April/May 2025

[Nevergiveup]

I never miscarry naturally, I’ve waited 3 plus weeks before and it’s just too much mentally to prolong the agony and then last time especially I was scared of going out incase I miscarried whilst out so just stayed at home the whole time. I still had the heartburn after I had my little girl in December for a few weeks, not as bad but still enough to take my meds until after Christmas.
The funeral is in 3 weeks. I’m becoming more upset atm with thinking about it and planning more details. We will get one of the ‘birth’ certificates in her name for baby loss, are you doing that?
I think we will do the pgt-a testing but will wait until after we have seen the genetics specialist but my recovery is supposed to take 6 months and I want to try and lose some weight because all the ivf meds and this operation and recovery has made me put weight on.
When it happened in Dec my feeling was I didn’t want to do it again because I couldn’t risk my life but now I’m thinking of testing them so I can rule out ones which wouldn’t work so it’s less risky. I did say no collection but we’ve paid for it and would I regret not trying I don’t know. I really want a baby but loosing 4 in 2 years is a lot and I’m 40 in the summer so don’t have long to carry on doing ivf realistically.
I think I looked on care and it’s over £3k for 4 embryos. Do you know how much it is?
My care clinic won’t do blood tests and once you get a scan they pass you onto your local gynaecology department at the hospital if it’s bad news and to the drs for a midwife if there’s a heartbeat. They say they are an ivf clinic not an early pregnancy unit so can’t help but sounds like your clinic is supporting you.
Hope everything goes smoothly tomorrow for you x

[MSS]

My bloods have come back 14,250 its had gone up from 5,690 in a week how can that be. So heart breaking seeing the numbers high when have had a miscarriage. I contacted the EPU got app tomorrow at 3.30 bit annoyed with myself should have contacted them on Friday. As its empty scan they will make me come back for a second scan as this is there guideline's, same happened in 2023.

I dont blame you for changing your mind wanting to do another egg collection especially when U have paid for this. I will ask for a price on the pgt testing too.

[Nevergiveup]

Wow that’s a big rise in hcg. I had a suboptimal rise with my miscarriage in July but it was only like 2000-3000 level but that was about 6 weeks I think and then they never tested again.
I had to be scanned by EPU even though care had scanned a day before. They say it’s for their records etc but it’s another process that you wish you didn’t have to go through. Each time I’ve always had to go back for medication too because they have to plan it around appointments and staff etc.
How are you and your partner coping? It’s hard to go through isn’t it and it brings back previous miscarriages too which makes it worse.
I hope you aren’t having to wait around for ages tomorrow and it’s not too bad for you. Take care and let me know how you get on, I will be thinking about you. Sending hugs x

[MSS]

They said due to the sac being small i have to come back in 10 days minimum and rescan. I just cant believe I have to go back. Surly ivf miscarriage should have a different procedure. To go through this yhe scan third time is heart breaking. Im Just so heart broken i feel im drifting away from partner. He aint talking a lot and i want to talk. Just so broken wished this has worked for me.

[Nevergiveup]

Oh MSS that’s horrible. It does feel so inhumane to have the torture of prolonging it. 2 weeks nearly is such a long time to wait if the sac is empty and they should be seeing something by now. The thing with ivf you know exactly when conception is so it’s not like natural when dates can be wrong. It’s annoying because they follow their procedures but they don’t adapt them for ivf

I know what you mean about how you handle it differently to your partner, my situation is the same. They seem to deal with it easier and ‘not care’ I had to remind myself that it’s different for us because it’s in us and we feel the hormones and have to go through the loss physically and mentally. It’s the checking every time you go to the toilet if the miscarriage is starting or just the slap in the face when you go to the toilet every time for weeks whilst you still bleed. It’s just a constant reminder many times a day whereas they get stuck into work or playing games on phones etc. we have to go through the periods being messed up and cycles all over the place for months and have to have hormones adjust when you are off meds and having the miscarriage. You are not alone and not feeling anything different to what I am. Honestly feel free to message if you want to talk or rant because I know exactly how you feel unfortunately.
Maybe say to you partner that you are struggling because although your partner is mentally going through it you are physically too and it’s difficult so it would help if you could talk about it or if x,y or z.
Do they think things might happen naturally before your next scan? I don’t miscarry naturally within weeks though, it’s like my body clings onto the baby

[MSS]

This has to change this is not fair on women who go through ivf have a miscarriage ant then have to follow the same procedure as normal pregnancy.

