IVF/ICSI - how bad is it and any long term effects?

[Daisyroselondon]

Hi all. I'm due to start IVF/ICIS in Jan and am really having a bit of a panic. Our chances are pretty slim - 10 to 15%. I'm trying to research any long term effects on mother and babies, finding that all it keeps coming back to is that not enough research has been done. My mother died ten years ago of cancer, so I probably have the irrational fears of injecting growth hormones. I would love to hear of any side effects / long term effects you had or didn't have. Anything really. I don't know if I'm just being a bit of unreasonble scaredy cat or if there is something to be wary of!! Thank you so much

2 IVF, 2 ICSI.

We're lucky that the clinic was brilliant and managed to pay for it on our own - how I have no idea.

We got our NHS appointment through finally but I was already 10 weeks pregnant.

I enjoyed the routine and rituals of self injecting (when I need bloods done the nurse says "sure you could do this yourself you've stuck so many needles in you!" - in the way it made me feel in more control after several miscarriages. But as a PP said much harder mentally than physically. Where I live you must be offered counselling which I found invaluable.

My plan for my 40th was to go to New York for the trip of a lifetime. 25 weeks pregnant so no go! DD 7 now and currently huffing with me for some un known reason!

Honestly - go for it, you'll be fine. Good luck

My ICSI twins are 14 years old.
First round - got lucky. Worst part about it was being lied to and ripped off by a London clinic who pushed me to having treatments that had almost zilch success for my age group. I actually reported them to HFEA who were useless. I cannot stress strongly enough DO YOUR RESEARCH.

Once I found a clinic (recommended by other women on IVF boards) I would say that physically the daily progesterone injections were tough. My arse was like a bag of frozen peas with all the lumps and bruises. I also got a bit 'tired and emotional' during the hormone shots too.

Once pregnant everything was textbook aside from them arriving early. I did what I had to do to achieve my family. I never felt sad or ashamed and have been very upfront about having IVF - even when strangers ask 'do twins run in your family?'. I reply 'No I had IVF'

I don't appear to have any related health issues now. Children are healthy.

Good luck OP.

I had IVF 12 years ago for secondary infertility (we had a 5 year old but struggled to conceive after that). Tbh I took the actual IVF process in stride. My main emotional trauma was the fact that DS1 had no sibling and I desperately wanted to give him one. I was completely obsessed with age gaps which I know will sound bonkers to someone trying for a first baby.

We were incredibly lucky that it worked, and I had an easy pregnancy with no health issues. DS2 is now 11 and fabulous and has no health issues either. Nor have there been any longer term issues with physical or mental health for me. I was very lucky.

As far as the process goes I did hyper stimulate and was quite poorly (not a hospital admission though) and had to have a blastocyst transfer at day 5 as I wasn’t well enough for a day 3 one. But tbh I didn’t find any of the injections, procedures, scans etc particularly traumatic. BUT I don’t know if that was mainly because I’d already gone through a full term pregnancy, an emergency c section delivery, two subsequent operations under GA for horrific post partum abscesses plus two early pregnancy losses - and frankly the IVF was no worse than any of that. I suspect that I was a bit more philosophical about it than many are able to be because of my medical history generally.

That said, it is a very gruelling process and I think going through it for primary infertility must be a lot tougher, and some of the stories you hear are heart breaking. However, there are also some positive stories out there too.

Sending you all good wishes OP

Just to add that like the poster above me I have never felt any shame or guilt about needing ivf and am very open about it if people ask. The main emotion I experience when I think back on it all is huge, immense gratitude.

I have an 18yr old grandson thanks to ICSI. He's strong, healthy, bright and beautiful.

Thank you!
Try and do anything you can that will make the process easier. First time around I worked the whole time, and only told my line manager a couple of weeks before it all started (we had previously tried IUI which didn’t work, so I was already going to a ton of appointments). That wasn’t the best idea, and I should have taken time off, particularly the day of the transfer. For both it was day 5. This time around I was completely wiped the day of and the day after. Apparently 48 hours after transfer is when it’s most likely to implant, so listen to what your body needs (mine needed a 3 hour nap) and give it that. Even if it’s a tub of Haagen Dazs and a Netflix marathon

My ICSI baby was 21 yesterday. She is in third year at uni and an absolute delight.

I found the egg harvest very painful, but I believe there is anaesthetic given now (no idea why I didn't get any).

I also found the first few weeks of pregnancy utterly exhausting which I believe was a side effect of the drugs.

Good luck OP. Perhaps you could start to get support for your anxiety now so it doesn't get out of control.

I have done IVF/ICSI. It worked first time. No bad effects or illness. Everything seems fine 3 years later

@Varjakpaw

My ICSI baby was 21 yesterday. She is in third year at uni and an absolute delight.

