April/May 2025

[MSS]

Hi nevergiveup how did it go? How u feeling today?

[Nevergiveup]

It was a very hard day but the service was nice. My parents and my partners mum went too so upsetting for all.
The hospital phoned the other day to say they have had to do an internal investigation due to my severe blood loss and look at what went wrong and how they could improve it in the future. I’m just waiting for the report from that.
Hope everything goes smoothly for you tomorrow and fingers crossed it’s good news but guard your heart and stand up for yourself. Get all the information you possibly can.
I will be thinking of you, let me know how you get on x

[Nevergiveup]

How did you get on today MSS? How are you feeling?

[MSS]

Hi nevergiveup they confirmed the miscarriage this time the fetal pole was hardly able to see properly. Last week when I spoke to my nurse I knew there was going to be no miracles. It just hurts i wished things were different and i still had this baby. The hospital were great i had my medicine and i asked if i could send the sac for testing they gave me containers and toilet panel to use. My back been hurting lot. I always end up having side effects i had really bad shivers couldn't get my words out. But I'm glad its out 10 weeks and 2 days it took. Three weeks of extra torture that was not needed. I have a follow up with my consultant this Wednesday. This breaks my heart to say but i really don't think i will ever be a mother don't matter how hard I try to convince myself next time it may be different i really don't think it will work for us. Just heart broken i have nothing to hold onto.

[MSS]

How U feeling after the service? It be interesting to see what they say in the report. Hope you get the answers you are looking for.

[Nevergiveup]

I’m sorry you had to go through all that, it’s really not nice and so gut wrenching the pain in your heart.
How did it happen because I normally get 2 lots of medication 48 hours apart and I have no side effects really after the first meds other than just feeling off. If your pregnancy has already come away that’s quick.
I’m glad you are able to send it off for testing, hopefully you get some answers and testing your other embryos will hopefully mean you don’t have to go through this again.
Have you asked about testing yet or just do that in your appointment? We need to probably book an appointment and get the information about testing. I want to have all the facts before making an informed decision after we’ve seen genetics.
We are just in limbo, waiting for collecting the ashes which will hopefully be Monday or Tuesday. It’s the worst possible week too with it being Mother’s Day tomorrow, like a bigger kick to you. My boy I had 2 years ago was the day before Mother’s Day both sides of our family went out together but I couldn’t face it so we stayed here and then our parents and siblings and family came here briefly afterwards. This year this week it’s his 2nd birthday and our daughter’s funeral on the same week as Mother’s Day. I’m just trying to get through it and put a brave face on which you will be fully aware how I’m feeling.
Are you still having pains or has it settled down for you now?

[MSS]

I know had one sets of medicine 4 tablets and its lasted about 5/6 hours. I couldn't cope with having the meds again in after 48 hours that must be very painful. Im just hoping there nothing left behind like last time and had to have surgery aswel. Im
Gone ask him about testing them on wed and get a cost too.

My cramps have settled down now and the back ache is better than yesterday. Mothers day must be hard. I know when i allowed my self to think i ahead i though next year i can celebrate this too.

[Nevergiveup]

4 tablets, that seems a lot in one go. I don’t get 4, unless they just do them in different doses. How long did you have to stay in hospital? Were you there the full time or did you go home to pass everything?
I only had my chemical at home, my other 3 I had in hospital.
Tomorrow will be mixed emotions. I’m going to try and focus on being present for my kids and try and enjoy it but I will try thinking about the what if’s for my losses too.
My eldest came home with something on Thursday for me but was hiding it on the way home so not sure what it is.
If you find out information about pgt testing can you let me know because I don’t really know anything other than the general idea and that there’s a change of inaccuracy and can’t actually get a result. I’ve always been against testing but this loss has changed my opinion, I can’t risk my life but equally this baby was genetically perfect

[MSS]

Im sure i ways have had 4 tablets. I stayed in hospital for 15 minutes and then went home. I passed everything at home. My partner went in the evening to drop the container off for testing.

I totally agree with what you’re saying. Your losses will stay with you forever and you will have low days too. Some days thinking if it had worked how life would have been. Which is fine and to be expected. But don't forget to enjoy your time with your two babies and make memorise. Time flies byes so quick we don't realise.

Like you i feel i have no choice but to get them tested and this will be my second time getting them tested. Having them tested wont guarantee me a baby its just takes away the heart ache of the risk it the embryo has anything wrong with it.

