Immune/NK Issues - aka Pred Thread no 25!

[Eeviee]

An introduction to this thread. It has been running for many years and has proved a saviour for so many of us who have suffered recurrent miscarriages as we go through this incredibly tough journey.

Discussions cover immune issues, NK (natural killer) cells, thyroid issues, PGS and many many more.

Welcome to the group no-one wants to be in 

Tagging people from the previous thread but please tag anyone else I've missed.

@KittyKatSmile @FrannyAnny82 @HoldingOn2Hope @Crystal2020 @Countrygirl220 @HarrietM87 @williteverhappen @Wishing5tar @hrtbrk2 @KtAgs @Gooe @peperethecat @zoe16 @williteverhappen @mezgaski @VenusStarr
@Ultra26 @ceebee21*@Luckyducky2 @weddinghelp1* @Hippo20

@Eeviee poor you that sounds horrible. I’ve had to MVAs (manual vacuum aspiration) - they basically suck the remains out under local anaesthetic. I was worried I might have ashermans/damaged my lining after I had a very light period cycle 2 on SO and then a thin lining on cycle 3, so I did lots of googling, and basically found that it’s only once you hit 3 ERPCs that there can be problems with lining and that ashermans is really rare these days.

My first 3 mcs I had a normal period the cycle after, but the 4th one (which was no different from the others - all lost at same gestation) it took 9 weeks for it to come back and it was really painful. So it could also be just that your body/hormones aren’t quite ready yet?

In your position though I’d definitely ask for a scan, either at NHS or Mr S would do it for sure. Hope you get some answers soon.

@Eeviee sorry you going through that, sounds awful. I've had 2 erpc procedures and didn't have any issues after although I was worried about Ashermans syndrome so has a scan a few weeks after to check all was okay. I would get your gp or consultant to refer you for a follow up scan.

I've been for a walk earlier today nothing strenuous just a normal walk for about 20- 25 mins and started getting some groin pain. I've just noticed some pink discharge 🙈 only when I wiped but it has stressed me out! I woke up today thinking should I test again, am I even pregnant? Is the progesterone just keeping the bleed away? And then was telling myself it's all ok and I'm just being silly and now that cm has made me think it's all over! 😭

@Hazlet2 hello :) I'm so sorry you've been through heartache, I had 3 losses before I decided I need to see a recurrent miscarraige consultant.
I made appts with both Dr S - most of us on here are under his care and also made an appt with prof Quenby too. I waited 4-5 months for the Prof Q appt so hence why I went ahead with Dr S. I did see Prof Q and she was absolutely amazing. Kind, caring and very helpful and genuinely wants to help women have babies without paying extortionate private fees. However she is nhs and has a wait list. Also she is running a trial and wants everyone to join her trial, which was great but I felt I didn't have time in my side - I was 37 when I saw her and 38 now. She also does Nk cells testing however by womb biopsy and not blood test as Dr S does. She doesn't prescribe steroids but antibiotics instead. She doesn't agree with any of what Dr S does so bear that in mind if you end up seeing both it will just confuse you as it did me. I went with Dr S simply because there was no wait list and I read and researched his success stories. Prof Q did say she would still be happy to support me throughout my pregnancy as an obs/gynea . One of my good friends who is mid 40's has had 2 babies in 2,5 years under Prof Q and says she wouldn't have got there without her, she didn't ask her to join the trial because of age. I'm pretty sure you can call her secretary and get yourself on the wait list. The womb biopsy is charged and she does it twice over 4 months. I think it's about £450-500.

Xx

The sore boobs seemed to have disappeared too
:( it's usually when I get into bed and lie down I can feel how sore they are, nothing today. More pink cm too. 😭

@HoldingOn2Hope Sending you positive vibes & keeping my fingers crossed that it’s just baby nestling in 🤞🏽 They say spotting can be totally normal but I understand how worrying/disheartening it can be 😭 Can you get a blood draw so you can check that your HCG is doubling every 48/72 hours? This could give you peace of mind that everything is okay. When is your scan? Xx

@Wishing5tar Morning, I really hope it is just that. My gp has never offered a hcg blood test before so I doubt she will. It's always been go to Epu which gives me nightmares - I really don't like that place so won't be going.
I'm about 5 + 3 so I know it's still very early and I know spotting can be common from week 5. It's just scary as I won't know until my scan. Scan is next Thursday at 7 weeks but I may ring clinic today to ask if they can fit me in end of the week instead. No pink cm this morning but I have had the cyclogest in. I have read that cyclogest can cause cervix irritation and cause spotting too? I know I shouldn't be googling.

