Having a low day and need reassurance... - Fertility Network UK

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Having a low day and need reassurance and advice from those who've been where I am

Mudra85 profile image
35 Replies

Today is a hard day. I feel like my hope in getting a positive outcome ever with this horrendous process called IVF is seriously waning.

TRIGGER WARNING as mentions pregnancy and loss...

As some of you may know, 3 years ago I had an unassisted pregnancy that ended in a second trimester TMFR due to the baby inheriting and being affected by a genetic condition I'm a carrier for. In high hopes that because we'd achieved pregnancy previously we embraced the IVF process with genetic testing to prevent the same thing from happening again. 3 years since our first pregnancy, we've still not had success through IVF. We've transferred 3 tested embryos (although some better quality than others) and have achieved only a chemical pregnancy. The other two didn't even implant.

I naively thought when we started IVF that we were good prognosis patients, but clearly something isn't working and I just can't fathom it. I know not every tested embryo will lead to a live birth and that most of the time the issue lies with the embryo itself even if it does have the right number of chromosomes. Had I known back then that IVF would be this difficult then we wouldn't have bothered and would have tried without it despite the risks involved. I feel like my faith that IVF would work and resigning myself to the process has only wasted precious time where we could have been trying in other ways. Now I'm 37 and other options are not as easy as they once were, but it's still an option just expected to be a lot harder given my age and genetic condition I carry.

This is a very personal decision, but I'd like know what your opinions are on whether IVF is even worth continuing with? Can it really work for most people in the end or do you think cumulative IVF success rates are wildly overestimated even with tested embryos? Or should we be looking at trying to have our family in other ways, either unassisted (risky given our situation) or otherwise?

I'd really appreciate thoughts from those who've been through multiple failed cycles with good quality embryos in their mid to late thirties, who did eventually have an ongoing pregnancy and/or live birth.

Xx

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Mudra85
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35 Replies
Skittles11 profile image
Skittles11

Sending love and following, very worthy questions and am interested in what people have to say on this ❤️

Mudra85 profile image
Mudra85 in reply to Skittles11

Thanks Skittles, hope you're doing OK! ❤️

HedgehogMad profile image
HedgehogMad

Oh Mudra this journey is so horrible, I really feel for you and if it's of any comfort at all you are not alone in this. I unfortunately don't have a success story yet, but am also in the "good prognosis" group (moderate male factor, everything looking good for me) and we have had no luck with 5 blastocysts. I saw a professor in Warwick a few weeks ago from the RIF clinic who said he has seen lots of women go through multiple cycles/miscarriages and many go on to get pregnant in the end. It just is so unfair that some of us for no obvious reason have to go through so much trauma to get there.I think the decision as to whether IVF is worth it is individual, how much you are willing to put yourself through and how you view alternative routes to a family. Personally I think I can only put myself through this for another year or two, but who knows how I'll feel if we get there with no success - we may want to keep going. Following with interest to see what others think. I really hope you get the family you want so much ♥️

Mudra85 profile image
Mudra85 in reply to HedgehogMad

Thanks Hedgehog. I'm sorry you're still on this hellish rollercoaster too. It's reassuring what the professor told you. I've seen a lot of stories where people got pregnant and had a baby against all the odds and after a lot of failed cycles, so I know it can and does happen. I'm just struggling to believe it'll ever be us having a story like that and I find it so distressing not knowing what our fair will be. I hate that there are no guarantees. When nothing is clear cut, it makes it impossible to know what to do. There are no easy straightforward options. I think I'm with you in that there's only so long I can continue to put myself through this, but I also cannot give up on the chance of having a family. I want to get there as quickly as possible now, I'm sick of all the faffing around, disappointments and waiting, as I'm sure you and most ladies on here will be too. I just don't know what to do for the best anymore. The last 3 years have been a total disaster and I feel like I'm failing when everyone I personally know has been able to have children, even against some pretty big obstacles. Yet somehow we're still here despite being in the supposedly 'good prognosis' camp. I really hope you also get the family you want so much too ❤️

