in Leeds. Has anyone before? How long did it take?
We are too scared to try again now until we are seen.
just wanting to move forward as I’m 34 and DH is 37 and we have been trying for 3 and half years

I am so sorry to hear about your losses.

I have no experience with the clinic itself, however I did see a very good consultant there due to second trimester loss.

You'll be in good hands, ask lots of questions and trust your gut instinct.

All the very best x

@Mysleepingangel
thanks. Can I ask which consultant did you see?
I have so many questions. I really hope we aren’t waiting too long

I saw Dr Simpson because he's the specialist in the area I needed it. Tbh I self diagnosed because my issue was quite particular and I did a lot of research. So I reached out to Dr S myself and self referred.

I hope you aren't waiting long.

Hi @PB6,

I'm so sorry to hear about your losses 💔 This is a really hard journey isn't it. I just stumbled across your post but I was referred to the Leeds clinic just before you in November 2022 after my third loss, a missed miscarriage. Today I received my appointment letter for the 24th March (appt with Dr Jayne Shillito) so you should receive yours soon. I did keep chasing to make sure I was on the list still but if you need to reach them, their direct number is 0113 206 4770.

I wish you all the best xxx

I was referred to Dr Shilitto’s clinic in 2019 after my 3rd miscarriage. I was seen pretty quickly - my miscarriage was managed at Leeds in July and my first appointment was September 2019. Covid affected waiting lists so I’m not sure how much longer they are now, but I know a friend who was refereed last year waited 15 weeks from referral to 1st appointment. I was asked to ‘try not to ttc’ between the blood tests, but if I had got pregnant they would have seen me right away for an early scan and put some measures in place.

In December 2019 they diagnosed APS, a clotting condition, and after treatment with aspirin, lmwh, fortnightly scans in trimester 1, our rainbow baby arrived exactly a year after our first appointment.

I was back at the clinic last year with my next pregnancy. Sadly ended in miscarriage, which was picked up at the clinic during the early scans, and I was well looked after by them. Dr Shilitto phoned me for my follow up, and helped me remain positive about my odds of success. Progesterone was added to my mix and I was back at the clinic 2 months later. I’m currently 18 weeks.

By sad chance, 2 of my friends are also under the clinic, as are 2 more acquaintances. Some of us had another loss, one had 2 more. Some of us now know what caused our losses, some don’t but have tried medications which seem to have made the difference - but most importantly we are now all due with our second rainbow babies, all due within a few weeks of each other, having been supported throughout our pregnancies by Dr Shilitto and her team. Once you are under the clinic you are with them for all future pregnancies.

Every doctor I’ve come in contact with knew who she is and there’s a lot of respect for her and her work and (imo) rightly so, I honestly can’t speak highly enough of her and the rest of her team, I’m so grateful to them.

I know it’s not the question you asked but I hope my experience gives you confidence and helps you have hope. Wishing you all the best xx

@Haz1990 @Littlegoth

thanks so much for your responses.
We have had our initial appointment which was helpful in many different ways. Finally to meet someone who had time to listen to our story but also recognise and agree with us that something wasn't right.
I have had my initial bloods and waiting for scan and then to start trying again after but to use progesterone from day 21. I think we will get the follow up appointment once everything is back. Just hoping that identifies something else which can be treated.
Hearing your story @Littlegoth does fill me with some hope and I am feeling more positive. Just worry now as I'm 35 in 2 months and how long do we keep trying naturally before going to ivf again. Coincidentally both times I've been pregnant they have been natural pregnancies.

that's amazing also that it's for all future pregnancies! I have had to fight so many times to be seen in EPU

I was 37 when I was referred, almost 38 when my little boy was born, and I’ll be well on my way to 42 when this one arrives in July. We didn’t need IVF luckily, but we were prepared to get moving on it in case we did.

Because my medication is prescribed as soon as I get a positive test I have to call the hospital right away. First time I got my positive test at 7:30 on a Saturday morning, and was seen at the EPU and back home by 11 and that’s been the pattern so far, so if the tests find anything to treat then at least you know they will get treatment in place quickly.