I found the egg harvest very painful, but I believe there is anaesthetic given now (no idea why I didn't get any).

I also found the first few weeks of pregnancy utterly exhausting which I believe was a side effect of the drugs.

Good luck OP. Perhaps you could start to get support for your anxiety now so it doesn't get out of control.

Ah, how lovely! Happy birthday to her.

I'm sure. After all the ttc - it must be wearing to embark on pregnancy start after

Thank you, I already do - believe it or not! :)

@Absy

Thank you! Try and do anything you can that will make the process easier. First time around I worked the whole time, and only told my line manager a couple of weeks before it all started (we had previously tried IUI which didn’t work, so I was already going to a ton of appointments). That wasn’t the best idea, and I should have taken time off, particularly the day of the transfer. For both it was day 5. This time around I was completely wiped the day of and the day after. Apparently 48 hours after transfer is when it’s most likely to implant, so listen to what your body needs (mine needed a 3 hour nap) and give it that. Even if it’s a tub of Haagen Dazs and a Netflix marathon

Thank you! That's great advice. Although I am beating myself up about not having the 'perfect' diet in preparation for all this...

@Footle

I have an 18yr old grandson thanks to ICSI. He's strong, healthy, bright and beautiful.

Beautiful!

@FlyingPandas

Just to add that like the poster above me I have never felt any shame or guilt about needing ivf and am very open about it if people ask. The main emotion I experience when I think back on it all is huge, immense gratitude.

Wow, that sounds unbelievably gruelling.

Yes, I think the unknown of the whole experience bundled in with IVF - feels like a lot. But this is all helping :)

@Catflapkitkat

My ICSI twins are 14 years old. First round - got lucky. Worst part about it was being lied to and ripped off by a London clinic who pushed me to having treatments that had almost zilch success for my age group. I actually reported them to HFEA who were useless. I cannot stress strongly enough DO YOUR RESEARCH.

Once I found a clinic (recommended by other women on IVF boards) I would say that physically the daily progesterone injections were tough. My arse was like a bag of frozen peas with all the lumps and bruises. I also got a bit 'tired and emotional' during the hormone shots too.

Once pregnant everything was textbook aside from them arriving early. I did what I had to do to achieve my family. I never felt sad or ashamed and have been very upfront about having IVF - even when strangers ask 'do twins run in your family?'. I reply 'No I had IVF'

I don't appear to have any related health issues now. Children are healthy.

Good luck OP.

Bloody hell, seriously?! I do feel out of control with really having no real medical knowledge! Plus, having gone through my mother's illness with her, it really felt like the doctors were clueless tbh.

Happy to hear you're all healthy and well.

Thank you :)

@serialreturner

2 IVF, 2 ICSI.

We're lucky that the clinic was brilliant and managed to pay for it on our own - how I have no idea.

We got our NHS appointment through finally but I was already 10 weeks pregnant.

I enjoyed the routine and rituals of self injecting (when I need bloods done the nurse says "sure you could do this yourself you've stuck so many needles in you!" - in the way it made me feel in more control after several miscarriages. But as a PP said much harder mentally than physically. Where I live you must be offered counselling which I found invaluable.

My plan for my 40th was to go to New York for the trip of a lifetime. 25 weeks pregnant so no go! DD 7 now and currently huffing with me for some un known reason!

Honestly - go for it, you'll be fine. Good luck

Wow, that incredible! I do feel a little more in control after the 4 years of limbo... so I'm excited to try something else. It's the 'will this happen for me' that is slowly driving me mad.

Hope she's stopped huffing ;)

Thank you x

I have 1 dc. Not sure if ivf or icsi as we had one of each type implanted in that cycle (way to mess up the HFEA stats !

We had 2 IUI cycles (1 failure, 1 cancelled partway due to ovarian cyst), 2 collection cycles, 1 fresh and 2 frozen transfers. Our last go (FET with our final two embryos) worked (the only time I have ever managed to get pregnant).

I strongly recommend taking up the counselling the clinics have to offer. I did this after the first two transfers failed and it really helped me process how I was feeling about everything and work out that I was ready to say no more collection cycles.

We always wanted more than 1 DC but I’m not prepared to undergo any more and can’t face ‘just seeing what happens’ . Making my peace with having an only.

All the best with it all.

One failed round of icsi here, followed by a natural pregnancy before I could bring myself to try round two.

I found the physical stuff totally fine as I was so focused on the end outcome. However it was tough mentally and I was so angry with myself when it failed.

@Fleetwoodmacs

One failed round of icsi here, followed by a natural pregnancy before I could bring myself to try round two.