I know i wont bleed naturally im just hoping on the 6 march she said i can have the meds in the afternoon that they stick to this plan. As some nurses and doctors say No and i don't want to be going back again. That place has all the bad memories for me.

The nurse mentioned to me if i wanted to be referred to the miscarriage clinic as this is the third time. I said no at the time as i thought it would be waste of time. What do you think?

[Nevergiveup]

We chose to go to the recurrent miscarriage appointment because we thought that any help no matter what it was would better than nothing at all. I did speak to the nurse when I got the appointment to see what they would do and she said it’d be blood tests really. I explained I had many blood tests with care and she said it’d realistically be the same ones but up to date rather than 2 years ago. Our consultant was extremely bad though because I was already pregnant and suffering really badly with heartburn in the Nov. I was told well your pregnant now so that’s good and you could have medication but it’s best not to so just put up with it. Hopefully you would get someone better (you can’t get worse). The gynae consult I had when I had my girl in Dec referred me again to the same miscarriage consultant but I’ve got an appointment for a nurse this time, who knows what will happen this time but that appointment is end May.
What helped us is having cytogenetic testing from both of my second trimester miscarriages and also the one in July when I had my empty sac. I did have a fetal pole and then it disappeared and became an empty sac. I was about 9.5-10 weeks when I had my second medication and I wanted to have it naturally at home but didn’t happen so took meds after 10 days or so and started bleeding within the hour when they make you lie down there. Anyway after a bit I passed the pregnancy sac and it looked like a little marble. I asked if it could be sent away for testing because then it was my 3rd miscarriage and explained I had testing done previously on my second trimester miscarriage. She agreed but said she didn’t think that they would get any information from it. Anyway they did, even though it was an empty sac which actually helped with knowing why I was miscarrying. I’ve had 3 of the 4 miscarriages tested, 1 was a chemical so lost before a scan. I had an Edwards mosaic pregnancy, trisomy 22 and last one was genetically consistent with normal female pregnancy. The first 2 showed that there was something wrong with the embryos but my little girl was perfect so this creates another problem for us which is why did I miscarry and if the miscarriage consultant did his job properly and did blood tests then would have have a different outcome?
Personally I would have the appointment even if it’s a waste of time at least you know you have tried everything possible to avoid going through the same thing and testing the baby/sac might show there was a problem genetically. I think this is why they suggested me testing embryos because although there’s an error rate and I’ve always been really against it actually if you keep having miscarriages with chromosomes errors then if they pick those up it can potentially save you going through another miscarriage. It’s a lot of money though but I nearly died in Dec so I don’t want to take unnecessary risks. The miscarriage consultant said I can carry a baby full term and get pregnant but if it’s chromosomes aren’t normal then that’s the reason, no blood tests are needed whereas this time baby was good so maybe I need blood tests it would make sense but I had a lot in Dec and everything came back good.
Why can’t we just get some luck and have a healthy baby. You see kids that aren’t looked after, parents smoking drinking and drug and they get pregnant but why can’t we when we do everything to look after ourselves and will look after it and love it. It does frustrate me. The people over the road have just had another baby and the 2 kids they have they don’t take them to school on time any day or have uniform and the school is literally 2-3 minutes walk

[MSS]

Thanks you for all that information i see what your saying. It will be worth being referred. Usually i have the medication at the hospital and then go home and the process starts. Will i have to stay in hospital would they keep the sac? Sorry i don't know how it works? I just wonder how they would test?

I know what you mean some people have the blessing and don't appreciate it.

I think this time round im really struggling im forcing myself to go to work as i don't want to just want to stay home on my own. Trying my hardest not to go into the dark hole.

[Nevergiveup]

When I have had testing done before I’ve always been at the hospital. After 15 weeks pregnant you have to be anyway and 2 of mine were. The one at 9.5-10 weeks with the empty sac I was just in a side room in gynae walk ins/appointments so basically an A&E for gynae which was not ideal so not admitted that time. I did speak about testing if I went home and they said to put it in a clean container so like a washed butter tub or Tupperware tub. Looking on the internet it was saying it would be a grey tissue to look for but actually I would have missed it because it looked nothing like that, it was probably a 2cm marble with liquid in. It came out on a pad and the nurse checked and said that I’d passed the pregnancy sac. I asked to look at it and she showed me. She then took it away and completed forms and it gets sent off to cytogenetics, my closest is Nottingham. It takes about 12 weeks min but mine was 14-15 weeks I think.