If you need to call the clinic number on non-clinic days it goes to Gynae outpatients and they are also really good at getting you advice or seen asap. Good luck x

@Littlegoth I'm impressed how quickly you managed to get seen. I do feel more reassured that I will get support quickly when we do have a positive test. Now to just wait for the next appointments and hope make some progress and a positive result.
Good luck for your pregnancy x

Everything crossed for you @PB6 🙏🏽 and great that you’ve already had your appointment!

@Littlegoth thank you for also sharing your experience, it’s so lovely to hear a success story! And so helpful to know that you’re looked after for all pregnancies.

May I ask you both what to expect of my first appointment? Do they advise that you stop trying for 3 months in between blood tests? As that fills me with anxiety 😟

@Haz1990 in the first appointment she went through all our history of trying, miscarriages and our previous failed ivfs. Then family history and our personal medical history.
Based on that bloods and requested scans. She gave me a prescription of progesterone too.
We got our bloods done the same day. We were told to avoid trying before the appointment which we did. Dr Agrawal told us that once I have the 3d ultrasound, we can try again while waiting for results and follow up. As we sent baby off too in my last miscarriage, she said that can take up to 6 months to come back.
so we'll start trying again and ring them soon as we have a positive result x

Hi. I've just come across your thread. I am glad you have been seen and your first appointment went well. I had a great experience with the recurrent miscarriage clinic in 2020. They found out I was actually pregnant aty first appointment so I never got any tests done but they did give me hormone treatment throughout my first trimester with my daughter.
I was wrongly told by my GP that a live birth automatically discharged me from their care and I'd have to have another three miscarriages before being referred again 😔 after two in December 22 I pretty forcibly demanded to be referred and I had scan with Dr shillito during my most recent pregnancy which unfortunately ended in a 12 week loss in march. I was referred too late to get the hormone treatment again. Like you they have sent that baby off for testing and I am awaiting a follow-up appointment but I was told not to wait for that to try again if we felt ready which we do.
I feel like we are similar stages now so wanted to reach out and say hi. I don't know many people who have been through recurrent miscarriage so it's so good to have these forums to know we aren't alone xx

I'm nor referred to the same clinic, but I am due mu appointment elsewhere this month. What kind of questions did you guys ask at your appointment? What kind of tests did they do? I have no idea what to expect

@LG24 Hi, thanks for reaching out. I am sorry for your losses. I do find you have to fight for your rights which is so sad. I am so glad now I am in the system as it felt like she finally listened. I am now on hydroxychloroquine and progesterone suppositories. Just keeping my fingers crossed.

@BudgetBuster I made a list of my history so far, complications that had happened. I asked what she thought might be the cause. They will usually ask about your periods, any difficulties getting pregnant, family history etc

We asked about supplements or additional medication which may help as I had read about progesterone being used in those with bleeding in pregnancy and previous miscarriages.
I had been told I had a arcuate uterus so I asked about further imaging as the sonographer during my miscarriage had mentioned a 3D ultrasound.

I had several bloods done from fertility referral including LH, FSH, progesterone, TFTs, Vitamin D. She added onto this clotting profile and autoimmune bloods to look into the possible rarer causes. We are still awaiting genetic testing from baby.

I would recommend reading few blogs and books, I read one by Chasing Dreams and 'Miscarriage, What every woman needs to know' just to give me an idea of what to ask.

@PB6 yes you do have to fight but I'm glad we have done and are getting treatment now. I got a positive test this morning so I rang them and they got me straight in to be fair, I can't fault them. I've started on the hormone injections again! I absolutely hate injecting myself but fingers crossed it's all worth it. I feel more reassured that at least I have help this time. First scan booked 3 weeks today and then they will scan me weekly 🤞🤞🤞
How are you getting on? Are you still waiting on test results or trying again now?

Hi @LG24

I hope you don’t mind me jumping in - firstly huge congratulations on your positive test and I send you all of the luck for a successful pregnancy 😊During my first appointment at the Leeds clinic (I have my follow up one next week) they mentioned that as I have already tried progesterone support, the next time I got pregnant I could try HCG injections, Gonasi 5000 - I hadn’t heard of them before and I wondered if this was the hormone support you are on too? If so, would I be able to ask you some questions about it?

