Immune/NK cells pred thread #34

@MC8 Thinking of you today 😘 I was referred to councilling after my ectopic and it really was invaluable 💓

@Gems2811 Its so hard isn't it, I sort of feel its all a bit trial and error what they give us... I'd love to split myself and trial different drugs and quantities to see what was actually needed 😅

@Hopeandfaith1990 You poor thing, that must have felt an eternity 💞 At least you know its all good now and its a fresh new start 💪🤗

@Jecca88 @Fletchasketch Really really delighted with your news 💗 One more step in the right direction!

My news, I've just had my 2nd negative. I'm amazed how triggering I still find it. That avalanche of emotions when you see the white screen, doesn't get any easier. I still resent having to go through a 'process'... what it must be like to dtd and get a positive test like 'a normal person'....! Anyway, onwards and upwards, at least I can come off the pred! Much love to you all 🥰

@Fletchasketch glad you had a good scan and everything is progressing. Did they say how long the NIPT results take? Do they just send them to you?

good news day for me too - all good on my scan today! Quite a relief and baby is measuring bang on 7.2 - going back next week for the 8 week scan and intralipids. She did notice the subchorionic bump - she didn’t seem massively concerned and said there is nothing we can do but monitor it. I love Dr Edge, she really is the loveliest and just puts you at ease. I feel so confident with her. She has given me some drugs as a precaution incase I get cramps - basically they use it to stop preterm labour and since this bump is in the womb it can sometimes cause cramps and expel it the pregnancy.

@Jecca88 thank you. Hopefully today is a 'good news' day as all looking good at my scan- measuring 11w4. Just need to wait for those NIPT results now and then I might be able to believe we're having a baby.

Wishing you all the luck in the world for your scan later.

@MC8 glad they agreed to the surgery and that you don't have much longer to wait. Will be thinking of you tomorrow, hope it goes as well as it can.

@Hopeandfaith1990 thank you for your good wishes, very pleased to hear your biopsy results were positive. Onwards and upwards for the next stage.

@Gems2811 thank you so much. Hope you're doing okay. Agree with others, it is utterly overwhelming trying to work out which tests are worthwhile.

@Gems2811 sorry darling u are going through this again…did u not take meds the whole pregnancy? How far where u when miscarried? U did all u could do…we all want our babies and going through all this is unbelievably painful…my heart goes to u!❤️

@Hopeandfaith1990 I am OK dear! How are you doing? ❤️
@MC8 I heard of Petals…they are good…I am doing therapy myself through NHS…it helps…I hope you are ok? As OK u can be in this difficult time …❤️‍🩹

such a relief @Hopeandfaith1990 glad results are back in and you're moving forward with the next transfer.

Thanks @Gems2811 my scan isn't till 4.30pm so have to wait all day :( Ahh so you did IVF - which is what i did but got pregnant after egg collection. I take both pred and hydroxy. i really hope you get some answers on genetics. When is your D&C? did you get your embryos pgta tested? I also did IVF at Kings. After the Lap - has the endo been resolved? sorry loads of questions. sending lots of love.

@MC8 i am so glad they have recommended Petals, annoying that you have to complain - and it isn't standard. Will be thinking of you tomorrow hun - so sorry your husband is home till friday.

@Fletchasketch good luck today - my appointment isn't until 4.30.

Oh my goodness @Hopeandfaith1990 that would have been an unimaginably stressful 2.5 weeks, your poor thing! Best of luck with your baseline scan and transfer xx

Sending the most positive thoughts and @Jecca88 and @Fletchasketch

@MC8 that's good they've given you a date, I hope the weekend wasn't too painful or distressing. I'll be thinking of you tomorrow. I haven't heard of Petals and never be ashamed of having a meltdown, I think it's perfectly expected with the hormones, the emotions and the shock, especially when you've been through so much already. It's being at the hospital which sets me off too, due to the box ticking, and my EPU is right next to the labour ward and so I had to listen to a woman in labour while I was waiting to have my surgical discussion and it just brought everything back up which I've been dealing okay with at home.