@HoldingOn2Hope are you still on the aspirin? I have no blood issues and in both pregnancies have had spotting/bleeding and the clinic told me to stop taking the aspirin. With my first pregnancy I had spotting from 4-5 weeks that started brown and then turned red. In this one I had no spotting early on and was breathing a sigh of relief when I had a massive bleed at 10 weeks. They didn’t find a clear cause for either - possibly a small haematoma this time, but could also have been irritated cervix. It’s really common.

FWIW I didn’t have any spotting in any of my 4mcs - it was either full on flooding and obvious mc or nothing whatsoever and ended up mmc.

The only thing that will reassure you is a scan so I agree - try to get in at the clinic unless you can bear going to the EPU.

@HoldingOn2Hope I’m pleased you’ve not had any more this morning 🤞🏽 I agree with what @HarrietM87 has said. When I had spotting, the nurses at Dr S clinic advised me to stop the aspirin and double the Cyclogest. You could also maybe try using the ‘back door’ 🙈 for the pessaries if you don’t already, as then you’ll know it won’t be causing cervical irritation.

I personally would try bringing your scan forward if you don’t want to visit the EPU as it’s the only way you’ll get some reassurance 💜 Have you done a clear blue weeks indicator? Not ideal but I’m a POAS addict and that was how I knew things weren’t progressing as they should be as the weeks went back down to 1-2 instead of up 3+.

It honestly sucks that pregnancy after loss can be so hard - sending love xx

@HoldingOn2Hope I'm so sorry to hear about the spotting it is the worst feeling ever, constant knicker watch and anxiety. I'm always a little bit wary of doing a clear blue weeks indicator because if it doesn't progress that causes huge amounts of anxiety and sometimes they just aren't accurate in progression, I've seen that a lot on various forums. I'd try and pull your scan forward like you say. Everything crossed for you lovely. If you double your cyclogest take one in the morning and one in the evening at the same time (so 7am/7pm for example) that can't do any harm.

@eeviee I'm so sorry to hear your concerns about your periods - that's not something I've come across before but I must admit I've had the worst pain ever in my last couple of periods and they are definitely lighter - as I passed my last Mc naturally I never had a follow up scan so I've always wondered if something has been left untoward in there. I would definitely get booked in for a scan somewhere - even if you book privately at a local fertility clinic they should do you one?

How's everyone else doing? I'm testing again on Wednesday but as of yesterday my boobs are no longer sensitive and I've had some mild tummy cramping so experience says this month is another bust! I find it quite disconcerting that I'm only day 8 post ovulation and can already tell - it's like my body just gives up too early. Looks like on to SO it is!! X

@HarrietM87 @Wishing5tar @hrtbrk2 thank you for your replies :)
I stopped the aspirin when I had the spotting a couple of weeks ago as advised by nurse at the clinic and also double confirmed to stop aspirin when I went for intralipds. I've already doubled up on cyclogest too so 1 in morning and 1 at night. I think it's just the anxiety when you see blood or spotting.
My first mc I had some spotting at 7 weeks but nothing more and didn't think anything of it until my 12 weeks scan showed no hb :(
2nd loss - spotting started at 6 weeks and continued for a week. No reason for bleed other than a small hemotoma and hb was detected. 3rd loss no bleed/spotting but no fetalpole/hb so I agree very pregnancy is different and I feel like I've been through all the variations so don't know what to expect. It's so frustrating.
Dr S has said I have a small cervix polyp which was nothing to worry about so I guess this can be a number of things. It's never straight forward for us who have been through loss(es)
I've emailed the clinic so will see what they say. I know I can't go into epu unless it was a absolute emergency. It sends my anxiety levels from 0-10. I spent so much time there I remember all the nurses names. One of the nurses is my gp's sister and she had tried to get me seen in maternity instead but they wouldn't have any of it.

As for clearblue the how many week detection I stay away from them as with the last loss I'd used them weekly and seen the progress however at the 6 week scan there was no fetal pole just sac. I almost took a test today but didn't.

