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

I had it over 4 years ago.
It went well, we transferred one embryo and worked the first time, we were lucky.
I had Ovarian Hyperstimulation syndrome a few days after getting pregnant. It was painful but luckily not a bad case and I didn't have to be admitted to hospital, I managed it at home and it went away in a few days.
Other than that everything went well, good pregnancy as well.

I had ICSI. DS is only 4 but no negative health effects seen yet.

However the first ivf baby is about 42 years old now. So the first IVF children's parents are probably in their 70'a. If there were massive health consequences I think we would know by now.

My friends icsi baby is 18 and has no ill effects and neither do I.

I had various rounds of IVF. No long term effects (not even a child).

@TeenPlusTwenties

I had various rounds of IVF. No long term effects (not even a child).

(hug to you)

I had ICSI and it was fine. No effects. I did feel quite grumpy when on the drugs at the beginning, but other than that it was fine.

The only thing is, is that five years on, I’m beginning to feel guilty about the embryos we had that were discarded. It’s a bit random and out of the blue, but I get quite upset about it every now and then. Also I had two embryos put in, and had one baby. I often think about the one who didn’t make it. I could probably do with some counselling to be honest!

I didn’t expect these feelings after 5 years but I expect my age (38) has something to do with it (time running out for another).

I found the egg collection difficult, intrusive and upsetting. I had hyperstimulated and produced too many eggs, so they had reduced the hormones but still collected about 25 before stopping. Don't know if that was why the collection was so bad, but we couldn't proceed with a fresh implant because of it. And only a couple of them successfully fertilised. I was gutted. One of those little frozen embryos is now 10 & perfect in every way. Strong, healthy, beautiful & doing well in school. No long term impact on me either.

I had a number of IVF cycles over 8 years - last cycle in 2012. Physically I found it fine but emotionally was a different story - not so much caused by medication but dealing with failed cycles, challenges to overcome during cycles, etc. All worth it in the end though.
No after effects since and all good with 7.5 year old daughter.
Good luck with your cycle.

Thank you so much everyone. It's really helping hearing all your stories. Was up all hours wondering about this and doing dr google searches

@Osirus

I had ICSI and it was fine. No effects. I did feel quite grumpy when on the drugs at the beginning, but other than that it was fine.

The only thing is, is that five years on, I’m beginning to feel guilty about the embryos we had that were discarded. It’s a bit random and out of the blue, but I get quite upset about it every now and then. Also I had two embryos put in, and had one baby. I often think about the one who didn’t make it. I could probably do with some counselling to be honest!

I didn’t expect these feelings after 5 years but I expect my age (38) has something to do with it (time running out for another).

That's so interesting. When I heard they were discarded in the clinic, I found that really upsetting - I mean it's obvious that's what would happen, but strangely upsetting! I hope you feel better about it soon.

@TeamLannister

I found the egg collection difficult, intrusive and upsetting. I had hyperstimulated and produced too many eggs, so they had reduced the hormones but still collected about 25 before stopping. Don't know if that was why the collection was so bad, but we couldn't proceed with a fresh implant because of it. And only a couple of them successfully fertilised. I was gutted. One of those little frozen embryos is now 10 & perfect in every way. Strong, healthy, beautiful & doing well in school. No long term impact on me either.

I found even the scans intrusive and uncomfortable so I have a feeling I'll be similar to you. Conrgats on your little one :)

Daisy Thanks for the hug. It was quite a few years ago now & we went on to adopt, which has been a roller coaster in itself.

One of the things re IVF & long term effects. IVF has been going for 'only' 42 years. I'm not sure how many studies there have been following women years after, so there may be impacts into our 70s+ that just aren't known about yet. That wouldn't be a good enough reason not to give it a whirl though.

I had icsi in 2017. I’m not going to lie, I found it pretty traumatic, mainly because I have ocd and feared anything medical! I ended up having an extra couple of days stims as I have low ovarian reserve and only one ovary decided to play ball. Ended up with 6 eggs out, 4 fertilised and I was convinced that 2 embryos in would if I was lucky result in one baby out.

I now have nearly 3 year old DTs

I’ve not experienced any side effects from it, then or now. My ovaries were swollen up like lemons and were uncomfortable, and the egg retrieval was painful when I woke up which made the inserting the oestrogen and progesterone vaginally really uncomfortable.

