To feel like I regret IVF....

[Wobblyheart]

Hi everyone,

I am posting here for traffic because I am feeling so hopeless and sad. I haven’t got family or close friends near and i would appreciate any words of encouragement.

I am 36 years old and we wanted a baby for a very long time - been married since I was 27 and actively trying since I was 30. It was just not working. I would never ever had a pregnancy, be it chemical or miscarriage. We tried ivf and the two first attempts were unsuccessfull with BFN. The process was so drawn out because of the pandemic and it made things very difficult. I have the most amazing husband in the world and he wanted a baby so much I always felt like I was broken (both our labs were fine but my body just wasn’t getting pregnant). I was so surprised and happy when for the first time in my life I saw double lines after our third ivf attempt. I had a different protocol then with more progesterone.

what followed next was an extremely anxious pregnancy, slight issues with baby’s kidney was found on 20 week scan, then stalled growth, then reduced movements, then dramatic birth where there were some concerns about oxygen but the doctor reassured us they were not concerned after doing checks. Strange things started to happen to my health too but I blamed it all on pregnancy.

my beautiful boy was born, and the moment they put him on me for feeding changed my world forever. It was the most magical and happy day of my life. First couple weeks were a bliss. After that postnatal anxiety took hold and my physical health deteriorated considerably in the next following months.

fastforward to now, I have serious concerns about my baby’s development. He was late to hold his head - only started doing it around 4-5 months, and now at 6 months his social skills seem to deteriorate. He gives very limited eye contact, turns away from me and other people, does not always respond with a smile, it’s hard to get his attention. He seems to get frustrated with everything very easily. Terrible sleeper, does not get upset if I leave him and walk out from the room. Makes lots of sounds / screams bu not at me but just sort of in his own world. Constantly needs to move, slaps and flaps his hands, feet, squeezes and scratches everything all the time, even when feeding. I read similar posts on here and was disheartened how many times children with these traits went on to be diagnosed with ASD.

meanwhile, I am currently awaiting testing for a potential MND/ neurological disease and really worry that our life can change very dramatically. My husband does not deserve it. My heart is breaking for my son, I am worried about a difficult and terminal illness. And my mind can’t stop but race and think .... did we do a right thing doing ivf. Did we go against the nature and I was never meant to have a child? Did I bring more suffering to this world? My beautiful boy is just so innocent and he is the most bonny baby, and I feel like I might have potentially ruined his and my husbands lives.

i know nothing has been confirmed yet but I am on the verge and really struggling, both physically and mentally.

if anyone has been through something similar, I would appreciate if they reached out. Any positive stories would be very welcomed so I can retain at least some hope and not just sink deeper into the dark abyss.

Yes, I also think you do. It is hard, op, but, honestly, it does pass and it's wonderful when that happens. Please do look after yourself, make sure you eat healthily and try to get some time and space to do something you like. Are you planning to return to work? I know that working part-time was a lifesaver for me so please do look into that.

Congratulations on your much longed for baby who sounds absolutely fine and normal for his age.

All of your negative thoughts are born from fear which is totally understandable given what you have been through. Please get yourself some support be it meds counselling therapy whatever you need. You’ve been through a very traumatic experience and you are worried for the future. You need support and time to work through your experiences. Just go one day at a time, one hour at a time.

Oh op massive hugs to you. I also had IVF and went through very similar with you. My dd was the SAME, she didn't smile till about 6 months and everyone went on about how that was a big milestone. She wouldn't respond, often dreaming and doing repetitive motions with her arms, etc. Dh and I went into a spiral of Google convinced she has ASD or some SN. We even joined Fb support groups and just went off on such a tangent. We took her to a paediatrician to discuss our concerns and well you wouldn't believe it, right there she responded to her name when he spoke to her and smiled at him. Did a Few other things of the checklist too. And since then she has done everything as per expected. Your Lo is still discovering his world, so bear in mind he might take a bit longer or even get it all at once. If you feel that nothing is happening maybe speak to a paediatrician as a first start and see what happens. I do know that my dd suffered from horrid reflux, very severe and CMPA so that contributed to her being just a crying and miserable baby a lot. As she progressed onto solids and grew out of the reflux she has settled into a much happier child. A lot of what you describe was like my baby and I didn't realise that reflux could affect them so badly. I also questioned and blamed myself a lot for the IVF but now I can see that it wasn't me. Please don't be so hard on yourself and there's lots of support on here.

Didn't realise this was an older thread. Hope you and your LO are doing much better op!

How are you doing op? How’s your DS?

@AgeGapBbe I don't quite know how to start this update as so much is still unclear and so much uncertainty, but overall we are in a better place.

As to me, the tumour in my gluteus muscle got removed and is benign thank god, definitely not MND. Were a few minor vitamin deficiencies but not feeling better. Now investigating a gynea issue (urgent referral yikes) and was referred by GP to rheumatology. At this point GP is also questioning CFS. Basically, my muscle fatigue and heaviness didnt improve a bit. I am still worried about a cancer that is potentially being missed but overall I put on weight (even though through eating over 3,000 calories of food mostly in junk and sweets), look better, just not feeling better yet.