@HarrietM87 I think if it was brown spotting I may feel better as it's kind of old blood coming away? But it's pink with blood streaks.
I hope the clinic can get me in by the end of the week 🤞🏽
I've told myself today that I can't change the outcome of a pregnancy and just need accept what will be will be. Xx

Thanks ladies, they always tell me my first period after a miscarriage may be heavier but I think that's the way it should be. I haven't had any bleed at all, not even after the surgical management which is odd. It just doesn't feel right, ironically I've never felt so desperate for my period. I spoke to my GP this morning and she's referring me for an emergency US so that should hopefully shed some light.

@HoldingOn2Hope I'm sorry to hear you've had spotting, have you called the nurses at the clinic to ask their advice? Have you doubled up the cyclogest as I know they've told others to do that if spotting? Sending positive vibes to you x

@hrtbrk2 sorry to hear that you think you're out this month, are you all set up to start the SO?

@Eeviee I'm glad you've got an emergency scan booked in. Are you having that done today?
When I had my 1st mc I opted for the medical management. The bleeding was quite heavy and nurses checked and said i'd definitely passed the pregnancy. Continued to bleed for another few days but didn't feel right - we know our bodies don't we? So a couple of weeks passed and I really wanted a few days away somewhere but asked my gp to refer me for a scan to ensure all was ok. It turned out the mc hadn't even started, fetus, sac everything was still in tact. Ended up having a erpc. Sometimes medical staff go by text book and it's not always right. I know with surgical management that's very unlikely however I've always asked for a follow up after that blip.

Yes I've doubled up cyclogest. Just have to sit right and wait I guess. This is my 4th pregnancy and I just hope it sticks, not sure I can keep going through all this.

Geri from the clinic has called to say she will try and get me in sooner, she said there's no point this week as need to be at least 6 weeks which is Friday. She's going to call and let me know.

Hi everyone,

I’ve been on a digital detox for a few days so just catching up on how you all are.

@HoldingOn2Hope my heart goes out to you having to go through this and I hope you manage to get seen by Dr S on Friday. I totally understand you not wanting to go to the epu...even driving past it gives me the willies.

@Eeviee that sounds horrendous and I’m pleased you’re getting an emergency ultrasound. I’ve always felt desperate for my period to reappear after my MCs because I’ve felt like of clogged up and like my body needed a release if that makes sense. Really hope you get some answers soon.

@Wishing5tar really pleased to hear you had such a positive 1st scan! Nice to get going on SO with some positive vibes. Fingers crossed for you.

Period arrived for me unfortunately and been licking my wounds since but need to dust myself off now and try to get my head in the game for this cycle. I wish I had just waited before sharing the test with my husband as he was so happy and it was so short lived. But I guess we can’t be expected to carry all of this on our own all of the time either.

Sending love to you all. Welcome to @Hazlet2. I’m sorry to hear your story but this group is super helpful and hopefully it will help you like it’s helped the rest of us xx

@HoldingOn2Hope with my son I had brown spotting starting at 4 weeks that got progressively redder and at one point had fresh red blood when I wiped. I had my scan with mr S booked for 6 weeks so ended up going to EPU at 5+4 and saw the heartbeat (so it is possible to see something pre 6 weeks). But obviously you’re worried and the worst thing would be to go too early and for it to be inconclusive. Hope Geri can get you in on Friday.

@Crystal2020 I’m so sorry to hear this - was it a chemical this cycle do you think?

I assumed it was a chemical @HarrietM87 but having read one of your posts I’m wondering if maybe I ovulated slightly later than I thought and the HCG was still in my system. Guess I’ll never know! Like I said before I’ve never ever tested early before starting all this in Feb so no idea if I’ve ever had a chemical before (if it even was a chemical). Would definitely rather be blissfully ignorant! X

Oh that’s good @Crystal2020. Definitely worth discussing with the clinic I think anyway - they’ll probs be able to either confirm it was trigger based on timing, or if not they might want to tweak your plan. My friend (who I met on an earlier pred thread!) had something similar the cycle before she conceived - she was convinced it was a chemical but Mr S said it was definitely just the trigger which really reassured her.

@Crystal2020 Awww I'm so sorry AF arrived :( this whole testing early really does play mind games. Were you taking pred and cyclogest too?
I've had days where I've woken up thinking am I even pregnant? Shall I test again?

