To IVF or not IVF
June 19, 2014 1:44 PM   Subscribe

I'm conflicted about using IVF to conceive, but at this point it's my only option. I have severe endometriosis and the eggs reserve of someone close to 40 (I've just turned 35). I've been trying to conceive for 19 months and have done everything except IVF. How do I decide what to do?

I hate the idea of the whole process of IVF, but more importantly, I'm worried about the health of the babies born via this method. Of course, I realize that this line of thinking is a "worst case scenario." I'm also worried about my "old-before-their-time" eggs causing genetic problems. Really, I'm just scared and don't want to have to do this at all.
Any advice on how to make the decision of whether to do IVF or live child free? Any special method you've used when making difficult decisions? Thanks for your help!
posted by purple24 to Human Relations (17 answers total) 10 users marked this as a favorite
My experience with IVF was pretty painless. It just didn't end up being that big a deal. But then, I was lucky. I had a fairly complication free experience. The time before I started IVF when I was trying to conceive with medications and other procedures, and waiting every month to see if they had worked, was far worse, and it went on for so much longer.... It was awful. If I had it to do over again, I would have explored IVF much sooner.

A lot of people worry about going too far - getting caught up in the process, spending so much money, and then not seeing the right time to stop. But you're the one who's in charge. If you get to a point where you feel that it is too stressful, then you can make the decision to step back at any time.

If you live in the US and are willing to travel to Canada or elsewhere, you can save a lot of money that way.

To my knowledge there is no increased risk of health problems specifically in babies conceived via IVF except for those risks associated with twin pregnancies and older mothers. If you are not comfortable with the idea of carrying twins, don't allow them to transfer more than one fertilized egg. Your chance of success with that cycle will drop, but if you have another fertilized egg in the freezer, you can come back next time and try again.
posted by bq at 1:56 PM on June 19, 2014 [3 favorites]

If you can do IVF, you can likely also be a candidate for PGD - it won't guarantee you have a healthy baby, but it can help screen out the unhealthy ones. Just as anecdata, all the children I know born via IVF (and in NYC that's a fair share) are healthy -- the most common ailment is prematurity due to the likelihood of multiples.

IVF is no fun and definitely not for everyone. It also doesn't always work. But as a stalling mechanism, you could also start the process now and harvest and freeze your eggs now, then try to conceive later (or freeze embryos).
posted by Mchelly at 1:58 PM on June 19, 2014 [1 favorite]

My wife and I didn't do IVF. We were able to conceive through IUI. But IVF was on the table.

First, we spoke with two reproductive endocrinologists and went through genetic testing. I assume that if you've done 'everything except IVF' and have been told about your egg reserve then you've already done that. If not, you should prior to making your decision.

There are some interesting things being done now with pre-implantation genetic diagnosis (PGD or PIGD) prior to embryo implantation in IVF procedures. The diagnostic tests can help you know if an embryo will (or might) develop certain genetic disorders, which gives you the freedom to decide whether to implant or not. If PGD shows your child will have Fragile X, you don't have to go ahead with the pregnancy. It's not a catch-all, but it can give you some peace of mind. There are some tests (for HLA-G) that allow doctors to guess whether implantation is more or less likely to succeed, as well.

Lots of in utero factors can influence health of your baby as well, even when you conceive without assistance. But the biggest issue with IVF is there is a greater likelihood of having multiples and possible prematurity when you implant more than one embryo. Preemies can have health problems. On preview: seconding mchelly here, you lower your chances of success when implanting only one embryo but it does give you some peace of mind.

Ultimately, you need to do what you're most comfortable with. If going down the IVF road, with the hormones and drugs you would need to take to get your cycle in sync, and to produce as many eggs as possible in a cycle, is not something you're happy with then you should seriously consider that.

Also, something to consider... when you do IVF, most clinics will follow you throughout the pregnancy or perhaps send you to a perninatologist for followup. The attention your pregnancy receives is often higher than it would be if you conceived naturally, which means that issues may be detected (and dealt with, where possible) early. My wife became anemic and developed a few other conditions throughout her pregnancy. We knew quickly because she was seeing a doctor weekly rather than monthly, and were able to address what was happening before it became too much of a problem. There's a greater level of control and monitoring which we found helpful.
posted by zarq at 2:07 PM on June 19, 2014 [2 favorites]

It might be helpful, if you feel comfortable doing so, to share why you have ruled out the options of adoption and surrogacy. This certainly isn't an either/or situation, but if it is for you personally, it may help posters to know why.

