Immune/NK cells - pred thread 29

[StillTrying10000]

Starting a new thread as the last was full.

@Sezmarelda1 don’t feel guilty. Having been through multiple losses myself, I’d rather take the drug and avoid the placebo, so I’ll be requesting a prescription.

When I had a late miscarriage in 2016 my bloods suggested there had been an infection. The placenta also showed signs of it. But the NHS put it down to an infection resulting from me carrying my son for two weeks after he died rather than an infection causing the miscarriage.

Two years later I had a hysteroscopy in Greece and they showed me a video of my womb and it was so badly inflamed. So I was given doxycycline there and then and told to take it on a positive pregnancy test.

My progesterone is fine but I’ve pushed for that among other treatment. Basically, anything that won’t do harm but that could help xx

Sorry you went through all that @MyEasterEggs

I've been reading a bit more about Doxycycline and it's sometimes used in the days leading up to an IVF transfer. It's not recommended once actually pregnant though so I guess they will have a different antibiotic in mind for you in that situation.

I think I've remembered what I was previously prescribed Doxy for and it would have been well before when we first started TTC, so it's probably unrelated to any of my pregnancy history, good or bad. I'm probably clutching at straws hoping it will work but I'm going to give it a try and hope for the best x

Looking back at my notes it seems I was prescribed azithromycin @Sezmarelda1. That was 2.5 years ago so I really need to go over everything again and refresh my memory. The idea of pregnancy hasn’t been on my mind while the focus has been on egg collection, but now we’re getting closer to potentially having a healthy embryo to put back, it’s time to pull my head out of the sand and firm up a plan xx

Hey everyone. I’m just catching up. Im a few pages back when posting this, but it’s just in regards to if it really works when everyone on here seems to be struggling…:

There’s a rule called 80:20 which suggests that 20% of people make 80% of the noise. I think in situations like this the worse the situation becomes for you the more likely you are to want to find people who are going through the same as you. In general the people posting in here are doing so because they’re struggling.

I know this treatment does work for lots of people. There have been people I’ve spoken to in the clinic who have positive success stories from being at the clinic. Equally there is a lot of dispute in the field because, simply, they do not do enough research into RMC.

I don’t know about you guys but I always find it so frustrating that all of the science seems to look at getting women pregnant (IVF) and not actually keeping them pregnant! It’s as if the assumption is “eventually it will stick”… which is so dismissive of how awful MC is…

Dr S is an NHS Dr though, and he signs up to “do no harm”, the treatment isn’t back up by tonnes of peer reviewed studies, but equally he’s been doing this for like 20 year so I feel like if it was causing patients more harm then good he’d have been forced to stop it by now.

Hello! How is everyone doing?

@MyEasterEggs - I’ve got all my fingers and toes crossed for you ❤️❤️ It only takes one

@Sezmarelda1 I can understand the way you feel. I’ve also been told I’m eligible for the trail and I think I’m going to take part simply because I’d like to think my experience can help others. That’s not to say either decision is the right one, it’s so personal. You shouldn’t feel selfish for doing what you think is right for you ❤️

@Conundrum12345 I’m sorry you find yourself here, where abouts are you in the world? Good luck for all the tests x

@VenusStarr how are you doing? X I really hope the operation goes well, I’ll be thinking of you.

@myrainbowjourney I really hope you enjoy your break.

I hope this isn’t speaking out of turn but I have really enjoyed mine. We’ve spent it doing loads of things together, redoing our garden, taking up running, going out for nice meals etc. it’s given me lots of time to reflect on the dreaded “if I’m one of the ones that just can’t”…. And I’m sure there will be many emotional turns along the way but I think I’m a lot more accepting now. Being childfree wouldn’t be the life I would choose but I equally can see that we also have so much more to live for (if that makes sense?).

I feel like on my TTC “journey” I began to feel like if none of the treatment worked that was the end of my world. I’ve realised it wouldn’t be the end, just the start of something new and that doesn’t necessarily have to be awful.

@89Hope I hope you’ve had a lovely weekend with your friends. I think you did the right thing to meet up with them, even though it must have been really hard. ❤️ How are you doing otherwise?

