Immune/NK cells pred thread #31

[VenusStarr]

Hi all, we've fill up the last thread, so starting a new one. Will start tagging but feel free to add anyone I miss!

Thank you @VenusStarr, I am sorry things keep being so difficult and crappy for you, I really feel you ❤Haven't cried today -yet! But have been livid with rage at the sheer irony of it all. I just can't get my head around how pregnancy came easily unaided and now I'm put on something that should speed it up and I'm responding well to the drug, but I'm just not getting pregnant at all. It doesn't help I work in an office with a predominantly female workforce and I'm constantly surrounded by either someone who's pregnant or just returned from maternity leave, I could not concentrate at all at work today, all I wanted to do was going home and punching a pillow repeatedly, in fact I had an overwhelming desire to actually smash something up with my bare hands all day.
But yeah, I can see why you're feeling completely deflated and demotivated, yet as you say, for as long as you keep yourself going, the hope is there and may not be a bad thing as it may eventually take you there, it's just all very exhausting.

@Lily1990 you hit the nail on the head there, the BFN sure hurts even more when you're £350+ lighter each month from the meds, scan and trigger and yet all I would like is an explanation as to why. I get some people don't respond well to it in the first place, but I did, lining and ovulation, so why? Does it create an imbalance into some other hormones that are necessary for implantation etc...I have no idea, but I will be sure to ask Dr E at my next SO scan and then decide whether to do any more Letrozole or just full natural with the immune. Having said that it could be the immunes as well as the Letrozole, they just need to explain things if they don't make logical sense.

I think I'm trying one more SO + Hyfosy and if there's a good response again, but no pregnancy I may even ditch CRP altogether, I'm not convinced the intralipids make that much of a difference and given the cost, I may try with Pred and cyclogest alone plus the usual aspirin and cocktail of supplements.

@nottsgdns I had an ERA, but I echo @VenusStarr that evidence in support is debatable. I was in a similar place to you when I finally got to my embryo transfer, thinking I already tested everything and that 'as long as I could create at least one euploid embryo through IVF, implantation wasn't a concern' of my consultant because I got pregnant naturally so easily, I thought I'd already tested everything under the sun and then suddenly my consultant throws all these other tests at me, including ERA, which I ended up paying for in the end because 'what if I don't and it doesn't work and I only have one embryo I will always wonder' - well, it still didn't work so felt utterly stupid for having wasted more time and money on all that. I think the main reason why ERA is debated is that however accurate in the cycle you are tested, there is no certainty that your receptivity window wouldn't vary from cycle to cycle. I remember getting very angry when my consultant brought up these additional tests, that I did what I needed to do, spent a ton of money, was ready for the final step and then suddenly the responsibility is put on me again to make more decisions that could make or break the pregnancy. I feel for you and see you. x

Hi everyone, hope you're all okay. Its horrible to see how many of us are really struggling to pick ourselves up, I've caught up on all your messages and just wanted to send you all lots of love, i really do hope we get some good news soon ❤️

I wish I had some good news to share but I don't. We had our 6th month of SO scan this week, this time I was on 10mg for the final month, and as I thought I didn't respond well. I responded better on lower doses. I went in on day 7 of my cycle, and already had a dominant follicle at 23mm, lining was at 6.5mm and I was triggered at the clinic. I didn't have intralipids this time as i thought whats the point. I felt so defeated leaving the scan as dr edge went over next steps and going back to ivf (almost as if this 6th month is gonna be a bust)

Just seeing the meds list again made me feel nauseous and the thought of it after having 4 transfers and 2 egg retrievals already just makes me feel so shitty as if my body just isn't doing what its meant to. I literally cry almost every day why is this process so unfair?

I questioned whether my issue is these meds speeding up the growth of my follicles too quickly so that the egg inside is immature but i was told it shouldn't make a difference, however when i google (and i know i shouldn't google) they all say a short follicular phase isn't good as it doesn't give the follciles enough time to mature. I'm getting to a point now where I just don't want to be a guinea pig anymore if I was to go back to ivf, and the thought of it really triggers me as I've only just gotten over my ptsd from it.