HedgehogMad profile image
HedgehogMad in reply to Mudra85

Yes I hate the no guarantees too and the whole uncertainty of it all. I'm sorry you feel like a failure, I personally don't see it that way, I just see it as really rotten luck and feel frustrated that we are doing everything we can and it's just not happening. It's not a personal failure, just being dealt an awful hand. I see how so many people struggle with different things in life (illnesses, bereavement, relationship breakdowns), I'm trying to see it as this is our particular battle, other people will face different challenges. But this one is really tough, and only people who have gone through it really understand 😔I think you have a good chance of it working out, it's worth seeing what your clinic think and maybe getting a second opinion from another specialist.

Xxx

Mudra85 profile image
Mudra85 in reply to HedgehogMad

You're right, it's not a personal failure when you're doing everything you can to make it work, it just feels that way sometimes. It is really shoddy luck. Most people will have difficulties of some kind, some more than others. I've been seeing this as our personal struggle too, but I find it hard knowing that it might never end. In some ways it'd be easier if there was some finality to it, even if we knew it would never work at least then we could start the process of moving onto other options. But it's the constant limbo that drives me crazy. I'm definitely considering a second opinion from a very experienced and well-regarded Doctor. Thank you for your reassurance, suggestions and advice, I really appreciate it! Xxx

MrsSarahC profile image
MrsSarahC

I was the same. 6 failed cycles and no baby - it was destroying me from within. I finally bit the bullet and used donor eggs after my wonderful Consultant told me 'use donor eggs or there will be no baby'. I'm so glad I followed his brutally honest advice, as we conceived our miracle son on our 7th cycle (first with donor eggs). It's not for everyone, but sometimes you need to change the recipe to get what you want, and I couldn't love my son more if I tried. Good luck to you, it's such an awful journey.

Mudra85 profile image
Mudra85 in reply to MrsSarahC

Thanks for sharing your story and excellent you had a baby in the end. I would consider doner eggs as it'd deal with two issues - we wouldn't have to worry about baby inheriting my genetic condition and younger eggs are more likely to lead to a healthy baby. The thing I struggle with is that we are still able to make euploid embryos and if there's another issue (aside from egg quality) for why our embryos aren't working that we've not yet found then donor eggs might still not work. Would you mind sharing why your consultant said to move to donor eggs? Was it age, egg/embryo quality, ability to get eggs/embryos etc?

Minminminminh profile image
Minminminminh

Hi Mudra, so sorry for what you have been through. I just wanted to share my friends story who went through 13 failed IVF cycles, across different clinics before finally getting her BFP at 40. Her BFP turned out to be twins and they are thriving three year olds now. It’s such a lonely, unpredictable journey. I have asked her why did she keep going, and she doesn’t even know. But she said at her worst she was in the kitchen cooking a chicken curry. All she could think was if she ate the raw chicken then maybe she would get so sick that she wouldn’t have to go through another ivf cycle. This was her breaking point, and so she took a whole year off IVF. It was after this year that she had her BFP.

Like you say, it is such a personal decision. My only suggestion would be to take it one cycle at a time. If it fails, can you mentally/financially/physically do another round. If yes, go for it. If no, take a break. But it’s never final, you may feel that you can try again at some stage in the future.

Sending you the biggest hugs and I’m sorry you are on this rubbish IVF journey xx

Mudra85 profile image
Mudra85 in reply to Minminminminh

Thanks for sharing your friend's journey and for the kind words. How your friend went through 13 failed rounds I don't know. That must have been so incredibly difficult for her. I'm not sure I can take a complete break, as I find I struggle more during the periods where nothing is happening. I also wouldn't want to given my age. However, there comes a point where if things just aren't working then what other choice is there other than to pause and regather your thoughts. Of course it's different courses for different horses and some really benefit from having a proper break. Thanks for the hugs, I'm sending you one right back xx

Joeysjourney profile image
Joeysjourney

Hello there. So sorry to hear of everything you've been through. Whilst I have never experienced the heartache you have I can say that I relate a lot to how youre feeling about ivf ever working.