If you're specifically worried about the health of your eggs, you can "adopt" someone else's embryos. I'm assuming you're already working with a fertility clinic/specialist since you mentioned trying everything but IVF. They should have more information on this option. I know two women who have adopted embryos and now have healthy children. As others have mentioned, if you choose to use your own eggs, you can screen your frozen embryos for genetic problems. If the risk of multiples is a concern, you can choose to implant only one embryo. Alternatively, if multiple embryos successfully implant, you can choose to reduce post-implantation (an option that I realize may or may not be acceptable to you personally).

If the risks of IVF in general are worrying you, it might help to shift your thinking and focus on what you, personally, can control. Are you at a healthy weight? Are you in good physical shape? Do you have healthy eating habits? When pregnant, can you commit to making healthy lifestyle changes for your baby? You have an impact on the health and wellbeing of your child. Think of yourself as becoming a mother actively growing her baby, rather than merely a vessel with no active role or control.

I struggled with IF for about a year and a half and did eventually conceive, though I did not do IVF. It can be a frustrating, heartbreaking grind. I wish you peace in whatever decision you make and whatever your outcome is.
posted by pecanpies at 2:18 PM on June 19, 2014 [1 favorite]

It might help to break it down.

>I hate the whole idea of the process of IVF.

What in particular do you hate about it? The needles, the uncertainty, the lack of control? I find that these are all features of pregnancy and/or motherhood, and the experience of IVF pales in comparison to everything that comes after having a baby.

>I'm worried about the health of the babies born via this method

Why do you have this worry? Can you ask your doctor to tell you about the research that has been done into this subject? That might help give you something concrete that would help dispel this fear.

>Really, I'm just scared and don't want to have to do this at all.

Again, maybe some perspective would be helpful. Having to take care of a kid nonstop for a very, very long time is *much* more difficult than IVF.

>Any advice on how to make the decision of whether to do IVF or live child free?

Personally, I would default to being child free unless you really, really want to have a child. Having a kid is a Big Deal, and not to be entered into lightly. The experience of IVF really is so miniscule compared to the experience of having a child, so much so that I don't think it should be the deciding factor. There are much more important things that go into the decision to have a child.
posted by pizzazz at 2:19 PM on June 19, 2014 [8 favorites]

I think fear is a bad advisor.
It sounds like you haven't yet talked to a fertility specialist (doctor at a specialised clinic) about your options, pros & cons etc.

Do this as soon as possible. Trust me, I know what it's like to delay the information gathering process out of ambivalence. Did that for years. Don't. You don't have that kind of time. Remember they'll run a whole battery of tests on you and your first attempt may not be successful. It'll take you months as it is.

Go get all the information you need. Then you can still decide to drop it, but you'll do so for informed reasons.

FWIW I had a very non-emotional, fact-centered doctor who was good at explaining things and that helped me a lot.

I had two children via IVF. First time we mucked around with IUI and that was hell because we had two unsuccessful attempts and had to wait a month each time before seeing it was unsuccessful. With IVF we knew within a week or so (and it worked like magic each time).

I'm not sure what specifically you dislike about the process, so I can't address that. My friend decided against IVF because of moral reasons: she hated the idea of discarding already fertilized eggs (because you fertilize more than you need). I have no qualms about this. It is a really expensive process, that's for sure.

My experience was positive. And I'm kind of proud when I look at my two kids: I put hard work and much loving and hoping into giving life to them!
posted by Omnomnom at 2:32 PM on June 19, 2014 [1 favorite]

Oh yeah, feel free to memail me if you want to know more about my experience. I'm not in the US, though.
posted by Omnomnom at 2:36 PM on June 19, 2014

I have been dealing with infertility for years. I will never pursue IVF. It just isn't for me, for a wide variety of reasons. We are continuing to try on our own and looking into adoption. That's what is right for us. You have to do what is right for you.

I find it super offensive when people say that being a parent is harder than IVF, and imply that you must not want it enough if you don't go through with IVF. It's great that science has given people options. But that's what it is, an option. It's not a requirement that you try it. Conceiving via IVF is no more or less virtuous than deciding to live child-free.