@VenusStarr I totally relate to how you're feeling, I just don't understand how the universe can be so cruel to make us have to go through it all again. I'm debating whether to have a few months off or do I just have september off and start it in october..I still don't know how I feel about doing it with CRP as I kinda want to be in the comfort of my own home if i go through ivf again but i don't know which other clinics to approach in the west mids. Sending you a big hug, I know I don't always respond in this group but i'm always thinking of you all xx

Hello everyone, thank you for your supportive messages ❤️ unfortunately this is a chemical. My period hasn’t started yet but my test today (14DPO) was fainter than yesterday at 13DPO, which was already faint. And CRP told me to stop taking the meds and expect my period given the faintness of the tests. Obviously I’ve only had positive tests for a few days so it’s super early, but it’s been such a head f*ck and feels extremely frustrating to have had a loss on Dr S’s plan, which I had so much hope for.

I’m wondering if they will increase my pred dose to 25mg as only been on 15mg. And maybe we will consider IVF with genetic testing to have more control over all variables.

@star2022 sorry you are having such a rough time, that is really upsetting. This process can be brutal, I don’t know why the universe can be so cruel at times. I think having some time off is a great idea as it will really help your mental health.

@clhiuperhaps have a cycle off SO and see how you go? If you have conceived easily in the past without, it doesn’t make loads of sense to keep putting yourself through it and the extra expenses. I’m sure they are going to try and persuade me to do it because my ovulation is so late (CD25 last month) but I’m very resistant given lack of success in the past!

@VenusStarr hope you are doing well too, good luck for your test day xx

I’m gonna take some time away from mumsnet and fertility stuff as on holiday but I’m thinking of you all and sending a big hug! Xx

I have tried twice to message and both times I lost what I wrote 😫 so frustrating!

@clhiu how are you? I get that anger and frustration. I just don't get how some start treatment and all goes smoothly and I've been under the clinic 3 years, no natural pregnancies on immunes and 2 losses on the full complex plan with ivf. It feels very unfair and no one can explain it.
Are you going straight into another SO cycle?

@star2022 I didn't realised you're in the West Midlands, me too! I do find the trip to crp a trek sometimes. We've ruled out doing ivf with them because of that. Geri also told me they'd go max dose stims on me and I'm not sure how my body would respond to that. I've only done mild ivf before and first time we got 100% fertilised make it to day 5 and had 2 pregnancies. So it scares me.
I'm so sorry this cycle didn't go well but I'm still holding hope for you. Its so deflating to put all this effort in.
I only know of Create and Care locally and I think you were under a Create before? I'm almost fearful of doing ivf again and giving to go through it and looking for reasons to not do it.

@Lily1990 I'm so sorry ❤️ I hope you have a good break and get some rest.

I definitely think I ovulated. Its been such a weird cycle for me. Will be glad when it's over. Even if af is due on my birthday 😪

I hope everyone has something nice planned over the weekend ❤️

@Lily1990 I'm so sorry your cycle hasn't worked. It really is shitty. I hope you have a lovely holiday, taking time away from all this sounds like a great idea x

@VenusStarr Yes I'm in the west mids too so my ivf last year all took place at Create Birmingham (although that was a trek for me too as its pretty much an hour or so away from where I live). I also heard CRP do max dose of stims with both gonal-f and menopur and I think this wouldn't suit my body either as I tend to respond better with less drugs. I even tried telling them i don't think that would work for me, but they didn't offer any alternative protocol which makes me question whether its the right clinic.

However, after a really shitty few days I came across this guy who deals with infertility, trauma, ivf, stress etc based in Solihull he's been doing it for 30 years. I thought of you and whether you'd be open to seeing this guy if he can help with the trauma side of things? He's fully booked until end of november but I managed to randomly get a cancellation on thursday straight after i had a little cry, it felt like it was meant to be. Anyway we both went to see him, its a 45 min consultation and he literally said dh was fertile and i wasn't. My heart broke, but he then said he can 'fix' me. He told me there wasn't anything actually wrong with me, and that the drugs are actually making me worse. He diagnosed a few things which he apparently sorted, did some trauma healing, acupuncture and some other stuff which i'd never seen before, told me my body needs to have a break and that when i do, i will fall naturally and that i don't need any more sessions with him. It was SO strange, but he was 100% confident. He also has a crazy track record of amazing reviews and success stories. I don't know if something like this might help you before you embark on ivf, but i feel like a new person since seeing him, happier, lighter and just clearer head and less aches and pains as i have had a bad back for a while which he said was trapped trauma and sorted and its completely gone now. I've also decided to take a break like he suggested so lets see if he's right. I haven't even taken the steroids or meds this month and i ovulated yesterday. Happy to send you info if you need, i know holistic remedies aren't for everyone but I genuinely do feel heaps better.xx