Thanks @SunDance21 I’m feeling pretty good this weekend so hopefully we get the news we need on Tuesday. Meanwhile, I’m enjoying Easter with family!

Trial participation is something I’ve considered in the past - back in 2018 when I had my first dealings with Tommy’s - but it no longer feels like an option for me at my age. It would also affect other aspects of pregnancy planning. If I wasn’t doing IVF and my history wasn’t so complex I might reconsider. But time just isn’t on my side and it would complicate things for me. Like you say, it’s such a personal choice xx

Was the Easter bunny good to you all?

I ended up eating copious amounts of chocolate and hot cross buns. Would love to carry on but my tummy isn’t thanking me for it! Good to take a break from the nutritional and supplement regime though.

Back on it today and beginning to plan for next steps as we’ve had some good news so far. Of the 9 eggs that fertilised, 4 were biopsied and frozen today, and it looks like another 2 if 3 could make it and be good enough to biopsy and freeze tomorrow. So it’s a great position to be in but we will lose embryos after PGT-A testing so still have a way to go.

Hi ladies. Hope you all had wonderful Easter weekends.

@Tgrf55 did AF arrive? How are you feeling?

@Sezmarelda1 what about you? Did your temp go back up, or did AF show her face?
The trial sounds interesting, but I understand not wanting to hold off for 3 months. Do you think you'll take the antibiotics anyway?

@SunDance21 thank you for your message. It's good to remember why we are doing this and putting our trust into Dr S.
you're right too - you just don't hear from the people who have quick successes. We will all get our time, it's just taking a little longer.

It's also great to hear you feel good for having taken a break. It sounds like you did so many lovely things and the change in mindset is amazing to read. We had this too a few weeks ago, and chatted about what we would do if it didn't work. We now feel like there is definitely life beyond having a baby, and we will be differently happy if it doesn't work for us. It was a real weight lifted once we had that conversation.

@MyEasterEggs that's such fab news! Why do you lose some through PGT-A? I really hope your good news streak continues. When will you be looking to transfer?

All ok here. I had my ovulation intralipids today - £380!!! I normally have them bundled in with super ov and meds so I don't think of the price of each. But bloody hell!!! It's the most expensive part! I nearly fell over in shock!
Back to POAS here trying to catch ovulation. It's quite refreshing to be back to basics. I really hope we have some luck soon

@VenusStarr how are you?

xxx

Hi @myrainbowjourney and everyone 👋
Glad you've had your intralipids 🤞 for taking a different approach this cycle. It's so expensive isn't it? 😔

Great news @MyEasterEggs I hope you get some good news soon, how long did they say for the results?

Sorry I've not caught up. I came on over the weekend and it's been pretty bad, really heavy and painful, which doesn't seem to fit with the scarring and poor lining issue. I've just emailed the clinic to ask for details as I'm supposed to be having the hysteroscopy next Friday but that's all I know.
I've been feeling really flat, it's probably my hormones but I feel really left behind. I've slipped back into unhelpful habits recently but finding it hard to work through. We had a nice couple of days together but it's always there isn't it?

I hope everyone is doing ok xx

@myrainbowjourney No AF!!! Day 37!! I can only assume the thyroid medication they gave me has messed up the cycle. It was barely raised and i'm questioning whether i truly need it as a few months ago my thyroid was fine. I'm waiting for them to call me back but how frustrating when i need it to arrive to start the programme. I think this will be at least a month delay now.
On your note about the intralipids i couldn't believe it when i saw the price either! If this wasn't involved it would make the monthly payments so much easier wouldn't it! Glad you are feeling positive atm xxx

@MyEasterEggs Good to hear you have some positive news! Keep us updated. xx

@VenusStarr I hope you are ok. It's totally understandable to be feeling that way. I have had 3 baby arrivals this weekend of women who were due similar time as me and each one is a painful reminder. I hope the procedure goes ok next week. My AF going missing is making me worry i also have scarring tbh. Sending you hugs. xx

Oh @VenusStarr sorry you're feeling flat, and that you're period is a bad one. It feels never ending sometimes doesn't it.