[Nevergiveup]

Gosh it just shows how different the treatment is from hospital to hospital. I have always had 1-2 tablets but I’ve always had to stay an hour after having them to make sure I’m not sick, although this last time I was told I could leave 5-10 minutes early at a push because she wasn’t as strict on the timing but we had to get told we could go and in the end we didn’t leave early because the nurse was with someone else.
For my second tablets that go vaginally I had to be admitted twice onto a ward because of them being over 15 weeks so you have to do that in hospital but the middle one at 10.5 weeks I had to stay an hour again but started bleeding within that hour and passed the pregnancy sac in EPU but then passed more tissue at home a couple of hours later when the contractions started.
How are you feeling now after a couple of days?
I had a nice hot bath last night and just thought I shouldn’t be doing this, I should be having a slightly warm shower feeling my little baby wriggling around growing nicely. Life can be so cruel sometimes, it’s hard to have continuous heartache with loss after loss, knowing when you should stop trying even though it’s something you, your partner and kids want so badly but seems so far away.
I haven’t had any appointment from genetics yet but was told to expect around April so would have thought we would have heard by now really

[MSS]

Surprised they are. As mine was 4 vaginally.
We had our appointment with the consultant and we told him we want to go down the line of having the embryos tested. He said he will get the admin team to send a price over. He also mentioned he will slightly change the protocol for next transfer too. I will have to wait and see what happens next.

I ended up with a urine infection had to go back to epu and waited 8 hours. They have given me antibiotics and taken a swab too. Hoping the infection clears up.

[MSS]

When i had my scan at EPU they said they was able to see a fibroid i forgot to mention this to my consultant not sure if this will effect my next cycle. When i asked the lady who scanned me she said it was small and she was not concerned.

[Nevergiveup]

That’s rubbish about your infection, just what you needed. Hope it’s cleared up for you now.
We still haven’t contacted care about embryo testing atm because I’ve not been feeling the best with it all, been more upset, tired etc because of the funeral and that.
When you’ve had the embryos frozen do you have to pay a general thaw and refreeze fee or is it per embryo? What are the costs?
I have a fibroid, it’s tiny though about 1-2cm (which grows when I’m pregnant) but I’ve had 2 healthy babies with it. Depending on the size and where it is you will be fine without removing it.
How are you feeling now with everything?

[MSS]

Hi nevergiveup how are you? I think it’s clearing up. Im still spotting gone be two weeks tomorrow. Im up and down still have moments where i just want to cry.
Pgt testing care are charging £1375.00 to do the biopsy and then to send it off, for testing is £390 each embryo lot of money. No guarantees but we will be going down that road as i cannot put myself through this again. Even thou it can still happen with pgt tested embryo.

[Nevergiveup]

I know what you mean about a bit of a cry now and then, it’s just so sad isn’t it.
I still haven’t heard from material mental health or received anything from the ward with the internal investigation they said they had to do and that I’d have a copy of the report within a few days, that seems like ages ago they said that. We also haven’t had anything from the genetics so chased that with fetal medicine because we can’t have the appointment with them until we’ve seen genetics I don’t think. We have heard from recurrent miscarriage clinic and that appointment is the end of May but it’s with a nurse, not even the consultant like last time.
I contacted care today and got an appointment with my consultant in 3.5 weeks to go through pgt a testing and what she recommends and costs, they wouldn’t even estimate until I spoke with the consultant and then they sent a price apparently.
I’m still in this waiting game where we have been referred to multiple departments but no one gets back or they say they’ll do something but it doesn’t get done

[MSS]

Hi nevergiveup how are you? How your easter break been? Im okay waiting on the embryo results from the pgt testing. They only manager to get biopsy of 3 out of the 6 i had. Im praying i get at least 2 normal ones.

Can U chase the hospital up on the report?

[Nevergiveup]

Hi MSS, good to hear from you. How come they could only test half? What happened to the other 3? Why weren’t they able to test those?

I’m still waiting for referrals and the hospital report, the bereavement admin lady chased that on 26th march and I was told to expect a call the following day (Fri) or the Monday. She said she was off last week but if I’ve heard nothing then to get in touch with her again at the start of this week but was bank holiday Monday and we’ve been out with the kids today so not contacted her yet.

We had chased the genetics and she contacted us last week but we were out so she called the next day I think. We had an hour appointment where we gave all our history with kids and miscarriages and then general health and family history for heart problems, strokes etc. she has to write it all up and pass it on to be discussed with drs. That discussion is supposed to happen this week I believe but she’s off so it will be another week before she comes back to us because she has to discuss with someone else first I think.

We have our care consultation on 23rd I think where we should be discussing everything and pgt a testing too. We should know from genetics by then too so can take that information to the consultant too.

I’m still not sleeping well and still nothing from maternal mental health.

How are you getting on/feeling? When do you get the pgt results?