Despite having a half decent prognosis, I've just had my worst round yet with minimal response to the stims and a likely cancelled collection. Decision to be made on Monday.

I feel completely deflated, defeated, failure, useless and angry all at the same time. 7 years trying, 3 ivf cycles and nothing to show. I'm 41 and soon to be 42 and donor eggs is looking more and more likely - how wonderful to have this precious gift as an option. Like you I also worry a donor embryo won't implant but I know it has a heck of a better chance than my wee eggs.

At this stage I don't even know if i have anymore left in me. We've went from bad to worse. I don't know where I'll get the strength. But I want a baby with my husband and I want both of us to experience it so I guess there's no option. I wouldn't mind a few months off to try naturally and give my body a break. I was on drugs most of last year.

Sorry I'm not sure I'm helping but I see you and feel your worry. It's in my head too. I hope we both get what we dream of xx

Mudra85 profile image
Mudra85 in reply to Joeysjourney

Hey, I'm so sorry to hear that your recent cycle might be cancelled. It's so difficult when these things happen! I would feel the same as you do, completely deflated, defeated, you name it.

7 years is a long time to be on this rollercoaster. My heart goes out to you. I agree it is amazing to have the option of donor eggs, but obviously not a decision to be made lightly.

I hope you get the baby you so want at the end of it all, but it's a pity it has to be this hard. It's utterly exhausting.

You have been helpful in just replying and understanding (from your own unfortunate experience) where I'm at currently. Here's hoping we both get there in the end. Sending you a big hug xx

Maria1122 profile image
Maria1122

Hi Mudra85, I'm so sorry for your loss... I'm in a similar situation as you. I am also 37 years old and I have transfered tested embryos that end up in failed transfers, I am doing my treatment in Spain, my doctor recommended that I check the uterus to see if there is any inflammation such as endometritis that cannot be seen with an ultrasound. Also now I am with the immunologist to rule out possible causes... in my opinion you can keep trying with your embryos because they are healthy but before doing any other transfer try to check all the possible causes well ❤️

Mudra85 profile image
Mudra85 in reply to Maria1122

Thank Maria, I'm sorry you're also in a similar situation. I have checked for endometritis and infections in my uterus and both were fine. I definitely think it's good to rule it out as a potential issue. I've also had some immune testing, but there's probably other things I could have too. I have high NK cell acitvity ans high Th1 and Th2 levels in my blood, but I'm wondering whether I should check these things in my uterus too. What has your immunologist suggested in terms of testing and potential reasons for your failed transfers?

Maria1122 profile image
Maria1122 in reply to Mudra85

I will let you because I need to do the blood work next week , but I said to him I want to test for everything possible . He didn’t say what can be the cause in my case because I had one natural pregnancy , and 2 IVF miscarriage and when tested embryos any of them stick …so weird and frustrating . My gynecologist believes it can be the uterus so needs to be check .. did you do hysterescopy ?

Mudra85 profile image
Mudra85 in reply to Maria1122

So often I think it's really hard to identify an exact cause, but hopefully your test results either provide an indication of what to look into further or provide reassurance that immunology/uterus are unlikely to be factors. It must be unbelievably frustrating for you to not know why.

I think it's always worth checking everything's OK with the uterus too. I have had a hysterscopy, which was all clear, and even though it wasn't cheap I'm happy I have that reassurance as it was something I was worried about. I would also like to have an HSG to confirm my tubes aren't affecting implantation. Are you condsidering having a hysteroscopy?

Maria1122 profile image
Maria1122 in reply to Mudra85

Yes, this is all very complex. The HSG test was the first thing I did and they were fine. At the end of this month I will have a hysteroscopy, I am very anxious about going into the operating room 😅😅 but I will do everything possible before another transfer , to make sure all is good. How many transfers did you have ?