@HarrietM87 I only had a tiny amount earlier today but nothing since. I do feel my cervix is a bit irritated when I put the pessary in so maybe need to try 'back door' tomorrow which just doesn't seem right to do 😬

I've managed to get an appt with Dr S on Friday, he said he'd rather scan me himself. My best friend came for a picnic in the garden today, we social distanced of course. I just felt I needed some normality today. I haven't told her yet. But she kept looking at my bloated tummy 🙈

@Eeviee when is your ultrasound? I hope you get some answers 🤞🏽 Thinking of you!

@Crystal2020 sorry to hear that AF arrived 😢 testing early definitely sucks! Fingers crossed it was just the trigger shot & not a chemical. 💜

@HoldingOn2Hope I’ve got everything crossed for Friday! I’m pleased you had some normality spending time with your best friend, I’m so thankful that the nice weather has meant we can spend time outside 😍

@peperethecat 🤞🏽for your test results today! Let us know how you get on 🧡

I got a call from the clinic yesterday to say that me and DH tested negative for the Covid antibodies so still need to be super careful, especially since I’m back on the Pred now after a two month break. I also decided to test out my trigger and the comparison between 1 day post trigger and today 4 days post trigger is crazy - it’s faded so much. I’m hoping that by the time I test again on Friday (7dpt) that I’ll get a negative and than any new second lines would be a pregnancy 🤞🏽 I’m trying to stay optimistic about this cycle but the nurses did say they see the most success with SO between cycles 4-6 so not to be discouraged if it doesn’t work. As a distraction we’re just throwing ourselves into DIY instead 🙈
We’ve almost finished renovating the living room, the kitchen extension should be finished by the end of the month & our bedroom shortly after - yayy!

Happy Tuesday everyone xx

@Crystal2020 oh I'm sorry to hear this, as everyone else said hopefully it was the trigger, I didn't even know that was a thing? I definitely think you did the right thing sharing with your hubby, I couldn't even imagine going through all the metaling all on your own, it's enough to drive anyone completely insane. Fingers crossed for next time round🤞🏽

@Eeviee I'm glad you've managed to get a scan, hopefully it's soon and it gives you a bit of reassurance. Ironically, when my period was a bit late the second month after a MC I had the scan booked in, and would you believe it turned up the morning of the scan.

@HoldingOn2Hope glad that you've managed to get a scan on Friday, will be keeping everything crossed. I've had a few spotting incidents and it's just pure torture, but it sounds encouraging that it has stopped now. And I definitely think (however horrid it is to think about) the back door is a better option, it's much less messy, particularly as you're having to take them twice per day. And you'll get used to it pretty quickly.

@Wishing5tar fingers crossed for your upcoming test! I have also found DIY a useful distraction, the more practical things I think are a better and it's harder to be tempted by Google.

Hope everyone else is safe and well x

Thanks @HoldingOn2Hope - I was on pred, Cyclogest & Hydroxy this time so a triple whammy! I’ll just be on the hydroxy and Cyclogest this time. I’m not surprised you’ve been feeling like that but you should definitely hold off on testing now or you’ll drive yourself potty. Really pleased to hear you’re seeing Dr S on Friday. And I would def recommend the back door route to rule out any irritation. I hated it initially but you get really used to it. Hope you’re ok today.

Thanks @Wishing5tar @Countrygirl220, it would honestly not have crossed my mind about the trigger shot if I hadn’t read @HarrietM87’s post. Just one more reason this group is so useful! Will def mention to the clinic like you say @HarrietM87

@Wishing5tar I’m keeping my fingers crossed for your test. That’s so interesting the nurse said they see most success between cycles 4 and 6. My husband is already a bit over it because we haven’t had success after 2 goes so I need to tell him this info!

Hope you are doing ok @Eeviee xx

@Countrygirl220 @Crystal2020 Defo will try back for this eve! Painful boobs are on and off and I'm feeling extremely hot! Is that even a symptom? I know it's warm out there but I'm super hot and I've always been a cold person, never can get warm enough! My DH just said it's not as hot as I'm saying I'm feeling!
I'm so scared for Friday but not going to think about it until I'm on my drive to Epsom!

They’ve always said the same to me re SO success. They think there’s some cumulative effect of the letrozole plus some dosage calibration usually. have faith!

I mean success most likely cycles 4-6!