You're definitely not alone in feeling behind. People I spoke to when I had my first MC have all gone on to have successful pregnancies, some on their second. I'm having to really try to not compare myself because it makes me feel bloody awful. I'm having to try and really remember that this is my journey and it's not the same as anyone, otherwise I feel so resentful.

Please don't feel like you're falling behind. You also are on your journey, and one which will get you to where you need to be, hopefully really soon. What unhelpful habits? I think it's so easy. You become a bit unbothered by it all when you feel stuck, and there's just no motivation to do what you know you should. It's completely understandable. Don't be hard on yourself.

You're right though, it is always there. No matter how much fun you have away from it, it's lingering like a bad smell xxx

@Tgrf55 oh gosh that's so frustrating. Let us know what the clinic say. They were crazy busy there this morning, everything seemed to be running behind. Made me more annoyed paying all that money and it runs over time.

I wouldn't say feeling positive 😂, just embracing the break. Still trying to decide whether to book OH in for dna frag while we are off the meds, but I just can't decide. I'm just trying to not be deflated by it all, otherwise the expense and time taken by it becomes almost impossible to deal with. I was becoming so negative around it all, and that won't change the outcome, just makes the whole thing more miserable.
Also, having to trust our decision for using the clinic. If I don't think he will get us there we need to stop paying. There's no other option. So I'm putting my faith back in it for the last few months and hoping for the best 🤞🏼 xxx

@myrainbowjourney i did think they would be crazy busy today after Easter. I have emailed and called.....i know what you mean, when you pay £380 for intralipids you want an immediate response lol. I'm intrigued as to what they say....i have never missed a period before and just seems coincidental it happens when i take new medication. Unless the hyfosy also has delayed things?

You have just reminded me we are due the results of the DNA frag test for my Hubby too......i know what you mean it just feels like i am asking to hear more problems! Hopefully it's fine. Its a very expensive test but i guess at least if you book that in then you both know you have covered absolutely everything?

Will you head to IVF in a few months do you think? I am more and more tempted by IVF tbh.....i like the idea of them taking total control. I will see how the first super ov goes and how i feel about it, whether i agree with the timing of their trigger shot etc.

Enjoy the break.....as much as you can anyway :) I know what you mean, the whole thing is so deflating. I feel like that today. I just feel so far away from getting good news atm. Crossing everything for all of us. xxx

@myrainbowjourney just read that back and realised i said "i know what you mean" so many times lol! But.....i really do know what you mean!!!

@Tgrf55 yes I feel like we should have all the answers but if there's something wrong I'll then be annoyed we have done all this and it would never have worked, potentially. I know he will have to have tests if we go through IVF so do we wait for that or have it now? I think also, he has to abstain for a couple of days, and it might land right on our fertile week. So it's really tricky to know. He's just started a new job so timing is difficult for him to get there. So much to think about. He's already taking the supplement they advise if the results aren't normal.

Yes IVF will be the next step. I think we have 2 or 3 more super ov potentially and then it's IVF. Feels overwhelming to think about but like you, I'm becoming more open to it, and almost thinking it would be the best option. I just don't honestly know if we can afford it.

It's all so much mentally and physically, I just want someone to tell me what to do 😂 xxx

@Tgrf55 🤣🤣 it's comforting knowing others know, it makes it all less lonely. Although I wish you all didn't know what I mean. I wish none of us did

@myrainbowjourney I know IVF is expensive but think how much money you are spending at the clinic every month already....when you think of it that way it's not so bad and you are more likely to get the result you want to! I think it's a positive next step. Would you go to Kings as they recommend or a different clinic? I imagine Kings is more pricey if they recommend it?

Ah i see what you mean about the fertile week. Yes, he needs to "do it" (can't think of a better way to put it lol) 2-3 times the week before and then nothing a few days before. BTW they just chuck them in a disabled toilet to give their sample at the clinic lol! I was really giggling about, i thought they would at least get a nice room! I didn't feel too bad for him though as i had just had a painful hyfosy hehe.

I see the issue with his new job too. I am lucky my job is pretty flexible as we live an hour away from the clinic. It would be tricky with a new job!

