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Don't know how I will cope with further rounds

(18 Posts)
PegPeg Tue 01-Mar-16 14:44:46

My partner and I just had a first round of IVF, using eggs I had frozen 4 years ago following treatment for a rare cancer in which my ovaries were removed along with my spleen, appendix, gall bladder, half my large bowel, my peritoneum, part of my diaphragm and part of my liver. I was luckily able to keep my uterus.

I was single at the time but chose froze eggs rather than embryos with donor sperm, in the hope I'd meet someone special who would want to have a child with me.

I recovered well, and I did eventually meet that special person and we plan to spend the rest of our lives together. We both want nothing more in the world than to start a family together and we spent ages researching the best places to go and who could give us the best chance. We found a clinic we felt confident in and after a long wait we started our treatment.

We had however been told the chances of my eggs surviving the thaw would be low (they were frozen using old methods). We had totally prepared ourselves for the likelihood of having no embryos to implant. We knew we would probably end up having to use donor eggs.

We were therefore utterly surprised, delighted and elated when we ended up with two excellent quality embryos. We felt like life was finally working out for us. I felt like I was finally being rewarded for my bravery and patience and about time too, as I've not had it easy since the cancer.

Both embryos were implanted two weeks ago. Our hopes were raised when we were told we stood a really good chance of getting pregnant. And I really thought I was pregnant... I really did... We were making plans.

I felt like it couldn't go wrong, it just couldn't, because that's would be so wrong and so unfair, after everything I'd been through with the cancer and after we'd got so far with the treatment.

We were SO not prepared to get a negative result when we did the pregnancy test. But we did. We are completely shocked and devastated. It seems so utterly cruel that that we got so far and our hopes were raised so much, only to suffer that huge disappointment.

I have no more eggs. That was our only chance to have a child that was genetically ours, and the loss we feel is indescribable.

Not only that, but I now find myself feeling hopeless for the first time. While I would be OK with using donor eggs, I just feel like I just don't have the strength to go through all of that again. It was just so hard, physically and emotionally. If I knew for sure it would be worth it and that we'd end up with a baby, I'd do it, but I'm so worried now that I'm just not able to carry a child at all. My embryos were top quality and my womb looked in great shape according to the nurse, and yet it didn't work. So now, for the first time really in all of this, I'm having to face up to the very real possibility that it might not ever happen for us.

It feels like it would just be so much easier to give up. But I feel like I owe it to myself and my partner to try again with donor eggs. I just don't know how I'm going to cope with going through it again... I'm so anxious about the thought of it, and possibly having to do even more rounds after that, and the likelihood of suffering more disappointments, and after everything, not ending up with a baby. I just can't imagine how we'd deal with it; it feels we've had to deal with enough struggles and enough heartache for one lifetime already and I don't feel I can take any more.

You guys who have been through multiple rounds, how on earth did you find the strength for it? And for those of you for whom it didn't work out, how are you moving on with you life?

SesameSparkle Tue 01-Mar-16 17:13:46

Hi Peg, I’m very sorry to hear about your failed cycle. It is devastating to deal with failure, following so much hope. I have been there a number of times myself. I can only advise that things do start to get better day by day as you come to terms with your loss and start to think again about what your options and next steps might be in the future. You can and will find the strength to carry on if that’s what you choose to do.

PegPeg Wed 02-Mar-16 12:07:06

Thank you for your kind words and reassurance, Sesame. And I feel for you, with everything you've been through (and really admire you too). Where are you at with this all now, if you don't mind me asking?

I'm consoling myself with two thoughts. One is that I've learned that any time in my life I've felt intense grief, I've always ended up feeling much better, eventually. The other is the fact that if we REALLY want to start a family that much (which we do), we will find a way, whether it's through multiple cycles or ultimately through adoption.

If we have to wait 5, 6, 7 years for our little one, just having the knowledge that we'll get there some way or other gives me the strength to carry on. (I suppose there's a chance we'd not be considered suitable for adoption, but I've investigated the criteria and can't find any possible problem there. I'm aware the waiting list is crazy long... but hey ho.)

I really feel for you and everyone else who has to go through this incredibly difficult thing, a thing will never be understood properly by someone who hasn't been through it. At the same time, it helps to know I'm not alone.

I'm dreading my period though sad x

AnnaMarlowe Wed 02-Mar-16 12:18:26

I remember how devastation our own first failed cycle was, and I had none of your concerns so you have my very deepest sympathies. flowers

Let me reassure you a bit though, our fertility issues are due to a problem in my DH's side. I'm perfect.

And our two first high quality embryos didn't implant.

And our second round produced our wonderful twins.

Lack of implantation this time doesn't necessarily mean you won't be able to in future.

Take some time and talk it through with your DH. We took six months to allow my body to have a wee rest before the second round. We took some holidays and spent time talking about other non baby things so we returned for our second cycle rested, refreshed and ready to have another go.

It actually wasn't as hard second time round because I knew what was happening and felt more in control.