I've always had symptoms of painful intercourse with bleeding and excruiating ovulation pain since I was a teenager, but not really ever abnormally painful periods, which is why I think my other symptoms have always been ruled out for endo, despite me asking many many times over the years. But the cycle before I was due to start IVF at Kings I ended up at A&E with 10/10 ovulation pain again which I was worried might be an ovarian torsion and I thought this just can't be normal to happen numerous times despite what I keep being told and so I did the Endosure test and booked myself in with an Endo specialist and he said, 100% you have endo from those symptoms and sure enough my laproscopy came back with rectovaginal endo and mild adenomyosis. I just wish I'd known sooner...😪

@Jecca88 Thanks so much for checking in, I’m going for surgery on Wednesday. EPU called back late Saturday afternoon, and I’m ashamed I had a bit of a meltdown as they didn’t offer any reassurance or advice, only that they were still waiting to hear if consultants would approve surgery as according to them the ‘risks outweigh the benefits’. I get they have guidelines etc, but their clinical-box-ticking approach has been so frustrating and really doesn’t put patients first.

Anyway, this morning they called back with a date, which I’m relieved about, thankfully not long to go. Although I’m feeling quite crampy and it’s been getting heavier daily so still hoping I hold out. Been taking 400mg progesterone (utrogestan) and wondering if I should up the dose - wish I’d thought to ask about it earlier, although I’m in tomorrow morning for pre-op bloods etc. so let’s see.

Oh also forgot to mention, after I complained about the Dr’s comments they referred me to Petals for counselling. I hadn’t heard of them before, has anyone else had it? I am grateful for the referral, but also wondered why they’d never thought to mention it to me before, feels like it was triggered by the comments rather than my history which is a bit disappointing. But I’ll take them up on it nevertheless.

How are you doing? You and @Fletchasketch will be in my thoughts tomorrow.

@Gems2811 hope you're holding out ok? I agree it's so hard to know where to focus energies on diagnostics, it feels sensible to focus on one area at a time before exploring others, it all takes time (and money!). I have borderline NK and high cytokines, and although CRP has said there are more things they could do for me on the immune side, if testing comes back normal again on this one I'm thinking of looking at other tests outside of that as well - possible womb lining, microbiome. It's great you have embryos banked. How was your endo diagnosed? Did you have symptoms?

xxx

I was with CRP until March this year and after 6 months of super ovulation nothing had happened and I found out I have pretty severe endometriosis. CRP wanted me to do another round with endo and I just felt that the endo needed addressing so I banked embryos and got a lap done and parked CRP. I was planning to do the whole protocol when I transferred but fell pregnant the first month after my lap. I was taking hydroxy, aspirin and progesterone but maybe I do need the Pred and intralipids too, or maybe it was genetic, so hard to know. The nhs are going to test the fetus thankfully, my nk cells have only ever been borderline and so it’s hard to know where to focus your energy and funds isn’t it @Jecca88 and as I’m new to the thread, I don’t know if others have had a few diagnoses going on concurrently? CRP had swapped Pred for hydroxy on my protocol cos I was having side effects from the Pred but it seems like some people take both rather than one or the other?

How is everything going @MC8 ??

@Gems2811 i am so sorry you're experiencing this. Have you been with the crp clinic this year? Have they said as to why this miscarriage might have happened? it could be due to immunity still? Did they prescrib you prednisolone?

@Jecca88 thanks for your reassurance on testing - yep I've got my tupperware ready! To be honest it is very light atm, hoping it stays that way until a plan is in place.@Gems2811 thank you, I called EPU and am waiting for a call back, feeling a bit calmer now - hope you're both holding up ok xxx

I’m so sorry you’re experiencing this @MC8 , I don’t have any info I’m sorry, but just wanted to say that I really hope your EPU can help if they’re open today and that I’ll be thinking of you xx

@MC8 my love I’m so sorry you’re going through this. I was given a Tupperware (I know it’s horrendous) but collect anything you can in terms of the blood loss and they can try and test it. This was always my worry when waiting for a D and C. I never actually did that but that’s why they advised me. I have had cytogenetics on 6 week, 8 week, 9 week losses so they can test a very small amount of pregnancy tissue. Sending you all the strength xx

Thank you, I did sleep ok and it’s not too bad. Thanks for the tip on Tooting too - it’s pretty far from me, but luckily my EPU does open from 9 on Saturdays, so will call then and see what they say. I just don’t expect them to come back on a decision on the surgery over the weekend… it feels like the worst possible outcome is happening at every stage but I’ve just got to deal with it now. xxx

@MC8 just so sorry you’re going through this. Most EPU’s won’t be open unfortunately, but if you can get to St George’s in Tooting they have a walk-in service from 8.30. I do hope the pain isn’t too bad and you can get some sleep.

