Looking For IVF friends/support

[ADiddles]

Hi all,

I’m just searching for some support/ friends/ success stories of IVF.

I had my first round in Jan 2021 and had short protocol and collected 3 eggs. 2 fertilised and we transferred 1 embryo. Had a miscarriage at 6/7 weeks which was devastating.

Had another round in May/ June of 2021 with an estrogen priming round. Came on early, told the clinic they told me to carry on and then when I had to call to find out when I needed to start injections the new nurse I spoke to sounded horrified that I’d come on my period early and needed to speak to the doctor. Had an emergency scan and they said things should be fine to continue but one follicle was slightly larger than the others. I was also told on this round that I had low ovary reserve and a AMH of 6.6 (I was 29 at the time so wasn’t really told if this was good or bad just said if it was 5 or 6 then definitely 3 round but more than 6 I had the option of 1 or 3 so went for 1 because of cost) anyway, continued round was told in my clinical plan that I would have a double trigger because my first round produced an immature egg but wasn’t given the second trigger and then was told to have sex less than 48 hours before egg collection. 5 eggs were collected; 1 too large, 1 immature, 1 abnormal and 2 healthy but no fertilisation.

Our consultant said about egg donor which I don’t want to do and was devastated about as I’m young and I can clearly make eggs (albeit a small amount, and I can get pregnant) or to go for 3 round of mild IVF. We have been on a break from treatment since June 2021 as I’m terrified to go back and my mental health was massively affected.

I would just like to find some reassurance and some friends really as I feel so alone. Hopefully, I can support you on your journey too! Please feel free to get in touch

@ADiddles hey, so sorry for your losses and that you are also here going through this journey. I wish no one had to.

I know exactly what you mean when you say your worried about going through treatment again and the impact on mental health. We have been on a break since August and we are just about to start up again and I get randomly overwhelmed at the prospect of going down this dark hole again as before but I need to try to succeed.

If I were you I'd try the mild IVF so you can get the best quality egg and hopefully embryo once fertilised. Has you partner had DNA frag test done as there could be a sperm issue that isn't identified in a standard SA. I think this test should be standard as it could save a lot of heartache, and especially do it before moving to donor eggs

If you don't think your consultant will try enough with your own eggs, you could get a second opinion.

When do you think you might start treatment again?

Hello! @Hoping4baby21 thank you for replying to me. Was beginning to feel really isolated and alone.

I’m sorry to hear that you’re having to go through all of this too. It’s a club no one wants to be in.

No he hasn’t had that test done. I didn’t even know about it. Our consultant was almost adamant last time that it was purely an egg quality issue even when I suggested ICSI as neither of my 2 healthy eggs were fertilised, he was very dismissive and only suggested the Mild IVF or egg donor which I really don’t want to do as I’m young-ish (30) and got pregnant previously with IVF.

I also feel that our clinic/consultant made mistakes on our second round which contributed to the failure.

Please keep in touch about your current cycle. It’s so emotionally draining isn’t it and takes a lot of courage to go back into somewhere that causes so much trauma. I’ll have to build up the courage to be as brave as you.

Hope everything goes well for you this round. Keeping my fingers crossed.

@ADiddles if I were you I would get a second opinion. It sounds like you may have lost a little confidence in your consultant and aren't sure if you are getting the best treatment there. It can't hurt to speak with someone else.

They always focus on the women, the NHS put me through a whole surgery only to find nothing and refuse to do a dna frag test, turns out we have dna frag! Maddening. Id book the test at another clinic if I were you.

What mistakes do you think he made?

I have to get a dummy transfer and 3D SIS done in a few weeks and I'm hoping to start shortly after that just hope the timing works. I'm super worried and it won't and I'll have to wait another month!

Hope you find a treatment plan that works for you for your next round!

@Hoping4baby21 I definitely feel like I’ve lost confidence.

Basically our first round we got an immature egg and on our clinical plan for our second round we were given a double trigger shot as well as estrogen priming.

I started the estrogen tablets to help the follicles grow simultaneously. I came on my period early and called the clinic the nurses told me it was normal and not to start injecting early and that I’ll have another bleed on top of my period and to start injecting 3 days after that, I questioned it but they said yeah and to continue so I thought they’re the experts they know more than me so followed their advice. I called back a few days later once I’d finished taking my estrogen tablets and asked when I should start injections and they said when I start bleeding and I said I’d started bleeding 5 days ago and that when I called I was told not to start injections early and to carry on. The nurse was like “oh ok let me check with the doctor straight away” when she called me back I had to go for an emergency scan as she said that it wasn’t right that I’d started bleeding early and that I’d continued without injecting.