I was too scared to leave the house fearing that at any moment I’d have a massive gush. It happened like that when I was having my first miscarriage but I was about 16-17 weeks pregnant and baby was the length of my hand. I literally started bleeding and the nurse took me off the bed to the toilet and I passed baby in his sac and placenta all at once. It filled with cardboard insert they put in the toilet. It traumatised me because I didn’t know what to expect and I didn’t want him on the toilet but they get you to because gravity and that position helps. After that I’ve refused to go to the toilet to do it.

If you stay in hospital every time you go to the toilet or change your pad they have to check you have passed everything when you are admitted. I’m not sure if you can get admitted before 15 weeks, just know you have to after. When you go to the toilet you have to go in a cardboard insert and buzz them and they take it away but you have to put all tissue in there too. If you were at home then there’s obviously a risk you wouldn’t get the pregnancy tissue to be able to test but obviously you are comfortable in your own surroundings. It’s not nice going through it anywhere but if you are slightly worried then being in hospital you have someone there. I wouldn’t be here now if I was at home in Dec but again I was a couple of days off being 18 weeks so baby was a lot bigger and the placenta bigger etc.

Does your work know your situation? I think I’d be working at home and not risking it so good for you going in. It is such a difficult time isn’t it so look after yourself

[Nevergiveup]

Hi MSS

How are you holding up? Has anything started yet or have you been seen again?

[MSS]

Hi Nevergiveup sorry for not checking in. Its been hard week trying to come to terms with all this. I went for my scan today and she said they can see a fetal pole which has not been there on the last two scans. I explained to her to it cannot happen as its IVF pregnancy. But they said i had to wait another week to be rescanned. I spoke to care they scanned me and saw the same and i had my bloods taken again. They said not to get my hopes high. I need to start the pessaries again. I just don't know what to expect next week. Its going to be living the nightmare all again if they say the outcome is the same. I really struggled this time around.

How are you? What date is the funeral?

[Nevergiveup]

Wow that was not what you expected. Surely they know that you would be dating really far behind now though so although they have seen more being behind would still not be good. It’s good they are testing your hcg and double checking with a scan but like you say are they getting your hopes up to go through the same thing. This is how I was in May-July where hcg wasn’t going up how it should and then they found a fetal pole etc. it just prolonged the situation for me.
How do you feel about it all?

The funeral is Wednesday and we are going to write a note or letter to her and put that in her coffin with her so will go and sit with her before Wednesday for a few minutes just to be in the same room with her as we haven’t actually had that since having her. They advised not seeing her because of the surgery so we want to spend time with her before her funeral, even though we won’t be able to see her. We did the same 2 years ago with our boy. It’s 2 years on Monday since I had him so it’s going to be a really bad week for me next week

[MSS]

I dont know how to feel what to think. Im measuring 6 weeks and cant remember how many days. I should be 9 weeks and 2 days.

Aaww next week will be hard one for you. Have yiu started your letter. It be nice to say goodbye in your own way.

[Nevergiveup]

I remember being told that being more than a week behind at that sort of stage is a bad sign so guard your heart. It’s good that they have seen more but equally if everything is going really slowly then it’s just making it harder for you in the long run. You are just constantly in limbo aren’t you. I really hope there’s a miracle and there’s a big difference in size for you though.

I’ve drafted my letter today, it’s short and sweet but I’m not writing it up just yet because I want to sit on it until later or tomorrow just to make sure I’m totally happy with it.

I’ve been upset today because of writing the letter and then my kids want to do something tomorrow because it’s 2 years since I had my boy so it’s his ‘birthday’

[MSS]

Hi nevegiveup that must have been hard putting it down on paper. I had my bloods back at its gone up to 26,098 what do i make out of this honestly i don't know and am so scared. Im desperate for a miracle.

[MSS]

Also they asked me to start my pessaries again 2 in the morning anf 2 at night that 1600g im just but worried what it that is too much.

[Nevergiveup]

Yes it was difficult to find the right words but nothing I can write is going to be enough to be honest, she’s my daughter and this just shouldn’t happen so what can I put to tell her how much she means because words aren’t enough.