It is okay for you to say "I will go this far, but no farther" - whether that means you'll do 3 cycles of IVF, but no more, or that IVF itself is too much for you. It doesn't mean that you don't REALLY want a child, or that you wouldn't be an amazing parent. It just means that you had to make a difficult decision to do what is best for you. You don't owe anyone else anything.
posted by cessair at 2:44 PM on June 19, 2014 [18 favorites]

One thing that hasn't been mentioned above is using an egg donor - it's different than embryo donation because you would still use your husband's sperm to create the embryo. This would relieve the concerns about the age of your eggs (although, have you asked your doctor about this issue? Because although your egg *reserve* is that of an older woman, the eggs themselves are still 35 years old, just like you… a reproductive endocrinologist could of course advise you best about the risks and benefits here). You can then decide to transfer a single embryo as advised above, to minimize the concern for multiples. Some factors can help you make that decision like whether you live in a state/place where insurance will cover several cycles of IVF, or whether you can purchase a package deal from your fertility office.

I did an injectables cycle to conceive my daughter, which involves a lot of the same things as IVF but not the egg retrieval/transfer part. There are a lot of hard decisions and they can be very controversial and fraught. It's hard to talk to other people about it, because most people who haven't been through infertility don't understand what it's like at all, and tend to say well-intentioned things like "why don't you just adopt" etc.

You could use some of the standard decision making strategies, like writing down a list of the pros and cons of each decision, and trying to see which of those pros and cons are highest priority to you. Or flipping a coin to make the decision and seeing whether you feel disappointed with the outcome if you sit with the idea of it for a while. Sometimes you just have to pretend you've made the decision one way or the other and then just see what your mindset is like as you go about your life having made that decision. If you're constantly doubting it and thinking about the negatives and having thoughts of regret, it's your prerogative to change your mind. Anyway I'm happy to talk with you via Memail about it at any time.
posted by treehorn+bunny at 3:00 PM on June 19, 2014 [3 favorites]

I may be totally wrong here, but from what you wrote, I'm guessing having your own biological child is important to you (which I totally understand and would feel the same way.) I might further extrapolate that having your own, natural, biological child is important to you, and maybe that is what you don't like about IVF? If that IS the case, maybe try to change your perspective. I don't see IVF as unnatural. You will have a normal, natural pregnancy, with your biological child, that just happened to have been assisted by science. All of the usual components are still there. I do like the idea of looking at IVF or fertility treatments as testament of how much you want and will love this child. And I don't think there is significant risk of health problems just because they were conceived through IFV. If you really want a child, I don't think vague fears are a good reason not to explore this option.
posted by catatethebird at 4:16 PM on June 19, 2014

This is just anecdotal, but:
For various reasons, one of my nieces is totally unable to become pregnant on her own. She and her husband went through multiple rounds of IVF more than a decade ago; they got one pregnancy, but it miscarried. They finally gave up on the IVF, but then early last year their medical plan said they'd pay for three more tries. Just a couple minutes ago my now-40-year-old niece posted more pictures of the chubby-cheeked results --- I assure you, 'old' eggs can turn out just fine!
posted by easily confused at 6:01 PM on June 19, 2014

I'm sorry this is long.

I'll address health effects first and IVF fear second.

There are some health differences and some phenotypic differences with the IVF kids, but with the former, the statistics are very muddy and case-dependent and with the latter, it's unclear what those phenotypic differences actually mean over a lifetime. The absolute oldest IVF child is only 36 so we just don't have good data.

Disclaimer: I am a biologist, but I am not a human biologist and this is armchair reproductive medicining.

A review from 2011:

A review from 2013:

If I read the literature correctly, the ratios for IVF kids on some health conditions are higher BUT

1) the oldest kids studied are not very old so we still do not and cannot know life long implications, (1 million kids born between 1978 and 2003, 1 million kids born between 2003 and 2005, 3 million kids born between 2005 and 2013)

2) the sample sizes, especially on the long studies, are small,

3) the confidence intervals in some places are very large,

4) conditional factors HEAVILY influence outcomes, but most studies don't separate out the conditionals

5) Individuals with subfertility also have higher than usual birth defect rates than individuals with spontaneous conception

6) Individuals with subfertility and IVF get monitored MUCH more closely than individuals doing the spontaneous conception route, plus, add in selection bias and the stats get muddy

7) there are some definite phenotypic differences in IVF kids that persist into adolescence, and could be bad things down the road in part because we don't know what some of them mean (such as the differences in methylation, which could persist into grandchildren and on, although with no citations and talking out my armchair, it is my opinion that some of what has been ascribed to methylation is overstated).