Emotionally it was rough, I felt ashamed of needing ivf, weak and pathetic as I couldn’t inject the stims myself and had to get DH to do it, and guilty that it worked as though I had no right to be so lucky. I couldn’t talk about it for my entire pregnancy and probably for the first few months of their lives, but now I’m over it and will quite merrily discuss it with anyone interested.

Like PP, I do feel a bit guilty that I’m unlikely to use the two embryos I have in the freezer.

TL;DR - emotionally rough, physically fine!

I did 5 rounds of IVF and 4 transfers in 18 months but I specifically did short protocol IVF and natural modified IVF as I didn't like the idea of all of the hormone drugs. No lasting effects but I did find that by the 5th cycle it was becoming harder and harder to generate follicles and it was clear my body had had enough!

I had 4 icsi treatments 15 years ago . It wasn't successful . It made a huge hole in our finances and plunged me into a depression for months.
I have lichen sclerosis now which kicked off after the first couple of treatments. I see the same gynae for that as did our icsi . Who knows if there's a connection .
We survived but it's tough .
Your odds are low , why is that ?
I was told about 20% and I was in my mid thirties.
Despite statically getting the expected result I could not accept that it didn't work , which resulted in my really struggling for a while .
Have you thought about how many attempts you would make ?

@TeenPlusTwenties

Daisy Thanks for the hug. It was quite a few years ago now & we went on to adopt, which has been a roller coaster in itself.

One of the things re IVF & long term effects. IVF has been going for 'only' 42 years. I'm not sure how many studies there have been following women years after, so there may be impacts into our 70s+ that just aren't known about yet. That wouldn't be a good enough reason not to give it a whirl though.

I agree - 42 years isn't long. And then I start to spiral into thinking about generations > generations > generations of ivf babies and the knock on effects. I know, I'm overthinking!! (and quite anxious)

@ivfbeenbusy

I did 5 rounds of IVF and 4 transfers in 18 months but I specifically did short protocol IVF and natural modified IVF as I didn't like the idea of all of the hormone drugs. No lasting effects but I did find that by the 5th cycle it was becoming harder and harder to generate follicles and it was clear my body had had enough!

Me neither, it sounds like they're planning on pumping me up. Guess it's an age thing - but the whole idea of hormone drugs freaks me out

@FilledSoda

I had 4 icsi treatments 15 years ago . It wasn't successful . It made a huge hole in our finances and plunged me into a depression for months. I have lichen sclerosis now which kicked off after the first couple of treatments. I see the same gynae for that as did our icsi . Who knows if there's a connection . We survived but it's tough . Your odds are low , why is that ? I was told about 20% and I was in my mid thirties. Despite statically getting the expected result I could not accept that it didn't work , which resulted in my really struggling for a while . Have you thought about how many attempts you would make ?

I'm not sure. Age probably? I'm 41 - 42 early next year coupled with partners v v v lazy sperm. I probably should have started now but my covid fears put me off until Jan (I'm an asthmatic) Tbh, currently I'm thinking just the once - it's so so expensive and the thought of multiplying that figure makes my eyes bleed. But who knows, maybe when I'm pumped up with hormones and flooded with despair, I'll be bringing out all the credit cards!

I've been in a pretty dark depression for various other reasons and am only just starting to feel happy again, so the thought of paying through the nose to potentially go back to that place scares me. Gosh, it's all coming out now!

I'm sorry to hear about your lichen sclerosis, that sounds painful

I had 3 rounds of ICSI, the 3rd was successful and DS is nearly 7.

No long term health effects BUT I found the treatment at the time hard going physically. Lots of pain and hormonal side effects.

And obviously its hard going mentally too, although it wasn't until I actually got pregnant that it hit me, and I had awful prenatal anxiety for the first few months.

This thread has really struck a chord with me.

So we were married fifteen years and in that time had multiple miscarriages and missed miscarriages.

In addition we had two failed rounds of IVF before we were discharged and told there was nothing further that could be done.

We went on to fall with Dd naturally and carry to full term and I'm due number two any time.

I found the IVF tough, but for me I think the mental after effects were profound.

