Immune/ NK cells - Pred threat 27

[LaurenAB94]

@Bambii @Daffodil21 @Eeviee @Everhopeful35 @farfromperfect82 @Eeviee @Everhopeful35 @Hazlet2 @farfromperfect82 @HoldingOn2Hope @Jellystar23 @KtAgs @Lalaifa @LookingforAnswers86 @Marabouchoc @LRL12 @MrsMargot @Naticle @NessyT91 @NessyT91 @NICK7nick7 @rainwillmaketheflowersgrow @Rebecca9876 @Sophfr17 @Tinpo @VenusStarr @Wheresmyrainbow @Whyisthistakingsolong

Hi everyone

@VenusStarr I’m sorry, that must have made you feel shit going straight to mentioning surrogacy! I guess it‘a good they’re trying to identify issues as often clinics will just say it takes a few cycles to have a successful pregnancy and I’m sure that is true for lots of people. For what it’s worth lots of ladies who go to the clinic I looked at in Greece have had success after hysteroscopies, either naturally or with IVF and many had multiple failures with IVF in the UK beforehand. It may just be exactly what you need as the final piece of the puzzle but it’s so hard having endless tests and procedures. I think I’ve asked you before and you did have acupuncture? I know it can help with lining issues/blood flow.

It looks like I’ll be leaving my job at the end of the month (still a few things to sort out but they’ve made me an offer which is a start). I’m still incredibly angry but need to move on. AF came today just 3 weeks after last time so my cycles are crazy again. I am toying with trying letrozole this month and seeing what happens!

@luckyducky2 thanks so much for responding! Yes I think it's the pred because I usually never get sick at all! Thankfully I'm due to wean off Wednesday so I'll just stick it and hope this cold doesn't progress. A cold in itself isn't dangerous I've read it's just the fact that a virus might set might immune system off which worries me. What are you suppose to do if you catch covid wean off it straight away? I'm not with Dr S. Good luck with your next transfer xxx

@Tumby I'm good thank you. No I'm not on the complex plan. I was on prednisolone and progesterone until part way through second trimester but I hadn't had any tests so I just took them to give them a go tbh!

They were fine thank you @Tumby, quick and easy. I feel under so much pressure to get pregnant though. I just feel like it's not going to work x

Hi everyone, sorry not replied in ages. Been really really low. Will reply to everyone soon. Thinking of you all xxx

Hi @Rainbowdreams1983 I've been thinking of you (hope you don't think that's weird!)) sending love 💜

@treesall 🤞 for you for this cycle

@Badlydrawngirly I'm sorry to hear about your job, in one way its good that this chapter is closing but I can imagine you are having lots of mixed emotions right now 💕

I had my follow up with Dr S yesterday and it went really well, he was very supportive. He doesn't feel I need another hysteroscopy (I had one in 2019). Instead he thinks the triple test to look at receptivity, endomitritis and microbiomes (ERA / ALICE / EMMA tests) so essentially a mock cycle, which would make more sense. So we need to book in with our ivf clinic to discuss and see if they're OK with me not doing the surgery and if they'll take on board the outcome of the tests. If they're insistent on the hysteroscopy, I'll do it through crp, Dr Jan does the surgery. He is keeping me on the same immune plan. Plus he thinks the embryo was likely normal based on our history and thinks it was something related to my implantation window. I'm really pleased we have a plan and that Dr S was open to exploring things with us. He did say he thought perhaps our ivf clinic were clutching a bit and wanted to offer us 'something' as they're a bit out if their depth with recurrent losses and I would agree with that (not to be negative about them) so I'm glad we have Dr S on our side. We're going away next week, so I'm going to take a break and revisit this and book appointments etc when I get back.
Still no sign of any period, although I had cramps this morning...

Hope you're well @Daffodil21 @Luckyducky2 @Tumby @Unicorn9 and anyone else I've missed! Xx

Sending you lots of love and strength @Rainbowdreams1983. I hope you are ok.

Can anyone help me please, im a bit confused! Dr S's plan days take progesterone from ovulation. Should I take it today when I have a positive ovulation test or in a day or two when I should actually have ovulated? I didn't think to ask before.