Did you say your last results were about 14500 2 weeks ago? What were your results on what date?
If it is it’s gone from doubling every week to doubling every 2 weeks which is a suboptimal increase so why would they tell you to restart your meds? I got told in June at a faster hcg rate I would miscarry. I totally understand restarting if the hcg was doubling faster but it’s supposed to every 2 days so even every 4 is twice that. When are they scanning you again?

How is your partner reacting to it all? Are you speaking about it or just heads all over the place and going with what they say at each appointment?

[MSS]

On the 10 feb it was 2845
12 feb 4249
20 feb 14,250
6 march 26,098

[MSS]

We’re taking in what they saying coming home crying my eyes out. I just dont know what to think. Scan with EPU this Friday but they dint understand ivf pregnancies, when she first said it i cried said it cant be its ivf pregnancy but she said carried on reassuring me that its a good sign and she can not disregard what she had seen. She got second opinion too. I did apologise to her that i didn't mean to question what she was saying . How do i tell my heart not to have hope. My partner is struggling he is not a big talker when it comes to his feelings. He doesn't understand if Friday is bad news i will have to relive all those emotions again.

[Nevergiveup]

This is very true, EPU do not treat ivf pregnancies differently. They work on their dates even though you know exact dates and my care clinic just said ignore their dates because they are wrong and that at 12 weeks you just go with that although they were at most 2 days out with all my pregnancies I think.
I tried to work out what your hcg should be with doubling every 2 days which I’m sure you have and it looks like it’s slowing down but they said to me that once they see a fetal pole they no longer rely on hcg levels because it’s not reliable, this last time. Yet in June they relied on hcg levels after seeing a fetal pole to say they were suboptimal and I was miscarrying.
Let’s hope on Friday they see a big difference and all this is worth while and the scans are good but looking at the hcg alone it probably looks like early miscarriage unfortunately.
Did they say it’s really positive and start meds because it looks like it’s good or that they just don’t know at this stage but to take meds just in case there’s a chance? Could you read between the lines or not? It’s going to be a long week for you.
I’m dreading this week. I’ve added a few extra words last night so will write my note to my little girl after I’m back from the school run

[MSS]

Hope you got on okay with your letter xx

I spoke with my nurse who originally did the scan on 20 feb she told me the same that i wont get the outcome I'm hoping for. I told her the consultant had put me on 2 pessaries am and 2 PM. Having to put them in together i am getting lot of side effects she said just to go back to the 1 am and 1pm. I think i need to stop believing that this will turn into a miracle i just wishes if its gone end the same way that they did not awe the fetal. I could have had the medicine by then too. I wish this had a different outcome

[Nevergiveup]

I had to do pesseries 3 times a day and gel twice so I know what you mean with side effects. No amount of pesseries are going to make it work though so reducing to 1 is better for you but equally you know you are giving it a go with using them to please EPU.
The letter went well and we spent 30 minutes with our daughter earlier for the first and only time. It’s different this time because last time we got to be with him in hospital and hold him and take photos and got his hand print whereas this time we were advised not to see her because of the surgery so being with her was hard because we put our hands on her coffin and she was so close but equally so far away. I’ve cried so much today I’ve given myself a headache and fell asleep after see on the sofa while the kids sat with me watching a film.
It also 2 years today since I had my little boy, that’s gone so fast. At the funeral home the man asked if we’d been before because he recognised us, that’s bad that you get recognised at a funeral home.
Guard yourself and if you do get bad news on Friday then do express that you have been living in limbo for so long now and you don’t want it dragging on for ages if that’s how you are still feeling. Does your work know your situation? Are they supportive? Do you have family/friends that know?

[MSS]

How U feeling about tomorrow? What time do u need to be there for?

Only two people at work know i like to keep private they been very supportive. Told my family when i miscarried not the news I wanted to tell them. Its very hard talking to someone who has not gone through ivf i don't feel they fully understand.

Have U heard back from your nurse?

[Nevergiveup]

I’m not looking forward to tomorrow. Obviously don’t want to be at my child’s funeral, I’d rather have her happy and healthy but it’s not an option.

What nurse do you mean? The care one? I haven’t heard from care since my loss weeks ago.

Yes on people who have gone through ivf totally get it but equally the lucky ones that get their babies after 1 or 2 rounds don’t get our sort of journey and only unlucky ones get the miscarriage side or multiple miscarriages.

Are you having any pregnancy symptoms?

[MSS]

I will be thinking of u tomorrow. When i found out i was pregnant used to get dizzy spells everyday in the morning now nothing.