That's really interesting @star2022 is he an acupuncturist? Or something else? How strange that he said you don't need to see him again? If you feel better then it's definitely worth it. Yes please do send the information and I'll take a look. Although I'm not sure dh would be up for seeing him, does he have to see you together? I definitely feel like I'm carrying trauma too. I'm intrigued

You're similar to me with the stims and protocol. I don't think max dose is for me. Taking a break will be good I think. Its relentless just keeping on going ❤️

@VenusStarr @star2022 I think I saw this guy two years ago too. Also West Midlands area. I did get pregnant a couple of months after seeing him for two sessions. It was a very strange experience to be honest. But I went on to have two more losses. So, I don't think he 'fixed' me. I do think he helped release some stored trauma and also fear which was holding me back from falling. So I'm tempted to see him again as think fear and trauma do strange things to me. Not related but West Midlands peeps, did you know you can get intralipids at a place called Cherish in Sutton Coldfield for £200? I've done this a few times when I'm having a low dose/trying naturally cycle not with CRP to keep the costs down!

I'm on a first cycle back trying after my laparoscopy and already finding the meds hard. Sorry to hear you are all finding it tough too. I'm not sure we have it in us to try ivf if SO doesn't work for us soon. Thinking we may try for a few more months and then have a break until the New Year.

I'm currently away camping trying to get away from it all but these meds do make me feel low!! Hope everyone else is managing to have a nice bank holiday weekend x

@VenusStarr Honestly all I can say is when I was there, I thought it was all a bit wacky (as I am of a medical profession so science and evidence is where my head is always at) but the only thing that made me want to go to him is because of how busy he is, how confident he was and how he doesn't even advertise himself as all his customers are through word of mouth recommendations. I also felt that if he was 'scammy' he would have told me to come back for more sessions, but the fact that he only told me to do the one with him is what made me left questioning myself and now all I can go by is how I feel (which is amazing). His name is Michael Gorman it'll come up if you google him based in solihill and he definitely does acupuncture so even alongside treatment from what I can see from reviews, but he also does some other things like EFT to release trauma, and honestly some other weird things too that I can't even begin to explain the logic behind. But there's obviously a reason why people go to him, and he's fully booked all the time. His website has a booking portal, i think the earliest it says is end of november but every day I have been checking his timetable and I managed to get a cancellation (it comes up on the calendar - as soon as you see one available, book it asap as they go SO quickly, I tried last week too and saw one, I clicked it and within seconds it went).

He does want to see you both for the consultation, after that i'm guessing he will tell you what he thinks- for me he just said I didn't need to come back and also gave me a timeframe for when i'll get pregnant so lets see. But it may be good for dh as he's been poorly hasn't he recently, so he might be able to help him (he doesn't just treat infertility - my dh has a bad back and he sorted him out) it costs £90 for the consultation and that's together so just one charge. He also told me what I was allergic to and that it affects my hormones so have been told to avoid eating certain things. All I can say is, I felt a huge weight lifted off my chest and felt like I could breathe again after seeing him. Let me know if you decide to see him, I just think at this point I'll try anything to heal! x

@HopefulH that's really interesting! was it the same guy as above that I mentioned? I do think trapped trauma does so much to us, I feel like this is my issue from falling too and whenever i've had treatments ivf/so i feel like i'm just making myself worse and the trauma just keeps piling on. I've had several people tell me that my issue is trapped trauma and energy.

Also that's amazing to know thank you for that. Although, Intralipids is something i still am weary about whether it actually works. I guess for me, having had 6 SO cycles now, I'm feeling very negative about the whole thing and that if it was as simple as reducing my nk activity then surely I should be pregnant by now?! i don't know, the whole thing baffles me which is why i just know having a break is the right thing for me to do. Sorry you're feeling low, the meds don't help at all do they? I hope camping takes your mind off it all, and I'm glad you have a plan in place x

I didn't realise you were near me too @HopefulH intersection you've both seen him. I think I've heard of him.
I'm sorry you're feeling low on the meds ❤️ dh went to Cherish for his sperm analysis. I liked them. Do you need a referral for intralipids there?