At my emergency scan the doctor said I’d got 5 follicles growing well but one was a little bigger than the others but nothing to worry about.

At my final scan before egg collection he said one was still bigger but shouldn’t be a problem and one was a little smaller. I asked about the double trigger because I had a smaller one that was immature on my first round and that the double trigger would mature any smaller immature ones and I’d been prescribed the double trigger and he said no don’t do the double just do the one trigger shot.

We were also told at this appointment to have sex as we had sex on the Monday and on Wednesday we were told that egg collection would be Friday but would have been too long to abstain so the nurse told us to do it that day.

Egg collection day they retrieved 5 eggs. Low and behold 1 too big, 1 immature, 1 abnormal and 2 healthy but no fertilisation. The embryologist called it bad luck and my partner asked if we hadn’t abstained long enough and they said up to a week would have been fine so we were told the wrong information there.

When we asked the consultant in our follow up consultation about the double trigger he was quite snappy and said “how would I know if it would have worked!?” And that I should look into 3 rounds or donor egg as it is an egg quality issue and not an issue of the sperm not fertilising the egg. Despite me having 2 healthy eggs.

So a very long story but really knocked my confidence.

@ADiddles omg! No wonder you have lost confidence. It sounds like they really did mess up and all the conflicting advise! On top of that they won't admit their errors or give you some explanation or answer which will only make you wonder how you could possibly get a different outcome next time.

I have had one cycle where a bunch of follicles were behind the main cohort of follicles and remained stubborn and didn't catch up. My new consultant has recommended adding in HGH (human growth hormone) to my next cycle during stims to get not even growth. Seems similar to your estrogen priming. I've also heard people priming with HGH Perhaps you could ask about that?

I think the least we can have when going through this process is peace of mind that the consultant has our best interests in mind. You deserve at least that. You don't need to put up with his dismissive attitude their are others out there who can also help you.

@Hoping4baby21 We are looking into a new clinic but unsure where to go. If you don’t mind me asking what clinic are you with? They sound like they’re willing to give you more options. The clinic I was with seemed very rigid with only the mild IVF or donor eggs.

They definitely won’t admit any error on their part as it opens up a whole can of worms but leaves me with so much trauma of thinking that I’m a lost cause and that I’m in the wrong and not them. It’s hard feeling like you’ve been failed by the people who are meant to help you succeed on this journey but no one actually admits it.

I'm with CRGH in London but I think they have one or two other clinics around the country. I have also heard great things about the Lister clinic in London as well.

When I met with my now consultant it just felt right, she answered all my questions, I didn't feel like a bother. She advised me on tests I had considered asking about and said she wouldn't recommend others due to no indication. She wasn't interested in unexplained she said that the cause is just not found and she seemed committed to doing our best by us and getting us pregnant. I know their are no guarantees BUT I know I will feel like we did all we can under her care that if it doesn't work after all our cycles. I might be in ok with knowing that and finding an alternative way of life.

I am so sorry for your losses and all the pain you've been through.

I got an IVF BFP last week, so currently I am in a state of total panic that something is gonna be wrong, or the tests are false. How have you been?

@IsabelHerna congratulations! Don’t let the panic spoil your euphoric moment and well done to you! It’s hard work but you’ve done it.

I’m ok thank you just plodding along with life and trying to do lots of things to take my mind off. I hope you’re feeling well in general. xxx

@ADiddles how are you? Any luck with a new consultant? I've finally got my nurse consultation booked so we have a date. At the moment in excited but I'm sure the fear will set in also. Also start a new job the same day I start meds so this is gunna be fun! Lol

@Hoping4baby21 Hey! I’m ok thank. Hope you’re well too. I’ve been trying to just keep busy to help my mental health. Wow how exciting that you’ve got a start date! I wish you so much luck. I’ll be keeping my fingers and toes crossed for you! And a new job, congratulations! We have asked our current clinic for our medical records but they can take 28 days to be sent so we’re just waiting for those and then we will transfer them over to the new clinic but we will have to pay for their fertility testing too so trying to save up for that.

@ADiddles ahhh ok, yes it annoying that they take so long to send you the records. Yes it's annoying to have to pay out for the testing again but I try to think of it that it's them being thorough and every new data point helps you make informed decision.