Mudra85 profile image
Mudra85 in reply to Maria1122

I know it can be daunting going into the operating room, but I found it to be nk worse than having an egg collection. Not sure if that provides any reassurance. I hope it goes well, can't imagine it wouldn't. I've had 3 transfers.

Twiglet2 profile image
Twiglet2

I know it’s been a long time and a long journey but I would personally carry on as 3 actual transfers isn’t really that much in terms of IVF success rates of transfers, especially if one did implant. If the embryos are tested it would also be good to look at environment and timings etc to see if anything can be tweaked there to improve chances. The chemical indicates though that at least on that round timing etc. was right.

For a success story we created our successful embryo at 37 (which was embryo number 4 (transferred at 39) and he’s going to be 2 next month. We’ve transferred another 6 since then in hopes of a sibling and I’m still going 🤪 so maybe I’m not the best person to give an opinion, but you can only know in yourself if you still want to keep trying or pursue other ways. Also lots of ladies have had success with donor embryos which might help with the genetic carrier part, but as you’ve had some tested normal embryos I think I would try with my own a wee while longer personally. Good luck lovely I really hope it works for you soon xxx

Mudra85 profile image
Mudra85 in reply to Twiglet2

Thanks for the words of encouragement and for sharing your story, Twiglet. I really hope it is just a case of perseverance. I think what's worrying me is that this is 3 failed transfers with tested embryos (although the last two weren't of optimal quality for various reasons). There's a statistic out there about it taking 3 tested embryos to achieve an ongoing pregnancy, which I found reassuring at first but now just feels like it's really over-egged, as I've come across quite a few people like me who fall into the undesirable 5%. I have been trying to take comfort from the fact that I've been pregnant twice before and we can still produce euploid embryos.

I hope you're successful soon with having a second. Wishing you the very best of luck. xxx

Twiglet2 profile image
Twiglet2 in reply to Mudra85

I stopped looking at the stats a while ago as it can set you up for false expectations 😢 every journey is so different and for every person that it works first time for there has to be someone it takes 5 transfers to work for the average to be 3 transfers…. You got this lovely defo not time to give up hope 💕🤗🙏 xx

Mudra85 profile image
Mudra85 in reply to Twiglet2

I don't blame you, the stats can definitely give false expectations and it's just down-right depressing when you don't fall into the good stats. I've definitely had to readjust my expectations a number of times with IVF. Trying to keep holding onto that glimmer of hope. 🤞♥️🙏 xx

Twiglet2 profile image
Twiglet2 in reply to Mudra85

I’m the exact same some days it’s easier than others though 🥰💜 xx

Sarascottxox profile image
Sarascottxox

100% worth continuing....

My husband and I started IVF after trying for 2.5 years with no natural success. Frustratingly there wasn't too much 'wrong' with us other than I had slightly low AMH (but still within ranges that should work) and my husband had slightly low morphology (again doctors said should still work and even improved with supplements)

We too were told we were good candidates for IVF. Our cycle went well and we created 4 good quality 5 day blasts. I was relieved. Our first fresh transfer took and we were over the moon at our first ever BFP. This ended in a chemical and I took it so hard.

Our 2nd transfer did nothing. By this point I imagine I felt like you do now... why was it not working? Half embryos, the best two, now gone. I honestly thought about giving up cause of the emotional strain on both of us.

I went into the third transfer with little expectation. I'm now 36 weeks and waiting on the arrival of our baby boy 💙

I know many have had far tougher stories than ours but wanted to share mine as so many ppl told me in darker times ' it only takes one' and I didn't believe them. But it really does and I think based on your info you still have a great chance of success. I'm 36 nearly 37 too btw xx

Mudra85 profile image
Mudra85 in reply to Sarascottxox

Thanks Sarah, I do feel in my heart that it's worth continuing, but I'm feeling so fatigued by the process, disappointments and stress of it all. I know I want a baby more than anything so giving up isn't an option I'm willing to entertain right now. But I also wish I could know whether I'm flogging a dead horse so I can move onto better options if necessary.