@star2022 I may have even spoke to him when my acupuncturist let me down just before my first FET and I booked acupuncture with someone who rented a room from him but cancelled it as I found someone a bit closer.
I do think I'm carrying a lot of trauma. I've heard of EFT too, were there specific pressure points for unblocking it? What else did he do with you?
I'll have a look. Xx

@VenusStarr To be honest the whole consultation felt like it went so quickly and I was speechless for most of it as i didn't quite know what was going on. So he does this thing with my arm for most of the session, and then he had some vials too which he brought out like loads of them to help diagnose things, he also did acupuncture on both me and dh, and also did the tapping thing on my chest to sort my back, he said my back hurts due to my heart (emotional blockage) and he sorted that out. He put a needle in dh foot and said his issue with his back is actually bladder related. He asked questions but then everything he told me was like matter of fact, he told me what gender i'd have, when it would happen, my cycle dates, told me i'd be super fertile after i've had my first, told me he's never been wrong and that i don't have to come back. I've seen from reviews some people have had to have a course of acupuncture with him, so i'm guessing each case is different. I have no idea if he's chatting waffle or is really that good but i guess i can only just see if everything he says is right as he told me a timeframe that isn't that long away 🤞

I wasn't expecting any treatment for this consultation as I thought it would just be a chat, but i just saw him the once and he did all the above in one session x

Wow @star2022 I hope he's right for you 🙏 do you think you'll still take immune meds to try? X

@star2022 Yes this is the guy. I think what he does works well often for uncomplicated cases. But he said I wouldn't have anymore losses and I've now had two. So of course my faith in him dropped. It was such a strange experience seeing him to be honest but I know people personally who he has helped get pregnant after 'struggling'. I would say they were more impatient to fall with their seconds rather than properly struggling and I think a lot of it comes down to stress and his confidence makes people relax it will happen. I don't know. I also saw one of his acupuncturists for a good while afterwards and whilst pregnant so I really feel like I tried!! I went back to see him after my second loss and felt a little like what he was saying this time was different. All that being said. Now I've had my lap, and I'm throwing everything at it the next 6 months, I might book in to see him again. I think I do hold trauma etc. and my back is so painful. So it might help in some way, but I no longer think he's a miracle worker.

@VenusStarr you just book in for the intralipids easy as that. And they're great. The follicle and lining scan they do is also very thorough. So I've done a cycle this time just with Cherish. Now in the TWW. X

@HopefulH oh yes i agree that he can help uncomplicated cases and i also found the trauma side of it and helping you destress is good. Did he tell you to continue with the meds or were you not on treatment at the time you saw him? He has also gotten rid of his acupuncturists and staff and he does it on his own now as he said they didn't do it properly and he wasn't happy with them so i wonder if you had one of those.

I also think to take what he says with a pinch of salt and know that our individual circumstances change as months go on so it could affect the things he is telling us.

Another thing that baffles me off topic, is when i saw dr edge and was questioning SO, she was saying sometimes your dominant follicle that grows isn't the strongest that's meant to be the one to grow as its being artificially stimulated to grow and I wonder if this is why i've been unlucky with it as i've probably had immature eggs that won't fertilise. My body has never really done what it's meant to with meds. If I knew about Cherish, i definitely would have gone there for my scans and intralipids! I can't believe I've had to trek it so far!! Good to know though, do they also offer you a trigger shot?

@VenusStarr I won't be taking anything, not even steroids. When I saw Dr edge she said to give my body a break before ivf anyway so as it stands, I am only taking my vitamins and feel 100x better already. I'm in my 6th SO cycle currently in my 2ww but haven't taken anything not even progesterone. I think if i had more than 1 follicle, i would have been inclined to continue with the meds but i'd rather have these 2 weeks to heal. My follicle was 23mm by day 7, how is that even possible? Everything i read about a short follicular phase is telling me it prevents you conceiving, and on letrozole every SO cycle for me has been like this. Normally, people develop a mature follicle 5/6 days after stopping letrozole, mine is only after 1 day which tells me maybe it's not for me. I think i'm a poor responder to these stimulant meds.