I noticed this group and you guys are such a good support for each other, good luck to everyone, I have just been through my first failed cycle and there is just something bugging me, when they did my transfer they told me to have a full bladder, but they didnt use and ultrasound on my stomach I thought they would to guide it to the right place? any advice? just getting some info before my follow up consultation so I can ask the question there. My gut feeling was also my lining needs to be better, it was 7mm and they said that was fine but does anyone have any advice on this? it seemed to me only just 7, I would of felt better if it was like 9 but what would be to thick?

@Luluspies hello! I’m glad you’ve reached out to someone. It’s always good to chat to people in the same situation. I’m really sorry to hear about your first cycle. I hope you’re ok. I’m not sure in terms of implantation but I know that when I had my first embryo transfer I had to have a full bladder but they also used the ultrasound to guide because they also gave me a picture of the embryo once it was transferred. I’ve had a google on lining thickness they mentioned 7mm was ok but other hits mention a thickness of 8mm was ideal, I would definitely ask lots of questions at the follow up meeting.

@ADiddles Thanks for your reply, hopefully next round they will blast me with double the drugs get more eggs as I don't have any frosties this time so got to start again with stims and maybe a thicker lining will help god u just go over everything and analyse everything don't you! But yes I will ask lots of questions, I'm ok just got to focus on the next round! Hope Ur well too xx

@ADiddles that's me lulu'spies I don't know why it wouldn't let me reply under my normal screen name not sure what's going on haha

@Hoping4baby21 yeah I’m hoping that the new tests give them a better insight as I’ve seen your story and it looks like your consultant is so good with offering you the HGH. I’ve researched into that and it seems positive. I hope they just give us more care and compassion and don’t make mistakes when we go again.

@Luluspies @Waitress901 I didn’t have any Frosties from either round try not to worry about it too much. You’re right you go over everything constantly, I fell and often still fall into the horrible pit on blaming myself despite being told daily it’s not my fault. You’re well trained in stims from the first round so it feels easier. I asked lots of questions about medications that may be able to help and diet and exercise. I’m also having acupuncture which is meant to help. I don’t know if you wanted to look into it before your next cycle to help with implantation.

Thanks I have read up on the acupuncture stuff and I'm going to try more of a Mediterranean diet see if that helps! Ya never know!

@Waitress901 I'm sorry to hear about your failed cycle. I hope you are doing ok. I second what @ADiddles said re lining I don't have a ton of experience but I have heard over 8mm is better. Although implantation happens with less so it may have just been the embryo. I'd deffo ask though, the more info you have the better.

@ADiddles thanks yes she's great. Had a little wobble with them because they were taking an age to give us a date for the nurses consultation and we kept having new things pop up but all sorted now and in the end they were clear with me just had to get hold of the right person. I can also email my consultant's PASSWORD with questions and she responds really promptly. I hope that you find a clinic and consultant that feels right to you.

I haven't done too much research into things as I get too carried away and it's a bottomless hole. I'm just trusting what she's says a brief look online to understand a little better and then calling it a day. I think our meds bill is going to be WILD! I'm just hoping we get a good number of embryos 🤞🏽

@Hoping4baby21 yes 8mm sound better doesn't it, thanks for the advice! Good luck for Ur next cycle how many have you done?

@Waitress901 just the one and then we took a break. Old clinic wouldn't try anything different, workplace issues, failed transfers etc meant shit mental health and needed to recoup.

@ADiddles thank you! I am starting to come to terms with it slowly...

How is acupuncture going? Is it helping you stay calm and relaxed? I added massages during my cycle to keep me as calm as possible.

@Hoping4baby21 hope you are doing ok with your MH just reading your posts are you taking any time off work? My doctor said to me in this process always put your self first dont be scared to take time off. I was actually wondering if you guys can give me some insight with the whole IVF/work balance. I didnt feel like there was much support from my work, I felt like I had to just tell everyone about it in order to get the support even though in reality I didnt want to I was really stressed about it all at first thinking what am I going to do about work. They just didnt seem to know what to do with me, there wasnt much in the policy, no one really understood how much goes into IVF and I had to change my duties after EC. my cycle failed and in all honesty if it wasnt for the fact that I was on leave due to a family birthday I dont think I would of been ready to go back to work. It gave me n idea tho Im working on content for my work place that will give support to staff going through fertility treatment and try to get more information out there. So how did all you guys manage with work was there a good level of support and did you feel ok discussing things with them?

also forgot to ask after a failed cycle did anyone else just have the headache from hell for days and feel dehydrated?