I’m 9dpo today and am waiting a couple more days to test 🙏🏽 xx

Hi @Haz1990
Oh course you can jump in.
Yes that is what I am on. I had them during my pregnancy with my daughter too.
Ask away, I will help in anyway that I can 😁

@LG24 Thank you so much, that’s amazing to hear it helped you to have a successful pregnancy with your daughter!

I’m a little worried that taking it will mask a miscarriage.. I’ve had a MMC on progesterone before and I wonder if this could potentially do the same? I also find that checking my line progression on pregnancy tests really helps my anxiety (I’ve also had a few chemical pregnancies where the lines disappeared a few days later).. I’m assuming with the injection it’ll falsely elevate your levels, making tests a bit redundant? The thought of not knowing until a scan a few weeks later scares the heck out of me 😅

I also wondered how often you have to inject and do they give it to you to take at home? I’m in York and getting to Leeds often might be a bit tricky!

xxx

@Haz1990 yes I have the same fears. I have also had three chemicals, two 6/7 week losses and one MMC where I had a D&C at 13 weeks.
I asked of it would 'prolong' a chemical and I got a pretty vague answer of 'maybe, maybe not but ultimately it's better to try something than nothing' they told me to carry on with the injections even if I bleed and if it's heavy to call them. I think with the injections they only work if you start them really early. Hcg is a growth hormone and during my MMC they saw me at 7 weeks and baby was already behind on growth (only sac and yolk sac predicted measurement of 5 weeks) and it was too late to start the injections so my thinking is I would rather mask an unviable pregnancy for a week or two than lose another potentially healthy baby. I'm not saying the injections definitely would have stopped that slow growth but we will never know I guess. They have booked me in for a scan at 6 weeks so not too long to wait in the unknown, I am just going to try to distract myself as much as possible.

I am also a serial tester and totally agree, it's horrible not being able to track the line progression but actually with my daughter I think it helped a bit. I was tempted to test but knew it wouldn't tell me anything so it stopped me obsessing about it. With my MMC I got a 'dye-stealer' the day of my missed period and it still ended in loss so I'm trying not to read into the lines too much.
I got a pretty strong 9dpo test so I'm just going to focus on that being positive for now. Totally get it's nerve wrecking without any sort of way to test but we can do it.

The injections themselves you administer them yourself at home twice a week. They give you all the stuff and a sharps bin for disposal. I am on a Monday and Thursday schedule now as I found out yesterday and they sent the prescription through to the pharmacy the same day. They come as a vial of powder and a syringe of fluid with two needles (photo attached). You use a large needle to add to fluid to the powder, mix it and redraw it into the syringe. Then swap to a small needle to inject. Two inches below and out from your belly button and alternative sides each time. I didn't see anyone in person yesterday, I just called and collected the prescription but with my daughter they did the first one for me and talked me through it all slowly, showing me each step. It's not fun but it's really not that bad. Last time I took them twice a week until 14 weeks. I think technically they told me until the end of my 12th week but my dates changed a bit with my scans so they just said to use them all up which was 14 weeks

During my pregnancy with my daughter they scanned me at 7 and 10 weeks. During my MMC I had weekly scans and I think they will see me weekly again this time, at least at first and hopefully everything will be okay and they won't need as many. What I really like about the clinic was they are always happy to do whatever they can to easey anxiety. They booked me the extra scans during my last pregnancy (MMC) as they knew I didn't want to wait more than a week and they are always at the end of the phone. Also if it's out of hours you can contact the acute unit if you are a recurrent miscarriage patient whereas normally you can't self refer with them and have to go via your GP.

Sorry for the essay!! Hopefully that's answered your questions but let me know if there are any more ☺️
When are you planning on testing? Fingers crossed for you x

@LG24 huge congratulations. I wish you all the best!
We are still waiting for baby's genetics but we have started trying again. It's hard as you want to stay optimistic. Problem for us has been it has taken 18 months for me to get pregnant first time and 6 months the 2nd time with failed IVFs in between. So just not sure. Also we have sort of said as I am 35 now, to review things at the 6 month mark and if we go for IVF again but almost puts a pressure on you.

I am so glad they have been receptive and sorted your meds and scan out straight away. To be honest the few interactions I've had with the recurrent miscarriage clinic have been so pleasant and almost finally feel someone cares and listens. Prior to this we have had not great experiences with GAU.