[MSS]

Hi nevergiveup they thawed the 6 only 3 survived hoping to have results next week. I have app with consultant on 22 April. I been having orange colour discharge for last 5 days i called up epu and they said to speak to my doctors as I may have infection. I have app booked for Friday. Hoping its not infection just my body trying to go back to normal.

You not sleeping is this due to you not switching off. I went through this just needed to let it all out to my partner. He doesn't like talking about his feeling which makes it hard. Have you tried writing down how you feel?

Im so surprised they have not got back to you as mental health is effected so much during ivf then on top when you miscarry makes it even harder. That was the reason i pushed myself to go to work i could feel i was going into depression as all I wanted to do was stay in bed and not communicate with anyone.

I still have days were i wished things were different and I was pregnant. I would do anything just to have my own baby.

[Nevergiveup]

Hi MSS
How are you getting on? Have you had your pgt a results yet? How did your consultant appointment today go?

We had a call yesterday from the genetics department and they have looked at our situation and full medical history and also close family history too and can’t find anything that links the miscarriages and can’t see why we wouldn’t be able to have a successful pregnancy in the future. Although did say they can’t say why I actually miscarried last time.

I still haven’t heard from material mental health and the genetics woman is chasing that.

We haven’t received the hospital reports from their internal investigation yet either even though they have promised it a couple of times now.

We are having our consultation tomorrow with care. I was definitely going to do pgt a testing but speaking with the genetics woman she said that it’s still unclear how useful it is because if there’s a mosaic chromosome error this can right itself and also put the faulty cells in the placenta rather than baby meaning both situations could lead to a healthy baby. I think I’m still pushing more towards doing it but we need to have a chat before this meeting tomorrow to know what we are doing.

Did you get your infection cleared up? Are you having more good days than bad?

[MSS]

Hi nevergiveup I'm doing okay. How are you? We got our results we have one normal embryo, one came back with no results other two could not be used. We shall start with Junes period next transfer.

Im glad you hear back from the generic department. I know they cant say why you miscarried but good to hear they cant see why you cant have a successful pregnancy. Some thing to take on board hope it helps.

How did your app go with care?

[Nevergiveup]

That’s good news that you have a perfect one and another that you could potentially use.

Our care appointment was ok, we are doing the pgt a next week and I have a drs appointment tomorrow to try and get a couple of blood tests done that they want.

We have 4 embryos so they think 1-2 might be ok. How many did you have in total? I’m sure you had loads, did some just not survive the thawing process and have you had that before?

Are you pleased with your results?

[Nevergiveup]

Hi MSS

How are you getting on? Have you got everything in place for your transfer?

We had our embryos thawed yesterday. They were only able to test 3 out of the 4. Obviously I’d like all of them to be genetically perfect but realistically the odds are 1-2. I want 2 really or 3. I think I’ll be disappointed with 1 and gutted if there’s none.

How many blastocyst did you have originally? I know you said you had 4 tested.

Is your protocol different next time?

[MSS]

Hi nevrgiveup how are you? Have you had your results back? Im looking at starting my meds in June cycle. I had a total of 8 embryos. My consultant has changed my protcol is bit confusing i have a nurse app on Thursday to go through to make sense.

How you been?

[Nevergiveup]

Hi MSS
I’m doing ok, still not heard anything from maternal mental health or fetal medicine. I had my letter from the hospital admitting they did wrong by not putting a cannula in and have changed the protocol for everyone going in for medical management. I’ve also had more blood tests that my care consultant requested like diabetes and thyroid antibodies or something and had a general full blood count and everything came back normal.
We have our appointment with the recurrent miscarriage clinic on Wednesday and have been referred to Tommy’s to see if they can suggest anything else.
We had a phone call on Thursday I think to say that 2 out of the 3 were ok and 1 not. I asked if it was a full chromosome issue or mosaic etc and the embryologist wouldn’t answer, just said I had to speak with my consultant on 18th June. I contacted care to see if this could be moved sooner because they said they couldn’t book for 6 weeks because it was taking that long for results but it took about 2 weeks in the end I think.

How did your nurse appointment go? What have you got to do for this protocol? How are you feeling about it all?

I couldn’t sleep the other night, just kept thinking about if we should try or not because I’m so scared of things going wrong again and dying. I was so ill last time I don’t want to go through that again

[MSS]

Hi nevegiveup

That great news you had 3 embryos come back as good. Have you discussed with your partner how you feel? Being scared is understandable you went through so much and it sounds very scary.

With my protocol they getting me to use a small dose of stims meds to help the lining. My thyroid came back low so im waiting to see what my consultant says if i can start or not. Not sure yet.