For my little dude, he is doing good. He is 15 months and 3 weeks now and I still have major concerns as we have no words (he signs "more" for food and open /close fist sign for milk). He says dada but not to mean anything. Babbling but very little if any back and forth. Points to request, rarely to share, gives toys to share or for help. Plays peekaboo, waves (rarely), claps, has gesture for washing hands, sometimes gestures to a couple of nursery rhymes he has, copies tongue out but does not copy any sounds at all. We have a referral from HV to hearing check but I dont know when that's going to be, it has been a month and no letter or anything. He has a looooot of sensory seeking behaviours that are above whats typical - needs to tumble, plays with his tounge, sqeezes and pinches me hard when falling asleep, no hand flapping but lots of repetitive play and carrying objects around, lots of roaming. Very frequent but short lived tantrums, lots and lots of frustration. Loves and does really well at nursery. So it is still wait and see.

Oh how I despise wait and see. I am ready to enjoy life but just can't catch a break yet. Maybe soon. Maybe it will all be okay.

Hi op! So much of what you're describing is a completely normal 15 month old. Repetitive and sensory play is key for their development and if you can show me a 15 month old who can share I'll eat my hat.

Do you go to any toddler groups? I think you'd be pleasantly surprised, have you asked nursery if they have concerns?

@Sugargliderwombat hi 👋 thanks for your reply. Sometimes I feel his repetitive play is on another level, he can take something of the shelf, put it back one, take if off, on and repeat 10-15 times. Same with rooms he likes to go in the untility,then out, then back again etc. But maybe he is just playing and exploring. By sharing I meant he rarely points to share interest - like a bird or a plane. Although he does point at lights. A lot. And dogs. So it's there, just very selective and not frequent.

And yes, we go to gymboree regularly. Its the only.toddler group he can fit in as he is not too good with circle time and sitting still so he likes to explore there. He goes to nursery, they don't have any concerns at present, he just moved on to a older group. I know what he is marked as "working towards" on loads of milestones and he was scoring black in communication, gross motor and grey in social personal when HV administered the 14 months ASQ but I think he has caught up mostly there. Still doesnt play ball back and forth though, and has no interest in teddies, let alone hugging them but he does show affection to me and he has a spunky personality which makes us laugh a lot.

Hi @ExhaustedMuch , was just thinkng about you and wondering how you were. I am much the same, and just been referred to a rheumatologist. Autoimmune, neurology, vitamins, thyroid, hormones all normal. Yet, I am still struglling. sigh.

Oh.... I am sure you are all bored of me and don't even know why I am making this post. A year ago I was in agony and so many of you helped me through that time, for which I will be eternally grateful. I was really in a very dark place.

I am glad not to be in it anymore but strangely now a year since I am still finding myself in a very similar frame of mind. I thought everything would have been fine by now or resolved one way or another. I guess life doesnt work that way.

Still having some concerns about my boy, although I love him so much and he is so precious, I know we will be okay no matter what.

Health, on the other hand, is a b. Just found out after US that i have adenomyosis. This is definitely knew and never had this before. Worried it could be something more but have to wait for gynea referral to come though. Seems like my body is enjoying making tumours, I hope they will stay benign.

I am absolutely fed up with the fatigue and no answers.

Sorry, it is a bit of a need of a cry and vent. I am doing better though than last year for sure, and not giving up so easily. But it still sucks.

Thank you all you lovely people. Be healthy & happy.

Hey @Wobblyheart how have you both been?

Infertility is one of the most traumatising things that can happen to a woman. A survey of women who’d had cancer and also separately infertility found that they found the cancer easier to cope with than the infertility.

Recognise that you are traumatised by the hideous process that is IVF, and that you are also drained, slightly depressed/disappointed, and exhausted, (like all new mums), and be extra kind to yourself.

There is no such thing as “meant to be” therefore no such thing as “not meant to have a child”. You were unlucky and had a physical problem that IVF helped you fix, just like cancer victims, heart disease victims, etc had physical problems they needed help with.

Perhaps your child will grow up to be autistic. Perhaps not. It is far too early to know. Perfect your child will become a genius or a billionaire or a drug dealer or a political leader with terrible ideas. You don’t know: it is far too early.

If your child does turn out to have special needs, you can still have a wonderful life together.

The only thing we can be certain of is that this worrying and stress you are going through is a pointless poison that distracts you from these precious moments with your child.

@Wobblyheart was thinking of you the other morning. I hope things are going ok for you and your family xxx

Thank you, its so kind of you! Can't say I can provide much of an update. I am still unwell and awaiting further investigations. I was diagnosed with hypermobility but I don't think it's a culprit of my malaise in the last 1,5years.

My son is 19 months now and he is doing really well. I still have some lingering concerns but he is an absolute star and (as our nursery say) a "big personality".

I will update later in the month as should have some info then, we will see.

I’m so sorry to hear you’re still feeling unwell, I can’t even begin to imagine how stressful that must be whilst also looking after a toddler!

So glad to hear your little one is doing well!

Sending lots of love and healing vibes xx

@Brainversusworld thank you :) So, I have seen a very good PT (gosh she was just amazing) through a hypermobility diagnosis. And it was the first time someone understood how i was feeling. So (I know it sounds so obvious) apparently, sleep deprivation will make you feel heavy and like full of lead.

Have just had another panel of bloods done and some other tests, all came back normal.

Next steps - trying out a gentle regime for myself and trying to get more sleep and rest, 2x 20 mins light walking per week and see how I feel in a month or so.

If nothing changes, I found a "Dr House" in London to go and seek opinion on what else it might be. And going to get GP to refer me to check my thyroid nodule which hasnt been checked in 4 years.

Thank you, yes, my little boy is doing great. I still have anxiety about his development but I also know that he is wonderful as he is so I am focussing on his strengths and learning to be the best parent i can be.