Thank you x

@treesall I usually wait until I'm 2-3dpo before starting progesterone, so a couple of days after positive opk. Do you do your temperature too? Xx

Thank you @VenusStarr, ok I'll wait a bit then. No, I don't temp. I know I should but when I tried it i didn't get any kind of pattern and I kept forgetting and then it really stressed me out. It's already such a faff doing opks I can't face that as well!

Really glad your Dr S appt went well. Sounds positive to have a good plan in place. I hope your clinic can work well with his suggestions too. X

@NImama how are you doing now? I hope you’re feeling a bit better and more level. I saw Dr Hinter yesterday unexpectedly. Wiped and had a bit of blood in work and that sent me into a complete and utter panic. He scanned me and thank god the baby was ok. He reckons it’s coming from my cervix (maybe the cyclogest pessaries?). Now I am totally back to square one in regards to my anxiety! 10 weeks today which is hard to believe

I was wondering if any of you ladies could give me an idea of what Dr S recommends for his medications and when to stop certain ones? I am currently on clexane prescribed by the recurrent mc clinic at my hospital until 20 weeks, but I saw a Dr privately after my 5th loss and he is saying to continue to term. I am on 20mg prednisolone and I have to start weaning off from 12 weeks and to stop cyclogest from 16 weeks. Is this in line with Dr S? TIA

@CherryO88 sorry to hear you had some bleeding. Just to hopefully help reassure you a bit - I had a red bleed just before 7 weeks and they said it could be because of the Cyclogest. It lasted one evening and one morning (not through the night), then it stopped and hasn't happened since. Can't help on the rest of your questions though, sorry

Sorry I have been quiet. Been quite neurotic these past 2 weeks. I've found ttc again after so many losses harder than I thought. No luck last cycle. Been for ovulation intralipids again today. Exhausted after such a long day although it was nice to have a break from work which has been very busy

@VenusStarr I'm glad to hear your appointment went well and you have a plan in place. Definitely sounds good to have Dr S supporting you. Thank you for thinking of me. I've been miserable and shut myself away. Will be OK.

@Tumby this is our second cycle of ttc on the complex plan. I have everything crossed for you. Like you I was gutted we had no luck last cycle

@treesall, glad you have had your intralipids. Got everything crossed for you. I agree it's an added pressure!

@badlydrawngirly I'm sorry to hear you are still having issues with work but pleased you have been made an offer and can hopefully leave all the stress behind soon of that role

@Daffodil21 not long to go now!

I'm sorry if I have missed anyone. Hope everyone is ok ❤

Xxx

Hi ladies. Hope you are all well, and hope it's ok for me to jump on board?

Bit of background, I'll try to keep it short.

I fell pregnant with my first last March, and sadly miscarried at about 6 weeks. I was devastated but naively thought it was a one off, but went on to have another in July last year. Question mark over a chemical in august but suspect it was actually residual hcg. Was referred to RMC who did all the tests and they all came back as 'great' so they said I'd have progesterone next time. Next time came in March this year and while I had a few little bleeds, it seemed to be going better. Early scans with EPU showed nothing certain and blood tests then confirmed hcg wasn't doubling so they diagnosed another miscarriage. I opted for a mva so they could test the tissue but a couple of weeks after I almost collapsed at home and I had to have emergency surgery for what turned out to be an ectopic that had been missed.
I went from planning our next steps (Mr S) to now losing a tube and not really knowing where we stood.

I have still booked to see Mr S which is in early august, as the wait was so long. I didn't want to get a few months down the line and go to book only to find it's 2022!

However I'm apprehensive as I've been reading the thread in readiness to post, and the thought of potential cost and side effects is really worrying me. I don't want to get into a situation I have invested loads into but can't take it further. And I know it sounds silly in the grand scheme of things but I don't want to suddenly have loads of negative effects just to make me feel worse than I do.

I guess I'm worried the ectopic puts us in a different category than recurrent miscarriage, although I think the losses I've had has been more than I'd say is 'normal'.

Has anyone had ectopic discussed with Mr S? Does he include this as a loss in terms of his recurrent miscarriage expertise?

I'm excited to have a plan and try again, it's just suddenly dawned on me what a long road we might be facing. I'm sure I'm not alone in saying how sad I am that this journey has come to this.