Sorry me again, I’m panicking now as my cramps have got worse in the last couple of hours and now I’ve started bleeding, it seems like the progesterone isn’t going to hold it long enough. I’m wondering if I should call EPU in the morning and reconsider going for medical management? I feel I’m running out of options and this might be the only way to get cytogenetics, though it was confusing when I spoke to them - on one hand they suggested medical management because they could do it sooner than surgery, on the other hand the surgery itself is a problem because it’s so small.

@Gems2811 oh my gosh you’ve been through so much, I’m so sorry. I really hope you get some answers this time.

@Hopeandfaith1990 thank you.

An update from my side - I just had a call back from EPU and they’ve been speaking to the consultants who have said it’s too small to operate within their guidelines :( instead they offered medical management in the hospital which I refused as I think it would totally break me. With my first miscarriage I did expectant management (didn’t work), followed by medical management at home (painful and didn’t work), and then the MVA (so painful) and it dragged on with heavy bleeding on and off for months, so to go back to medical management when it didn’t work last time just sounds so grim. The nurse said they can’t make me consent to something I don’t want, so are going to email all the consultants again and see what they say.

I’m so worried it’s not going to be big enough for testing and I won’t get any answers. It just feels so unfair. It was bigger at my first scan with CRP and my first scan at EPU and all while they waited and followed protocols the sac is collapsing, they struggled to see the embryo today, and now I’m at risk of not getting tested and no answers to how I can move forward, or being forced into another option. Probably won’t hear back again until Monday now. :(

I just read about your experiences with EPU @MC8 and I’m so sorry, that’s just so awful, well done for raising it when you went back in. I have exactly the same fears as you about the wait, and thank you for the suggestion about progesterone. I did continue to take it last night and this morning in the hope that it would hold things off a little longer, it makes sense that it might. I agree on the genetic testing and I’m glad they offer this. It will help me understand whether it was immune related, I was being treated by CRP for borderline NK cells and Super ovulation for 6 months and then found out that I have pretty bad endometriosis because the letrozole really flared intense pain. I had a lap the month prior to this pregnancy, which was following 3 rounds of failed IVF and so now I don’t even know whether my issue is immunological or whether this one was genetic..hopefully all will become clear
I’ll be thinking of you xx

@Fletchasketch thank you, glad you're feeling better, and that they are normal symptoms of pred - I'll be thinking of you on Tuesday!

@Rainbowchaser87 thank you, I'm doing ok - just really want to speed up the process but it's all out of my control.

@Gems2811 I'm so, so sorry for what you're going through, and for your experience at EPU. It's such a horrible shock and the waiting makes it so much worse. Unfortunately I think a week's wait is normal - my SIL recently had a missed miscarriage and had a week's wait before surgery, I'm currently in a similar position. Just had a second NHS scan today to confirm another loss and they couldn't give me a date for surgery - said they'd call me back later today or by Monday... so it's looking like it will be at least a week, unless I get lucky with a last minute spot or cancellation. It's so frustrating and I'm also terrified something will happen beforehand as I really, really need genetic testing done. But as others have suggested seeing if you can get in somewhere else might be a good idea. My EPU suggested I could have an MVA sooner, but I am traumatised by the one I had on my first miscarriage and will not put myself through that again. Are you bleeding? I'm sure you already are but continue taking progesterone, hopefully that should hold things off.

Thanks everyone else for all your good wishes - I did raise my complaint about the Dr's comments with the nurse I spoke to in EPU today, she was very empathetic and said she would raise it internally, but I could also put a formal complaint into PALs. I'll see if I have the energy. Hope you're all ok xxx

@Jecca88 such great news you have a strong heartbeat and it's still growing, try and hold onto that, although I know it's hard. Really hoping it goes ok on Tuesday and things become smoother for you.

I'm self employed so am lucky in the respect that I have a lot of flexibility and there's no-one I need to tell - I can't imagine the extra stress it must cause trying to arrange and attend appointments around work. But I have been thinking about being more open about it for my own mental health as I feel I'm living a weird double life sometimes, all this stuff is going on and no one would have any idea.