I found the physical stuff totally fine as I was so focused on the end outcome. However it was tough mentally and I was so angry with myself when it failed.

wow, congrats on the natural pregnancy. I'm always so amazed by people who go on to have a natural pregnancy after ICSI as I kind of feel like we're in the - this is it or nothing - camp.

I am worried about that aspect. I'm pretty hard on myself at the best of times. And I feel like I should be living like a monk on pure silk sheets breathing perfect air right now which I am not doing. I'm finding, the cost of it all really ramps up the pressure

Three IVF failures under my belt with a top clinic. Got sepsis after one egg collection which wasn’t nice but thankfully a rare complication.

The physical side is nowhere near as tough as the mental side. Both my husband and I are extremely tough people mentally and physically, yet we both needed time off work & fairly extensive counselling after the third failure. Hoping to do another round in the new year.

@Daisyroselondon hey been reading with intent as think this is our only option too! Noticed the figures you gave on his sperm. Do you recall his count? Mine has 5mil count, 2.3% morphology and 14% motility so only marginally upwards on your Dh. He's not had his second SA yet to see if lifestyle changes has made a difference or not. Hopefully next month!

I have had 3 fresh cycles of IVF with ICSI and two frozen, I have had 3 pregnancies. I have one living son with congenital brain abnormalities (ventriculomegaly and absent cavum septum pellucidum), one miscarriage at around 8 weeks, and most recently a tfmr at 25+6 for multiple severe fetal abnormalities in multiple organs due to the conditions VACTER association and heterotaxy syndrome. There is an increase in the chances of major fetal abnormalities, especially endocrine system, genitourinary and gi tract abnormalities, increased chance of autism and intellectual disabilities and childhood cancer with ICSI but it is not known wether it is because of the ICSI itself or as a result of male sub fertility. My son with brain abnormalities has had normal development so far and is healthy, I am absolutely terrified of him getting brain cancer, it might be an irrational fear due to all the trauma we have been through as a family.

I had two rounds of ICSI to have DD. First round was long protocol and I found the down regulation tough. It made me quite depressed. The first cycle ended in a CP and it was hard going. I felt useless for a while.

Second cycle was short protocol and easier to handle. DD came from that cycle and she is healthy, bright, strong, meeting all her milestones etc.

I have recently discovered I am pregnant with twins naturally so it certainly hasn’t damaged my fertility in any way! But I am 40 and multiple pregnancies are more common as you get older.

I don’t know whether there will be any long term side effects from the hormones. It was a small risk I was willing to take in order to become a mother.

@Tigger85

I have had 3 fresh cycles of IVF with ICSI and two frozen, I have had 3 pregnancies. I have one living son with congenital brain abnormalities (ventriculomegaly and absent cavum septum pellucidum), one miscarriage at around 8 weeks, and most recently a tfmr at 25+6 for multiple severe fetal abnormalities in multiple organs due to the conditions VACTER association and heterotaxy syndrome. There is an increase in the chances of major fetal abnormalities, especially endocrine system, genitourinary and gi tract abnormalities, increased chance of autism and intellectual disabilities and childhood cancer with ICSI but it is not known wether it is because of the ICSI itself or as a result of male sub fertility. My son with brain abnormalities has had normal development so far and is healthy, I am absolutely terrified of him getting brain cancer, it might be an irrational fear due to all the trauma we have been through as a family.

Oh Tigger85. I am just heartbroken reading this. You've been through such a hard time. I'm so happy to hear that your son is developing well. Completely understandable that you would be terrified of what could happen next. My mum died of a brain tumor and I think when you've gone into the depths of hell, the thought of what is round the corner can sometimes be a little overwhelming.

Sending you and your family the very best of luck for the longest time possible x

And if you have time - do you know where I could find more research on ICSI abnormalites? I was trying to find some last night.

[quote notyetamumbuttrying]@Daisyroselondon hey been reading with intent as think this is our only option too! Noticed the figures you gave on his sperm. Do you recall his count? Mine has 5mil count, 2.3% morphology and 14% motility so only marginally upwards on your Dh. He's not had his second SA yet to see if lifestyle changes has made a difference or not. Hopefully next month![/quote]
hello! tbh, i've completely blanked it all out. I read it a few times off and on - and can never remember! Some part of me is clearly traumatised Good luck! Has he stopped drinking etc?

@jcurve

Three IVF failures under my belt with a top clinic. Got sepsis after one egg collection which wasn’t nice but thankfully a rare complication.

The physical side is nowhere near as tough as the mental side. Both my husband and I are extremely tough people mentally and physically, yet we both needed time off work & fairly extensive counselling after the third failure. Hoping to do another round in the new year.

Sending you the post of luck. I'll keep my fingers crossed for you

I'll stop doing the quote thing, I'm sure it's really annoying! This is my first thread - so I'm still learning :)