I've read the thread and I'm so sorry for you all going through this, and so so delighted for those of you who are pregnant or have had your babies.

I joined a thread like this with my miscarriages and it was such a great support, it's lovely to see another thread with so much support in it too xx

Hi everyone
We're coming to the end of this thread I've had a message to say it's getting full if someone would like to create a new one and then put the link at the top of this page 😊 xx

@Rainbowdreams1983 I'm so sorry you're in such a tough place. I'm really thinking of you.

@myrainbowjourney I don't have any experience with an ectopic, but I did have a complication (partial molar pregnancy, not diagnosed until several weeks after mva) following my last (4th) loss, and Mr S was very reassuring about it when I went to see him. He basically said that was a random one off in addition to the cause of the other miscarriages, so didn't really worry about it. Obviously your situation is different as mine wasn't ectopic but he was quite reassuring about the chances of success under his plan, regardless of the additional issue with my last pregnancy.

I've only just started treatment with him so not sure how it'll pan out... x

@myrainbowjourney I've had 5 miscarriages plus a ectopic/PUL (pregnancy of unknown location - basically they couldn't find it but I had high hcg and did miscarry it eventually at 8 weeks) and Dr S said it was just one of those things, totally random and they don't know why it happens so I dont think it will be related to your other miscarriages thankfully. So sorry for your losses but you're definitely in the right place for support as we're all in the same boat! I was sick with worry about the cost of Dr S as we are travelling up and down from Scotland but honestly it has been a bit more manageable than I thought with appointments spaced out (though I'm not sure i could afford monthly intralipids that he advises for some people!). Im afraid I just say to him, thats out of our budget if something is too much! Best of luck for your appointment in August xxx

@VenusStarr so glad you have got a plan in place, i hope you are feeling a wee bit better? Have a wonderful break away and hopefully you'll be feeling like a new woman when you get back! Xxx

I've got my intralipids at CRP this week, before my next embryo transfer which should be around 10 days after.....after waiting so long it suddenly feels like its all coming really quickly!! Eek! 😄 We are going to transfer 2 embryos this time....fingers crossed 1 of these sticks! I'll keep you all posted girls, cross your fingers for me please!! 🤞

Hope everyone else is doing okay xxx

Thank you @treesall @Luckyducky2

I guess I'm just worried Dr S is a bit unnecessary at this stage of the ectopic isn't linked. If you know what I mean? Think I'm just terrified to spend loads of money and him say there's no issue. While no issue is great, I don't want to feel like I've 'wasted' money. It's all a bit catch 22 isn't it.

I am on the other hand excited for the appointment. As lots of you have said, the nhs RMC is great for when I get pregnant, but I'm sure there's something in the before which will help.
My cycles are long and it just makes the wait unbearable. I'm hoping he might help with that but not sure if it comes under his treatment. He might just tell me to stop whining and be patient. Anyone had any treatment from him to shorten cycles?

I've emailed my nhs consultant to ask if she will carry out the hormone bloods, as my latest ones were around October last year so won't be valid. That should save some pennies!

@treesall so have you had your results and now on his plan?

@Luckyducky2 all the best for your transfer. It must be so nice to know things are happening over the next couple of weeks. Fingers tightly crossed for you 🤞🏼

Sending you all lots of love and luck on your journeys, and thank you again for having me here xxx

@myrainbowjourney have you tried acupuncture to help reduce your cycle length?

@Luckyducky2 good luck for your transfer!!

@Daffodil21 I've been having acupuncture for a while but not specifically for cycle length, just general fertility. Maybe I will mention it - thank you xx

Hey everyone, just dropping by to say hello. Haven’t caught up properly yet but hope you’re all ok!

My last day at work is Wednesday so I have 3 days to do a handover which is quite stressful. I was signed off agin last week.

Just had my NK cell biopsy results back and they’re all normal. I’m slightly shocked!

@Badlydrawngirly I'm so pleased to hear you finish work very soon. I hope the next few days go as quickly as possible. Do you plan to take a break from work for a while?