8) the older kids were made with the older stimulation techniques which have changed, so even if there IS a change in their health, it's not clear if the newer min-stim techniques will do that

9) frozen embryo transfers leads to bigger babies than fresh embryo transfers which means that newer min-stim techniques probably still have an effect

10) over all, the authors of the second paper were pretty rosy about IVF kid health right up until

11) they disclose that they've got some financial bias.

Also, as others have pointed out, a ton of the IVF health effects are because of multiples. Be sure, when you look at studies, that you're comparing singleton data if you're planning on transferring just one embryo. Having ICSI increases your bad numbers again too. Table three in this paper: is nice for finding your personal allowable risk when considering the short-term health effects.

The standard of care is to rush to IVF quickly, which is why I found so very interesting. Of course, at 35, "waiting another two years" doesn't seem quite like the "short delay" as described in the article. I would like to see people who know more than me discuss that article but have not found any such discussion yet.

I don't have answers for you. I wish I did. If it helps, the birth defect rate on IVF kids is, depending on how you count and which stats you use, about the same as the birth defect rate in Alaska and many of the defects are not serious. It's one thing to say "the birth defect rate is doubled" and another thing to say "The birth defect rate goes from 3% to 6% but that 3% number includes all the 20 year old parents and the 6% number includes all the 40 year old parents".

Then the question becomes - can you ethically go ahead and have a kid if it means that their life span might be shortened or their long term health might be compromised?

What if you had some other disorder in your family that increased the likelihood of an early death? Would you not have children because they might have health problems (many of which could be manageable) or have a shortened life span? Keep in mind that 30 or 40 or 50 years down the road, our medical world would hopefully be as far advanced again as we are now from the 70s. Keep in mind that we all carry health problems in our genes that catch up with us eventually.

As far as how IVF goes - it's not fun, but it's certainly not the worst thing I've ever done, medical or psychological. I spent most of the process wondering when it would get really bad. The worst part for me was the uncertainty. Now I have worries about how my kid will feel about it (studies say: IVF kids feel wanted and not weird and kids will always find something to tease each other about anyway) and whether or not she'll have health problems (but likely, if I didn't have this to worry about, I'd probably find something else to worry about.)

There might be an IVF support group in your town. There are online IVF support groups. There are many people here that have gone through IVF that you can message. 1.5% of all births in the US are IVF now, so IVF parents are easy to find. There are probably people in your life that would support you through it. It can be scary but you aren't alone.

And as for child-free - that would have been awful for me. Some of my dearest friends are child-free and despite the fact that they're perfectly happy, there are things I simply cannot express to them. Having kids changes you, for the better, the way travel and reading books and talking to strangers changes you, but there are people who live happy lives and never travel.

Lev Grossman wrote a lovely piece.

It's ok to want a biological kid. Adoption is not something that's easy or much cheaper than IVF, and if you have confounding factors it can be almost impossible.

Infertility is just a medical problem. It's a medical problem that huge numbers of people have. And, just like any other medical problem, it's OK to seek treatment. IVF isn't any more unnatural than any other medical treatment.
posted by arabelladragon at 6:08 PM on June 19, 2014 [6 favorites]

Purple, have you visited the Stirrup Queens blog center? They have a central list of all kinds of blogs, as well as specific people willing to answer questions about their experiences. Every type of fertility problem you can imagine, they have a resource link to. Nthing everything treehorn bunny said about finding people to talk to: very well meaning people have pushed us to "just adopt", invariably these same people have no idea of the price tag for adoption, the limited number of newborns, or the myriad issues that can crop up within different types of placement. People have other opinions about donor eggs, IVF, surrogates etc. that are based on TV shows or brief women's magazine articles, not research or experience. Joining the IF community, which is blog and message board driven, will provide support and info. I learned far more in the last three years from the online IF community than in the previous four years of infertility. You can find people doing their cycle at the same time as you, people who understand that a relative's sonogram post on Facebook brings mixed feelings, people comparing the price of injectable drugs (I ordered mine from Britain thanks to good advice). You will see you're not alone.

You suggest possible diminished ovarian reserve (DOR), but are you seeing a reproductive endocrinologist? For instance, an obgyn taking a FSH level might say, "this number is high, you're experiencing premature ovarian failure" but not use the more more modern measurement of AMH, which is standard among REs and held to be the more accurate test. Likewise my obgyn wanted me to do a 28 day challenge to prove I was ovulating; since my cycles are longer, but the 28 day measurement assumes I ovulate on the 14th day, I would fail the challenge, even though I ovulate. As awesome as many of them are, Obgyns and GPs have limited knowledge compared to a RE, just like REs are not delivery or pediatric specialists. We wasted two years based on a misdiagnosis from that ob/gyn, two years on ambivalence.