@Haz1990

The injections are really easy to give. My husband and I are medics so thats a different story but on a couple of occasions my Mum (a non medic) gave me them when I was trying alternate sites and she didn't have a problem.

Would definitely recommend alternating sites as it can get a bit sore at times depending on which meds you are injecting.

Wish you luck when you test!

@LG24 I'm so sorry to hear of your losses, I didn't want to skip past this in my reply. What a journey you have been on 🌷

I honestly can't thank you enough for your detailed reply. It's been hugely helpful in so many ways. I also got a 'die stealer' with my last pregnancy, which still ended in a loss so you're right, perhaps the fact you aren't able to obsess over lines is a good thing with the injections.

I must admit, I wasn't overly impressed with my first appointment at the Leeds clinic. We waited almost 6 months for our first appointment and were told our appt would be with Dr Shillito, however when we turned up it was with Dr Ibrahim, who mentioned she thought it was a telephone appt so there was clearly some error in communication (that along with the fact it was rearranged 5 times!) She seemed a bit muddled in her advise too and quite wishy-washy when I asked what testing was going to be done (I still don't know what they've actually tested for!) I've had a 2 month wait for my next appointment, which is on the 26th May so I don't have the highest of hopes.

One of the issues I've been having alongside pregnancy loss is spotting in my luteal phase and Dr Ibrahim did actually do an examination and was the first Dr to tell me I've got a cervical ectropion (fun) - so that's something at least. I've actually opted to have the private dEFT testing with Tommys at the clinic in Coventry too, so I'm hoping between the two I'll get some sort of answer.

It's reassuring to hear of your positive experience with the clinic and the extra scans are a huge bonus!

Thank you also @PB6 it's great to hear the injections are easy to administer. I actually don't feel too nervous about having them.. I'm at the point where I'd do anything to have a successful pregnancy so I'll take the needles any day!

I tested this morning at 10dpo and it was negative - the if it's still the same in a few days then I'm booking a holiday next month just after I have the biopsies for the dEFT testing as you can't be pregnant for that - so I'm actually looking forward to a break!

I'm also sorry to hear how tough your journey has been. When you don't fall pregnant quickly it can be so disheartening. This is now our 6th month of failed cycles following my last loss - which is nothing in comparison - and each month gets more and more difficult. I was able to take our baby in for genetic testing when I miscarried in November and I got a letter last week saying that there were no abnormalities detected but there is a further investigation for SNP array analysis (whatever that means). I really hope yours comes through soon.

xx

@PB6 I think I am waiting on baby genetics too. I did get one letter from pathology stating no abnormal cells but I'm not sure if that was the genetics or just the routines tests ordered by the GAU. Did you get anything like that?

Yes I've had mixed experiences with GAU. Some good and some have been horrific and actually quite traumatic but hopefully it will be better from now on 🤞

Fingers crossed for you trying again. Hopefully you catch quickly this time around. Sending positive thoughts your way

@Haz1990 that sounds so stressful. The first time I was referred I had to wait 13 weeks for my appointment but the second time they redeemed to the fertility clinic instead of recurrent miscarriage and I got a letter saying there was a 30 week wait.
When I got pregnant last time, my midwife recognised my name on the system and called me and bought my booking appointment forward to 6 weeks to make sure I was registered early with the hospital. She emailed recurrent miscarriage while I was there and they replied straight away and saw me a few days later for my first scan so I'm so grateful to that midwife. Obviously didn't work out but I'm glad she had my back. I really hope your follow up is a more helpful and reassuring appointment. I hate it when they are vague, it's already a hard enough time.

Definitely book the holiday!! I booked one 5 days after my d&c and we went a month later. It was the best thing we could have done. We had quality time together and forgot about all our stresses for a while. Great idea 🎉

@Haz1990 totally agree with the holiday. Sometimes you just need to get away from everything.

Its horrid each month isn't when you test. Just trying to stay positive as much as I can. Our miscarriage was in December so hopefully that means it won't be long before we get the results.
They said there no abnormal cells in the tissue when they look for cancers etc but really want to see what the genetics show.