<big un Mumsnetty hugs to you both>

PegPeg Wed 02-Mar-16 13:17:14

Thank you so much Anna. Well done for getting through it and congratulations on the twins smile

At the moment I'm having all kinds of anxieties (inevitably I suppose) about what might be fundamentally wrong with me, or what I might have done 'wrong', that caused my embryos not to implant, and wondering how to find out so I can fix it for next time... what further tests can I have done, etc.

For example, I know a couple of people who have been unsuccessful after several attempts, and after further investigations they found out they had a problem with the excess production of uterine 'killer cells'. They were treated, and next time they tried they got pregnant. I can't help wondering if maybe I have these cells too...

In fact, I had planned to get tested for killer cells before my first cycle, as I wanted to be absolutely sure I'd covered all the bases seeing as we only had this one precious chance with my own eggs. But it turned out I couldn't get tested because the test needs to be carried out while you've ovulating, and I don't ovulate as I've had my ovaries removed. And apparently the treatment would be a bit risky for me in any case given my medical history. So if I do have a problem with these cells I will never know about it, and will go through more rounds not knowing I have zero chance.

I suppose these are all natural thoughts to be having and that many people on this forum will have experienced the same thoughts... and I'm surely over-worrying about all this and probably just need to let it go. I know it just might work out next time...

I guess part of what I'm feeling is about going through this process of trying to come to terms with the worst case scenario, so that the idea of failing again next time doesn't seem so unbearable.

x

victoria1981 Wed 02-Mar-16 13:50:32

Oh, Peg. I'm so sorry. I wish I had more to say; just that I wish all the best for you and your lovely OH, whatever you decide. You have my thoughts and good wishes.

I'm in the 2ww of my first and probably last ICSI cycle, so I know how you feel about not going through it again. If I do, it certainly won't be soon.

All love xxx

SesameSparkle Wed 02-Mar-16 13:50:46

My situation is different. I have no male partner and very low ovarian reserve. I desperately want my own biological child and have had a number of own egg IVFs without success, including a mc last year. I’m currently trying natural cycle IVF, but my chances are now extremely low - despite all my efforts, I might still have to walk away, else readjust my dream and embrace donor eggs myself.

Will you have a follow up appointment at your clinic where you might be able to talk through the reasons why your embryos didn’t implant? That might help. I think I’ve read on the Robert Winston blog that donor egg IVF actually has higher success in post-menopausal women, as it’s better for preparing the lining for transfer – so it’s possible with no ovaries that you may even have some advantages for this type of treatment.

PegPeg Wed 02-Mar-16 14:38:51

Thanks you Victoria for the kind thoughts. I wish you all the very best for your cycle. The two-week wait is hard isn't it. Very best wishes to you x

PegPeg Wed 02-Mar-16 15:24:09

Sesame, I don't know if this will help or not, but in my case I suddenly became OK with the idea of using donor eggs when I had this big realisation that should my ideal first choice (own eggs) no longer become an option, my second choice (donor eggs) would move up into first position, and that would become the new ideal.

Indeed, now that my first option has disappeared, it IS the new ideal... (it seems I am already beginning to move on a bit...) and I know that despite the disappointment of having expended our one and only chance for a biologically-shared child, we'd be delighted now to get pregnant using donor eggs, if fortune shines on us.

I think that after experiencing a horrible failure in life, you become extra appreciative when you experience future successes - even if you've had to readjust your expectations somewhat along the way.

And it's this realisation that is slowly helping me come to terms with the possibility of donor eggs not working either... at that point, adoption would become the new ideal. I'd love to have the experience of carrying and giving birth to a child, and while of course it would be a loss to wave goodbye to that option, my ultimate goal is to start a family... and really, that does not depend so much on biology. Families can be formed in many ways smile

I'm still struggling with the thought of going through it all again though, with all the anxiety and discomfort and pain the process entails. I'm like, "ughhh, loads more pain to come? Really?" I've been through enough physical pain to last a lifetime, what with having had cancer and the long road to recovering from having nine of my organs removed, for starters :/

But, I think I'm getting there. "It's only pain", as my dad likes to say wryly. I need to acknowledge to myself that I'm absolutely shattered right now, and in the grief stage, and still in physical pain right now, but I will feel better. I'll rebuild my strength, as I have done many times in my life already... the proof of my capability to do so is right there. All I need is time... and a proper night's sleep.

Balloondog Wed 02-Mar-16 15:52:55

I'm so sorry for all you've had to cope with and what you're going through now Peg. I have not been in exactly the same situation as you but I can tell you, that just as you have, I did hit rock bottom, and I came out the other side. It does get better I promise. The down side is it took years but I can honestly say that 5 years since my first IVF I have never been happier with my life.

In our case, it was MFI. We did 4 rounds of ICSI, each time we had perfect 5 day blastocysts and never put back fewer than 2. I didn't get pregnant once. None of our Drs could explain it. As the advice was just to keep trying (rather than exploring any possible reasons why) we eventually decided to stop as I just couldn't take it anymore. We had always wanted to adopt regardless so we just concentrated on that. Unfortunately as we are a mixed nationality/religion couple and live abroad in a non-Hague country adoption has proved impossible. We had three adoptions fall through for various ridiculous paperwork reasons and this summer we made the decision to let it go, as we were out of viable options and we just couldn't fight any longer. I have to say after the first few weeks of real wobble (I had never in my life imagined I wouldn't be a Mum), I've come round to the idea a lot faster than I expected.