I am also doing weekly acupuncture with a lady that specialises in fertility, and my plan with her is to just do loads of self care now for the next month or two, get into a good place physically and mentally and if i still don't get pregnant then I've always got the option of ivf and at least by then, my body will be in a much better place to handle ivf again rather than rushing to do it now while i feel half broken lol xx

@star2022 oh wow, it sure sounds like you were given a lot of positivity and made to feel better about things, which can only be a great thing and help destress plus all other things that are good for fertility.

@VenusStarr and @Lily1990 I’m trying a third SO + hyfosy. If this still fails, regardless of response, I’m going to ditch SO as having read what @star2022 is saying, I wonder if the lead follicles being triggered manually don’t contain properly mature eggs hence the issue. I’m also going to try and have the scan on day 10-11, given on day 12 both times I had one follicle that was already too large (although I also had others more in the correct size). If follicle sizes and numbers look unsatisfactory this time, I will ask to forego the trigger and intralipids as it seems a waste of money.

For those of you who had the hyfosy done there, were you ok to take yourself home afterwards ? Any discharge, pain or discomfort with intercourse in the days to follow?

That sounds like a really good plan @star2022 I think rest is so important but taking breaks feels like we're wasting time. I do miss acupuncture but it is really expensive. If we go back to ivf I'll definitely do it again.

I looked on his website and the first appointment was 8 December. It's likely we wouldn't doing ivf until at least then anyway. Think I'll see what happens at my ivf consultation on Tuesday. I am definitely a complex case 😪

That's useful about Cherish @HopefulH I'll keep them in mind, they're fairly local to me.
You definitely tried, please don't feel like you didn't do enough ❤️ I just think we have been incredibly unlucky and its really cruel and unfair to try what we have and it still not work.

I'm 4 days late now. Tested with a cheapie yesterday and nothing. Cd28 today which is not normal for me. According to my bbt chart, I am 9dpo. My resting heartrate is back up. Jumped 3 from yesterday. There's a part of me that is thinking 'maybe' 🤔 but then I remind myself that I've never been the exception 🙃

Posted at the same time @clhiu yes, fine to drive after the hyfosy. I went for some food just to give myself time. The actual procedure isn't too bad. I had a hsg in the past and I couldn't cope with the pain. There's a couple of points where it was very uncomfortable but Dr E and Geri were lovely and helped me breathe through it. I would've liked someone to hold my hand but it's not too long a procedure.
Hope you're doing ok x

@clhiu I think him just telling me to stop meds was music to my ears haha! And I think if he said this when I was 2 months into SO, I probably wouldn't have done what he says but its only because i'm at the end of the 6 months now it kinda just makes sense for me to try at least give myself a break as I was deciding whether to go straight into ivf or have a break, and he kinda made that decision for me.

Also please don't be put off SO because of my case, everyone responds differently to meds and there are plenty of success stories with SO, but for me personally I just know that i'm a poor responder as my follicles are growing way too quickly, and the same thing happened when I had IVF last year too.

@VenusStarr I know what you mean and honestly, I was ready and raring to go with ivf just a few days ago as I didn't want to waste any time too (well not ready but you know what i mean) I'd even told CRP to book me a consultation with Mr jan to get the ball rolling, but I don't know after seeing this guy, I just feel like this is the right path for me now, and i feel okay with this decision for some reason. All i've ever done is do cycle after cycle and haven't really had a break from meds or treatments but after a lot of reflection, realising that, my sleep is always messed up on these meds, i look so aged, my body aches all the time, i cry almost every day, and trying what the docs have said and for it to still not work, I think my body is crying out for a break even though the thought of waiting around kills me lol. But i'm trying to see it as a positive that if i did need ivf, i'll only be in a better place for it anyway so really i'm not wasting time.

Also 4 days late? have you ever been this late? Your chart looked good the other day too, i'm keeping my fingers crossed for you ❤️

I think you feeling a sense of peace with your decision is great. Its almost like a confidence in your own gut. I've found over the years of all this I don't know what my gut is thinking so I'm constantly second guessing myself which is exhausting. So embrace this feeling 💓

Yes. 4 days. I've only ever been late when I'm pregnant but I do think it's more likely because of later ovulation. We did have sex when I had more ewcm, so we're definitely in with a microscopic chance! I think I'll get a boots early response to do on Tuesday.

