Immune/NK cells pred thread #31

@Ems123456789 I'm so sorry to hear this. It's so heartbreaking and I also agree it's awful the NHS don't have a standardised protocol when it comes to testing. I was told I could have our third loss tested but unfortunately it came back as inconclusive. We had karotyping tests done via Tommys recurrent miscarriage clinic which came back all clear. I've recently been diagnosed with endometriosis, and had a lap to excise. Have you had endo investigated? One of my close friends recently got diagnosed with stage 4 endo after 4 unsuccessful rounds of IVF and an immune protocol. She was told with the endo removed her chances are better now. I'm also so sorry about you Gran... I hope you can dive into doing lots of good things to help you recover mentally and physically xx

@VenusStarr Sounds very positive that you liked your IVF consultant. What was her name if you don't mind me asking? I've been looking at Create too as my AMH is very very low. It's been a year now since I was last pregnant which is scaring me. Worried my days of naturally falling pregnant are behind me, especially with being on the CRP protocol. I'm going to do three SO cycles and if I am still not pregnant I might try a few months on no meds at all!

Sending love to everyone x

@Ems123456789 I am so sorry you're going through this and agree it's an absolutely terrible approach from the NHS, especially in relation to your ectopic. I also think it can vary depending on constituency, I heard of some having the first loss tested without quesion, more pit luck like we need any more!
DH and I only had kyrotyping specific to the two issues found in the two babies we lost and tested. If abnormalities are found in the tissues, the NHS will take your bloods and have them tested for that same specific issue, in our case triploidy and a trisomy 15, we are not carriers of either so they happened by accident. On account that they were two different abnormalities and the 5 embryos we PGT-A tested all had different abnormalities too, I would say it's unlikely our issue if of a genetic nature and that one of us may carry a specific translocation so haven't considered paying for additional genetic testing on ourselves. We have no such issues in the family as well so assuming that's unlikely to be the cause, but for some genetic tests may be very valuable.

AF is here so I booked my next and last SO scan, intralipids and also hyfosy. @VenusStarr any concerns with intercourse immediately after the procedure? I'm assuming it should be fine given it can be done in the same cycle, but wanted to be sure based on firsthand experience. They advised about possible discomfort and light bleeding afterwards, assuming that would be from the cervix being disturbed and nothing else?

Thank you @KtAgs appreciate your message.

Thank you @clhiu and I’m so sorry to hear re your losses.
I agree it is barbaric. I did try to research private testing but I couldn’t find any concrete information and by this point I was ready to get everything sorted as the waiting to get it resolved is just the worst bit sometimes.

What makes me laugh is they say that they don’t test ectopic pregnancies because they know what causes them but no doctor has ever been able to tell me why my first one was ectopic other than probably just bad luck. 🤦🏽‍♀️

Did you have any genetic testing on yourself or your husband for any issues? I’m also considering that.

@Ems123456789 I am so sorry about your outcome, it must be devastating. How terrible the NHS won't test unless it's at least 3 losses and ectopics don't count, that is such a barbaric rule, to expect people to put themselves through this 3 times before offering any concrete help, it's really frustrating isn't it? Did you consider private testing? My third loss was tested, but for the 4th one I had to insist, they tried to brush it off by saying they already tested one so I didn't need to test another one, which infuriated me as the 3rd was a one off chromosomal abnormality so there was no reason to assume the next one was the same or that it was definitely an abnormality again.

I am really sorry to hear about your grandma and how this is one of the many awful ways fertility struggles get in the way of us living our lives how we would like, so rubbish x

@Privatemedical246 at CRP it takes about one hour. I had one done at CRGH once and it might have been a higher dosage but that took over an hour an a half. Not much other advice, I was completely fine on them, like I hadn't had them, but bring something to watch or read while you're there as it's quite boring to just sit there with the needle in your arm.

Really sorry to hear your news @Ems123456789 Take care of yourself as best you can. ❤️

Intralipids at CRP take about an hour. Sometimes they might be a bit quicker or slower. Drinking water helps I find.

Sending love to all. X

@Privatemedical246 thank you.
re intralipids it depends on the amount. I had 500ml pure intralipid (that’s without the saline) and it took 5-6 hours. But I know some have less and it may be quicker.
Wear something comfy and take some things to do!

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

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.

@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

@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 ❤️

@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?

@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 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

@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

@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