I'm surrounded by people with children and while this used to be the hardest thing imaginable, I'm now grateful I don't have to deal with a tantruming toddler or stroppy teenager. I've embraced my 3 - soon to be four - godchildren (and where once I felt this was a consolation prize, I now genuinely think I get the best deal - I get to be the fun Aunt and not have any of the day to day grind). It's been a long journey getting here and I know you're not going to be ready to hear this now (I HATED when people said the same thing to me a couple of years ago) but whatever happens you WILL be OK. I hope and pray you will get your family one way or another but please do know that whatever happens you can have a happy and contented life with or without children.

SesameSparkle Wed 02-Mar-16 20:05:15

Peg, yes I do understand that and I try to take strength from others who have made positive decisions to move on to donor egg. My ultimate goal is also to have my own family and if I have to find other ways to do this, then I recognise that’s what I have to do. But the transition points in this journey are still very tough. Your experience has given you great insight. I hope you sleep better tonight.

Balloon thank you for posting your story here. There are so many stories around about ivf success, it’s also good to hear that the gritty reality is not always such a positive one. I’m sorry that you never got the family you tried so hard to attain. But it’s encouraging for me to hear about folk that can move on from such a devastating loss and still manage build a happy and rewarding life.

Blondeshavemorefun Thu 03-Mar-16 23:22:59

Peg I am sorry your frozen embryos didn't take

I have had 4 private failed ivf - 3 cycles and 1 fet from the 3rd cycle

I can't answer your question of how to carry on. I'm at breaking point mentally emotionally and financially £21k spent and nothing

And the last 2 were in a different clinic as lost faith after 1&2 - and Perfect conditions as lining fab and egg 5 AAA quality - the best she had seen said the embryologist .,,,,,.

Yet still failed sad

I wish you luck with donor eggs x

Yrias Sat 05-Mar-16 18:15:33

Peg, that was a lovely, hopeful post. Thank you for that, at a dark time for you. Made me feel a little better too. smile

PegPeg Sat 05-Mar-16 22:33:36

Thank you all for taking the time to share your thoughts and your best wishes, much appreciated. Balloondog I'm glad you have found peace with your situation and it's great to hear you're so happy.

Due to the length of the donor egg waiting list, I think it's going to be quite a while before we have the opportunity to try again, and in the meantime I know I can't make my whole life just about waiting to have a baby, so I'm trying to find other things to focus on. I say trying... it's not easy! Not that I need to tell you lot that ... xx

Blondeshavemorefun Sat 05-Mar-16 23:49:22

Have you looked abroad for donor eggs?

Treatment is Cheaper then uk and also the children at 18 can't search for their donor

I'm a maternity nanny and several of my clients went abroad and successful babies (obv as I looked after them)

SesameSparkle Mon 07-Mar-16 12:45:11

Hi Peg, focusing on other things for now sounds like a good plan. I wanted to add that if you would like to push on with treatment and want to do this in the UK, then you could probably find somewhere with a short or even no waiting list for egg donor, if you are prepared to travel to another region. There are pros and cons for staying in UK vs travelling abroad and you might want to investigate all the options. Some places in UK even offer good options for remote patients, e.g. you could arrange for scans etc. local to you, then travel to the fc only when you need to (that's also how it works when you go abroad). If you need help with signposting then National Gamete Donation Trust has full listings for clinics and Donor Conception Network also has good resources. Hope you have had a chance to relax and have been looking after yourself?

PegPeg Mon 07-Mar-16 18:40:36

We have thought about going abroad for treatment, but there are a few issues with that for us, so I'm not sure it's a very viable option at the moment.

We are instead considering travelling to another region of the UK to speed up the process... There's just something about the idea of a long wait that is making me feel really horrible. It's like I want to get back on the horse, but that damn horse has run miles away.

I think this feeling is partly to do with my age (I'm no spring chicken anymore, and that heavy march of time is deafening), but mostly to do with not really knowing what the hell to do with my life... I've totally been in 'baby mode' these last few months, and now we've had this big disappointment it's like I've come crashing back down to earth, and looking at what's left, and even though intellectually I know I still have a lot to be thankful for, I'm feeling no enthusiasm for anything at all.

That huge gap in my existence which only starting a family could fill is echoing all the more loudly... it's like this deep, morbid bell is tolling somewhere in the back of my head... and all my hobbies, which have always been not just a delightful distraction but an integral part of who I am, now just seem like desperate time fillers sad I can't get excited about anything at the moment.

It will probably pass soon... it's only been a week since our bad news, after all. But y'know, screw this, it totally sucks.

I had NO IDEA how difficult IVF would be :/

miamiaMo Wed 09-Mar-16 12:47:22

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

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