Did you hear about frer? Apparently there's an ongoing court case with them so they're banned for sale. I don't trust clearblue though. I have had so many evaps on them.

@star2022 forgot to tag you!

Morning all. Hope everyone is doing ok. We had our ivf consultation this morning. I really like our new consultant, she was matter of fact but with compassion. We've got some tests to do and dh needs a repeat sperm analysis and dna frag. I've got to put on my big girl pants and redo my amh which I've been in denial about but she did say they don't have a lower cut off (it's Create, so they specialise in it). She did suggest pgta testing which I'm still on the fence about but we've got time to think about everything.

Af is definitely on her way but I feel okabout it, just hope it doesn't ruin my birthday.

Lots of love to all ❤️

@VenusStarr glad you had a positive experience with Create as I’m keen to hear about them and PGTA testing which I’ve never done but think I should have.

I have been following this thread still but completely quiet as was holding my breath for my fourth ivf round which sadly ended in miscarriage last week at 10.5 weeks. Feeling very defeated at the moment, 4 IVF attempts, including 3 losses in the last 18 months. This latest round I had intralipids and prednisolone and heparin which was all meant to help with the Nk cells issue. The embryo was a 5AA so great quality. It was my last one and the only frozen one I ever had. I’ve now been referred to the recurrent miscarriage clinic which should happen in October. My AMH was 1.8 2 years ago so I am not sure what it will be now which terrifies me.

it’s so hard wanting something so badly but also feeling like I’m sacrificing my physical and mental health in the process. Can’t even bare the thought of more treatment at the moment but know my resilience is at an all time low. Need to get my body back to feeling good (and my mind). Looking forward to being able to exercise and sweat and enjoy a glass of wine in the bath!

sending everyone lots of well wishes. You are all warriors! X

Oh @Ems123456789 I am so sorry to hear this ❤️ sending you lots of love. I totally get the fear around starting again after loss. One thing that atuck with me after today's consultation was that it seems there a multiple factors that are contributing to our losses. She feels we've exhausted tests with me but feels there's more to dh and the overall picture which could be a factor in our losses. But that for some reason there is a combination of something coming together and causes the loss. That was reassuring in a way.

Have you been offered to have this baby tested? I'm so sorry that you're going through this again. It's truly heartbreaking.

Take some time to look after yourself ❤️ xxx

Thank you @VenusStarr i really appreciate your kind words.
It is interesting what you say re multiple factors I agree. I don’t really now buy in to just the immune stuff because I’ve had immune treatment on 2 rounds and it’s still not worked.
I can’t get this baby genetically tested no because one of my losses (my first one) was ectopic and so it’s only if they are 3 direct miscarriages they will test the tissue. I did ask the nurses at the hospital but they said the central system doesn’t budge on that rule. Ectopics actually don’t count for recurrent miscarriage either so I wasn’t confident I’d get into that clinic but I think they felt sorry for us and so luckily we got referred. I had a wonderful sonographer at the lister who delivered my bad news at the scan last week and she did encourage me to look at chromosome issues because I’m 35 and so she said to me I’m still relatively young so perhaps there is a problem occurring in the chromosomes either for me or my husband or when we come together in an embryo because the last two pregnancies have started fine but they die off.

Sadly my Gran also died 4 weeks ago so it’s been a rough old time. I’m annoyed because the day she died I didn’t go and see her at rest because I had to go to London for treatment and I knew she would have wanted me to go but I also found it hard for my own closure to not have seen her. Anyway that’s a different story!

luckily we have a trip booked to the Lake District in 3 weeks and I think a good active trip is just what we need.

But I’m very interested to hear how you get on with create @VenusStarr because I’m starting to wonder whether the ivf is bringing poor eggs to the surface for me whereas I know that the quality can be better with natural modified ivf in places like create.

Sending you love @Ems123456789. @VenusStarr glad you had a more positive IVF consultation and good they are checking everything out. It's hard having to repeat the test and hear the answers but totally best to be fully informed.

I'm going in for my first intralipid tomorow. Does anyone have any advice on how long it takes etc? Thank you