I really hope my Hubbys results are ok....i cant' handle even more of a delay! AF not arriving is bad enough. I'm like a mad woman every time i go to the toilet at the moment! xxx

That's really good news @MyEasterEggs, I have everything crossed for you that things continue to go well!

@myrainbowjourney thanks for asking, AF arrived on Sunday, and I managed to get the Doxycycline just in time to start it on day 1 of my cycle. I do feel bad about the trial still, but this is probably the last time TTC for us, if we have another MC we have said we will probably call it a day, so I just can't risk getting a placebo. A research nurse from my local hospital called me this morning asking if I was interested in the trial and I didn't really know what to say, caught me a bit off guard I guess...

@VenusStarr sorry you've been feeling rubbish, I definitely think hormones play a part (I also got AF this weekend and my anxiety has suddenly gotten so much worse) but equally you've been through a lot and it's entirely reasonable to find it tough to deal with sometimes. Sending lots of love - and remember to be kind to yourself too

The long cycle must be very frustrating @Tgrf55! I occasionally get a long cycle out of the blue and it's often been at times when I've been really stressed. Could that be a factor for you? Hopefully if it is the meds it's because they are regulating your hormones and will stabilise your cycle length with time, but it would be nice to know what's going on, the not knowing can be really hard to deal with.

I forgot to say...after my last MC my employer referred me to occupational health (with my agreement) just to see if there was anything they could put in place to support me better. My appointment is tomorrow and I'm now really dreading it and wishing I hadn't agreed to the referral. It's not that I think anything bad will come of it per se, my employer has been really supportive, I just can't see there being anything else they can do to help and it means having to explain it all again to someone new which I don't really want to do. Have any of you been referred to occupational health due to your MCs? It's too late for me to cancel really and work would ask why if I did, but it's really not helping my anxiety right now. Hopefully it will go better than I'm expecting!!

@Sezmarelda1 I totally understand this.....my boss suggested therapy to me via our private health insurance. I've been having it since November and i have to be honest it doesn't do much for me at all, i'm thinking about ending the sessions now. It's not ideal having to bring everything back up. If you feel that strongly about it then cancel it - or just go in with an open mind. At this point i think we all just need to do whatever protects our hearts the most.

The clinic havent got back to me today and i have left a vmail and also emailed.....tried calling again and no answer. I really wanted to speak to someone today, the not knowing what is going on with AF is driving me a little loopy. I was thinking that about stress but i have been stressed since November with MC 1 and always had periods....just seems odd it's been since they gave me thyroid meds. I havent taken them today, wondering whether thats a good idea or not....argh hopefully they call me back soon xxx

@Tgrf55 I agree with money, but I could have paid for nearly a round of ivf by now, and sadly we don't have a bottomless fund. Will just have to see.
The clinic haven't spoken to me about IVF yet but I've heard kings is the clinic they partner with. I'll see what they say but I'd like to choose a clinic I'm happy with rather than just go with who they work with. Not saying I won't be happy with kings, but I won't just go with them because the clinic suggest it.

That made me laugh about the disabled loo 😂. I think I'll see how this cycle falls and if I've ovulated he can do it but if not I'd rather have a chance to try.

The new job makes it tricky but again, life must go on. I always wonder what they think as I always go alone (an hour away for me too so I just nip there) but he just can't take time off.

@Sezmarelda1 don't feel bad about the trial. It's not for everyone and it has to fit in with your life and your circumstances. They can't expect people to put their plans on hold. Like you said you might not even get the meds and they can't put you in a position where you aren't getting the best treatment for what you need.

@SunDance21 @myrainbowjourney
Thanks for asking. It was nice to see family over the weekend and tried to keep my mind off everything but it's difficult when there are so many reminders that my babies should be growing up with their cousins and playing with my friends' children. One of my friends asked if I was feeling better now that I contacted them to meet.. The answer was an awkward no!!

@Tgrf55
Suggest you push them to get a scan to check what's going on. Have you ovulated this month?

@MyEasterEggs
Great news. Got fingers and toes crossed for you. Are you doing it through same clinic that crp partner with - Kings?

@VenusStarr
I know exactly how you feel, motivation really ebbs and flows. It's a very intense rollercoaster or hope and disappointment. All of the medications will also probably be having an impact on mental health so try to be kind to yourself.