Did you have the biopsy with quenby? Its always hard when you get results back that don't show anything. I think miscarriage tests must be one of the only areas of our health we hope they find something wrong

@venusStarr @tumby @treesall I wondered if you have encountered worsening issues getting through to CRP clinic? I can never get through to reception which I have got used to but considering how much we pay I think its awful, surely they are not always away from the desk. I have usually been able to get through to the nurses via phone after a few attempts but no joy. I had to email and it took them half a day to reply which is incredibly frustrating when you are trying to arrange an appointment around work. I asked reception if there was an issue with the phones and she was quite abrupt we me saying she can't always be by the phone and the nurses were short staffed. Just wondering if anyone has any tips to speak to someone? I'd expect more from the clinic for how expensive it is. Sorry for the rant lol. The only good thing is I've been told if we get pregnant we can book the 2 weekly appointments in advance which will save alot of mither.

Xxx

Hi @Rainbowdreams1983

My consultant did it but it’s the same test as Quenby does (the biopsy) rather than the blood test. I was so sure I would have raised levels as I have an autoimmune condition.

My boss has been awful today, trying to get me to do some work that she told me she had picked up weeks ago! She’s just angry that she couldn’t push me out without a fight I think!

I’m going to take some time off and look for something part time I think. I just want this awful six months to be over.

Hi @rainbowdreams1983 - I agree with you re not being able to get through. I waited nearly a week the last time I booked my intralipids & then they got me confused with someone else. I do find the receptionists to be really rude. Especially, like you say, given the amount we're paying. I had my follow up with Dr S last week too & I just get increasingly frustrated with how quickly he just wants you out of there! Our appointment was literally 5 minutes long & I feel as though there are still so many unanswered questions. I think we're going to try the superovulation but I left feeling more confused than when I went in... I may just follow up with an email but I do find it very draining. The nurses are lovely though, thankfully! I almost feel he thinks he doesn't need to bother with bedside manner because of his success rates. How're you feeling now btw? A little better I hope xx

Feeling pretty worried at the moment also as my NHS gp has run initial ovarian cancer tests & my CA125 is high so I'm terrified that it's that...next step is a scan but I'm hoping and praying its 'just' a cyst. Has anyone had anything similar? I know it's not pregnancy related but would be grateful for any insight...

Glad you're getting out of there @Badlydrawngirly - you'll hopefully feel amazing once you're rid of them!

@VenusStarr good to hear of your plan. Isn't it your birthday soon? Hope you have something nice planned xx

Hope everyone else is doing ok xxx

@Tumby I'm glad its not just me who thinks that. I agree the nurses and midwives have always been lovely. You would think for how much money the clinic must be generating they could invest in a permanent receptionist to answer calls. I've only had two appointments with Dr Shehata, one for initial appointment and the other for the follow up, protocol discussion so not got much experience of talking to him. I'm sorry you have felt more confused after your appointment. Did the nurses to you with your query? That's rubbish they confused you with someone else!

I'm doing the best I can. Keep plodding on. I'm getting anxious with covid19 cases rising again and the thought of being in the office at work if we get pregnant. I honestly don't think I will be able to go. My work are very supportive and I'd be able to work from home with some adjustments I'm sure. Its just a massive fear of catching covid19 and it affecting a future pregnancy. Getting panicky thinking about it. I've had both vaccines with working for the nhs but I've been hearing of people getting it despite that which is worrying.

When is your scan booked for? I'm so sorry you have all of this worry on top of everything else. I don't have any experience of the cells but I have had experience of being on the cancer care pathway when rpoc from loss one was mistaken for cancer, the wait to see the oncologist was awful. I have everything crossed its a cyst and really hope you don't have to wait long for your scan xxxxx

Hi ladies. Seems the hits keeps coming. Managed to get to 10 weeks on pred, clexane, progesterone and folic acid. Went for harmony test on Monday where when I noticed the nuchal was thickened on baby. It has been a few days of torture. Today I had a scan with a fetal medicine consultant who confirmed elevated NT of 5 and possibly a cystic hygroma. Very chance chance of chromosomal issues. To make this even harder, my 2nd pregnancy was a TFMR due to T21 and awful heart defects (not picked up till 20 weeks, I live in NI). I suffered 4 subsequent mc and now this. I cannot believe it. My head hurts from all the crying