I'm so sorry about your chemical, it's so crushing after initally seeing that positive test. My first IVF also ended in a chemical, so I know how hard it can be.

I'm so glad you didn't give up and you're nearly about to meet your little boy. I'm wishing you all the very best.

I really appreciate your kind words of encouragement, it's 100% what I needed to hear! xx

Habibi87 profile image
Habibi87

Hi Mudra,

I am so sorry to hear of what you have been through. IVF is extremely challenging and really quite hard to deal with. Don’t loose hope yet, 3 cycles is not that many . It took us 4 generically tested embryos for one to work (currently 31 weeks). First transfer was a chemical pregnancy. Second transfer BFN. Third transfer we put two euploid embryos in (against the clinic advice) and one implanted 💕 The blastocysts were made when I was 34. We did many tests to understand if there was an underlying cause for the failures, but there was really nothing conclusive. for example I had slightly elevated NK cells, so we added Intralipids from the second cycle which actually worked even less than first one, but intralipids third time maybe helped. I also had some unexplainable fluids in the womb at the beginning of each cycle which would gradually disappear. This didn’t happen third time, maybe due to a change in FET protocol of because of the Hycosy i had done. Sending you lots of love and strength xx

Mudra85 profile image
Mudra85 in reply to Habibi87

Hi Habibi,

I totally agree with you on how hard IVF can be. It's the hardest thing I've ever had to go through in my life and that's saying something. That must have been incredibly hard for you to go through 2 failed transfers with euploid embryos, but I'm so glad you're currently 31 weeks with your third double transfer. I think there are cases where people just fall on the rough end of the statistics, as the conditions under which implantation can occur and a healthy baby can grow and thrive have to be optimal, even perfect.

Thank you for the love and strength, that's really kind of you. I'm wishing you all the very best for your pregnancy and birth xx

JOSANDY40 profile image
JOSANDY40

I feel so with you for the stress that this brings on you. Unfortunately while pushing yourself to achieve this difficult treatment your causing stress, obsession, probably not having fun, living normally, self creating depressive thought.

The risks to your own health by doing IVF with later cancer.

I wish you happiness. Myself years on I'm happy that my IVF didn't work. To bring up children alone with my illness would have been impossible. I now have the freedom to enjoy my life.

Make sure you smile everyday

x

Mudra85 profile image
Mudra85 in reply to JOSANDY40

Hi Josandy, it's certaintly true that I'm not living the life I want right now due to all the stress and upheaval of going through IVF, but it's hard to imagine a life without children especially after having such a devasting loss a couple of years ago.

I've never heard that IVF increases the risk of cancer in the general IVF population. I'm so sorry for your illness. I'm wishing you happiness and the very best too in life. X

JOSANDY40 profile image
JOSANDY40 in reply to Mudra85

I feel if I was you from my knowledge. Yes devastating what happened to you. But you did get there to apiont . You wanted a child. I did too. So you should intracellular almost there. It's not negative. It's a step. Whether you achieve a child. If it doesn't workout your will have achieve all you can do. That's a longway. Be proud., not negative. None of us know what life holds, having a child or living past 68yrs isn't a given. All of us want the best, all of us have dreams. Some of us make adjustments to fit. Others get very low and bring negative in.

A rule is to stay positive, not over think anything. What will be will be! See the wider happiness. Never take negative thinking or depression will follow, brake you

For me it helped to destroy my marriage. Remember it's you and your partner. You and him come first, not a child as this is a selfish thought.