@myrainbowjourney
Based on our experience I would recommend the DNA frag. My husband had an infection he didn't know about and his score was terrible (with no symptoms). We both had to take antibiotics and he improved diet/exercise and it improved dramatically. Worth the ~£500 for the testing when you are throwing so much money at everything else. They do a repeat test after 3 months included in the cost.

I finally got round to listening to the Fertility podcast feat Dr S on our drive at the weekend. Thanks to whoever recommended it!! There is also one on that page about sperm DNA frag and one on basic process for IVF which we listened to and found both helpful. The sperm dna one re-iterated that men should get tested for this if a couple has had repeat miscarriages.

We discussed our situation at the weekend and after I've had surgery for the cysts we are going to cut our losses on the super ov and go for IVF. Would be interested to know if anyone has any feedback on recommended clinic Kings?

Also, if we are thinking about a meet-up, I can set up a WhatsApp group to try arrange date if people want to DM me their numbers. Or can set up a fb group if preferred.

@myrainbowjourney i have heard they are totally open to whichever clinic you go with for IVF so no pressure from them on who to pick. Do you maybe have any recommendations from friends or friends of friends?

@89Hope I had a scan at my last appt 3 weeks ago and i hadn't ovulated yet but i had lots of follies....they said all looked fine. I then got a peak on clear blue just under a week later but my luteal phase has been to long now....so assuming i either didn't actually ovulate or the meds have stopped the cycle. Really weird. I wish the clinic had called me back!

@myrainbowjourney if you have any questions about the SpermComet let me know. Together with a urine culture, we found it useful in identifying and treating issues. And generally for peace of mind. I know it’s an expense but 50% of recurrent miscarriages apparently relate to the male partner especially if they’re recurrent early stage losses.

I’m having PGT-A because at my age and with previous sperm DNA issues it’s unlikely they’ll all be genetically normal. When you’re over 38 I think they say that 1 in 3 might be what’s called ‘euploid’ meaning they have no chromosomal abnormalities. I thought it was 1 in 2 so that brought me back to earth with a bump.

@VenusStarr I’m so sorry you’re experiencing such a heavy, painful period. Hopefully the hysteroscopy will reveal more. I have one lined up too and hoping to get some understanding of the health of my womb. I feel scared to do a transfer so trying to get as much info as possible. We get the embryo biopsy results in two weeks and then I’ll be onto the endometrio plus immune tests and possibly a TEG test but haven’t made up my mind about that. It’s to do with taking aspirin for clotting but I’ve read that it’s not recommended for a frozen transfer. Transfer is a few cycles off so time to figure it all out.

@Tgrf55 ahhh long cycles drive me mad. Mine varies but last month was longest in ages and I ended up being in London for 3.5 weeks instead of 2 weeks after a strange episode of spotting. Glad it eventually arrived and I was able to start treatment but I was so tired and sad with the wait.

I’m looking at your chat about intralipids and have to say Dr Shehata’s price list blew me away. You’ve reminded me that I need to post on here asking some questions about the tests because it’s so different to Chicago which I’ve had. I didn’t realise he did different tests until I heard him on a podcast. I thought it was just different treatment.

@Sezmarelda1 you’re doing the right thing for you and that’s what matters. I feel exactly the same about trials. And on the referral, maybe give tomorrow a chance, just see it as a time for you to share your current feelings rather than explain your situation in detail. Maybe then you’ll get more out of it. If not, you might just feel the release of getting stuff off your chest. I hope it helps in some small way.

I’m having a right wobbly day. Supposed go be working but can’t focus. It’s been such an up and down few weeks and I’m beginning to feel the tiredness kick in as well as the weight of a possible pregnancy after 2.5 years of not TTC xx

@89Hope I demolished those podcast episodes while I was away. It was so helpful (and reassuring too as two staff members from my clinic featured on it!) I’m with The Evewell and found those episodes useful for understanding the egg collection and embryo testing process. I also enjoyed listening to Dr S and he raised some valid points that I need to consider around treatment. I’m concerned about my clinic being happy for me to see him about immunes though xx