That sense of loss and inadequacy when I began the process, compounded further when I then also failed at that. When Dd was born I suffered horrific post natal anxiety and really I still do.

Some of this will be linked to the MC process but the IVF part was toughest. We had to travel over two hours and it was very impersonal. The waiting room was shared with a scan clinic and tough to say the least. I never saw the same nurse or doctor. I felt isolated and lonely. The support I received on here being my crutch and invaluable.

I'm still having weekly counselling and DD is two. It's been a very long road. The long term effect was the deteriorating state of my mental health for sure. Nobody picked up on that.

I wish you all the best OP, and anyone else embarking on this. It's a wonderful thing and yes I would do it again but I wasn't prepared for the heartache.

My friend is an IVF baby, she is 32 and has had 3 children naturally no problems.

Straightforward IVF/ICSI should be fine for the children conceived as there is very little/nothing done to the embryo other than inserting it back into the uterus. Children could possibly inherit a slightly increased chance of infertility from their parents though.
However, that's the same for natural conception. My husband's parents struggled for 13 years to conceive him (their only) and he has male infertility.

I have had IVF and I was very lucky and found the whole process okay. The investigations and the monitoring, the injections etc. did not bother me nearly as much as the usual monthly anxiety and disappointment of failing to conceive. We were very very lucky, IVF worked for us.

@howitstarted

I had 3 rounds of ICSI, the 3rd was successful and DS is nearly 7.

No long term health effects BUT I found the treatment at the time hard going physically. Lots of pain and hormonal side effects.

And obviously its hard going mentally too, although it wasn't until I actually got pregnant that it hit me, and I had awful prenatal anxiety for the first few months.

You've just hit another of my fears (god, I sound like an axious wreck!) I worry that having gone through all that and be lucky enough to get pregnant - I'm going to spend the 9 months having prenatal anxiety. Thank you all for helping me articulate some of this

@EclipseHart

My friend is an IVF baby, she is 32 and has had 3 children naturally no problems.

Straightforward IVF/ICSI should be fine for the children conceived as there is very little/nothing done to the embryo other than inserting it back into the uterus. Children could possibly inherit a slightly increased chance of infertility from their parents though.
However, that's the same for natural conception. My husband's parents struggled for 13 years to conceive him (their only) and he has male infertility.

I have had IVF and I was very lucky and found the whole process okay. The investigations and the monitoring, the injections etc. did not bother me nearly as much as the usual monthly anxiety and disappointment of failing to conceive. We were very very lucky, IVF worked for us.

That's very warming to hear :) The doctor is encouraging PGS too, so I don't know if that has possible side effects...

Thank you so much and big congratulations

@icedaisy

This thread has really struck a chord with me.

So we were married fifteen years and in that time had multiple miscarriages and missed miscarriages.

In addition we had two failed rounds of IVF before we were discharged and told there was nothing further that could be done.

We went on to fall with Dd naturally and carry to full term and I'm due number two any time.

I found the IVF tough, but for me I think the mental after effects were profound.

That sense of loss and inadequacy when I began the process, compounded further when I then also failed at that. When Dd was born I suffered horrific post natal anxiety and really I still do.

Some of this will be linked to the MC process but the IVF part was toughest. We had to travel over two hours and it was very impersonal. The waiting room was shared with a scan clinic and tough to say the least. I never saw the same nurse or doctor. I felt isolated and lonely. The support I received on here being my crutch and invaluable.

I'm still having weekly counselling and DD is two. It's been a very long road. The long term effect was the deteriorating state of my mental health for sure. Nobody picked up on that.

I wish you all the best OP, and anyone else embarking on this. It's a wonderful thing and yes I would do it again but I wasn't prepared for the heartache.

Oh this made me a bit teary icedaisy - and congrats on number 2, amazing!

I have miscarried four ICSI embryos.

For very rare and obviously unforeseen reasons, one miscarriage put me in intensive care.

The treatment, injections, emergency surgery, thousands of pounds... NONE of it mattered compared to the pain I felt at the prospect of never being a mum.

I eventually had my utter miracle baby naturally at 39 but if I hadn’t, I would’ve had to carry on until I died or ran out of credit card space - and I don’t mean that flippantly even if it sounds it.