Be open minded, there's no right or wrong, day to happiness will be easier to find and stress/ low feeling will step back allowing light and sunshine in with smiles.

x

Seren0119 profile image
Seren0119

Please keep going...I was in your exact position (two miscarriages/chemicals from PGS normal embryos) but it eventually worked because I didn't give up. My lowest grade embryo at 38 finally worked after five years. I really really hate saying this, but it is often a numbers game. I have friends who have been on the IVF battleground for years and years - and they all get there eventually x

Mudra85 profile image
Mudra85 in reply to Seren0119

Thanks Seren, I'm hoping it'll all be worth it in the end if I keep on at it. It's stories like yours that give me hope that this can work. It's also really reassuring to know that you have friends who've also gotten there in the end with persistence. X

Axel131 profile image
Axel131

Hi Mudra, I don't have a success story to share with you just yet but I will say that please don't feel that you don't have time or it's slipping away at 37 if you feel you need to take a few months off. Although like you I feel better when I'm doing something than when waiting. I started IVF just because I'm taking the solo route, no other fertility issues. I didn't start until I was nearly 41, first IUI worked but had a late TFMR, several IUI's and IVF's later, second pregnancy, same abnormalities and eventually found I was a genetic carrier. Much debating about whether to go with my own eggs and do PGT-M testing but at 44 I had my IVF best round yet with 3 embryos frozen, none of which have my condition. I'm about to transfer my last one next month. If that doesn't work it will be a decision of donor eggs versus another try of my own. I'm part of a few genetic carrier groups on FB and there's a lot of people who try again naturally and take the risk, I wonder if I would if I had a partner. Some of these can have healthy successful pregnancies and others don't, it's a complete throw of the dice but it depends what you're comfortable with. It's really crap when you're a carrier that it's another thing you have to contend with but there are definitely success stories out there so it's just deciding what is best mentally for you. Wishing you all the luck with whatever decision you make.

Mudra85 profile image
Mudra85 in reply to Axel131

Thanks Axel and I'm so sorry to hear of the challenges you've had. This process can be brutal. I'm wishing you all the very best with your upcoming transfer. I have often thought about trying again unassisted, but it feels a bit like playing Russian roulette after the first time. I was also worried about the potential risks to having another TMFR, as the more surgeries you have the more there's a risk of doing damage to the uterus, which may cause even more issues. There's no easy option whatever route you go down though. I feel you with being a carrier of a genetic condition, it does make it harder to get embryos in some ways as you there's more attrition when it comes to testing. You can lose hard won euploids because they've inherited the gene condition. It's not easy by any stretch. Wishing you so much luck too!

jengi profile image
jengi

Hello lovely. I’m sorry you are having a tough time. It’s a crazy roller coaster. I don’t think success rates are over estimated but they are sometimes not easily interpretable & it’s not always meaningful to compare figures between clinics. The one thing I learned about IVF is that there is no guarantee it’ll work even in the healthiest of patients. For example we moved to donor (free feel to read my profile to understand why), our very healthy 23 year old donor produced 16 eggs, only 6 fertilised. That’s a 38% success rate or a 62% failure rate, depending on how you’d like to view it. I was told one in three eggs fertilising is about normal. Then between fertilisation & transfer so many possibilities of things not going to plan that I sometimes find myself thinking it’s a wonder it ever works! It’s an amazing scientific technology & im ever so grateful for it but the reality of success isn’t always well communicated. There is definitely a component of luck. If you have the determination (& in some cases the money) to keep going then it should work eventually. For us, it was our 7th attempt & £17k. And it was worth it.

After our 5th attempt, I asked for an appointment with the embryologist. The best thing I ever did. Having that 1 on 1 discussion with her, quizzing her on what my eggs looked like, what was happening at fertilisation, how were they cleaving & dividing? This was probably the most insightful discussion I ever had at the clinic. Really made me understand & face the reality that my eggs were really poor quality. So I made the hardest decision to move to donor eggs. I was so desperate for a baby, that I’d have done anything.

Never give up, you’ll get there eventually. Sending lots of love Xx

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