What omnomnom says about getting out of the ambivalent zone? Also true. Your emotions can be cloudy, mixed, confused...but to get a result of any kind you will have to take action. See a specialist and don't overthink taking that step, like I did.

Your AMH number is quantifiable, applying to your eggs. There are forty year olds who get pregnant naturally, and twenty year olds with few eggs that require help. AMH matters, not your age, in cases of DOR. Find out the number, and then the data will help you understand what you can do, and your chances. With DOR, I would suggest you explore the use of DHEA with your RE; DHEA is pretty new in practice, but has documented results of increasing AMH and antral follicles, overall increasing both natural and IVF conception.

Regardless though, I encourage you to lurk and then join the IF community.
posted by mitschlag at 6:15 PM on June 19, 2014 [1 favorite]

If it's the needles and hormones, have you struggled with PMT or hormonal contraceptions? If you haven't, you will probably be okay with them. I can promise you that the needles become really straightforward after the first week. I have to self-inject heparin and have had other tougher injections and I had a mild needle-thing because of shitty veins, but it becomes very ordinary and routine fast.

I made a list each time this came up and basically went down each option and ruled out what I wasn't willing to do and why. That pen-to-paper with reasoning process made me feel a lot more organised and calmer about fertility decisions. A lot will depend on how you feel about multiples - selective abortion, prematurity (can your job/life handle twins etc) and cost and availability in your area.

Also - look into actual risk outcomes. Like when they say oh your risk of X doubles over 40, it can mean that for every thousand babies, 4 were born with X instead of 2.

I had a preemie with health issues who turned out fine, but it was debatable for a while over whether she would have serious deficits. I have friends with kids with health issues. There will always be guilt because that's parenting, but it's not accurate guilt, just the vague miasma that you get when you're in charge of a small child's welfare.

You can control some of it - don't huff paint while you're pregnant, don't give your baby lead chips as a snack - but a lot of it is chance. IVF has so much science-driven certainty in it that the numbers feel like accurate predictions: "IVF babies will be 75% more premature" when actually it's a whole bunch of factors, many out of your reach and the IVF part is just a small sliver in that. The difference if you'd gotten pregnant now vs getting pregnant by IVF would be at most a small bump in risk - a couple of extra dice throws out of a thousand.
posted by viggorlijah at 8:32 PM on June 19, 2014

I find it super offensive when people say that being a parent is harder than IVF, and imply that you must not want it enough if you don't go through with IVF. It's great that science has given people options. But that's what it is, an option. It's not a requirement that you try it. Conceiving via IVF is no more or less virtuous than deciding to live child-free.

I'm guessing that this is in response to my previous comment. While I maintain that being a parent has been much harder for me than going through IVF was, I didn't mean to imply that you must not want it enough if you don't go through with IVF. Sorry that I expressed myself so clumsily. I guess I could have just said that I didn't find IVF to be that bad at all, compared to other common experiences.

I had a couple more thoughts for the OP:

1. A major concern I had was money. I just calculated what I have cumulatively spent on daycare for my 3 year old kid. It *dwarfs* what I spent on IVF!

2. I think it's possible to view IVF as something you are cornered into having to consider. But you can also view it as an alternative that you are very lucky to have access to. I found that mindset helped a little.

Good luck with whatever you decide!
posted by pizzazz at 10:54 PM on June 19, 2014 [1 favorite]

Any advice on how to make the decision of whether to do IVF or live child free?

There's another choice in there though. Is adoption an option for you? If you're this concerned about IVF and have discussed all the options with your medical team, that might be a good option for you. Would allay all your fears, would keep a baby/kid out of the evil that is most of the foster system, and you get to have the child you clearly want.

Just putting it out there as an option for you. Perhaps you've already considered and rejected it; that's totally okay of course.
posted by feckless fecal fear mongering at 8:37 AM on June 20, 2014 [1 favorite]

Hi. I have stage IV endometriosis and am currently undergoing ivf. As you probably know, it's far better for endometriosis cases than iui, as it bypasses the inflamed area of the pelvis between the ovaries and Fallopian tubes that the egg has to go through such month (I call it "running the endo gauntlet"). I vividly remember our first RE visit when the doctor told us as much, and me crying and saying "I really don't want to do IVF!" And she said, "No one ever WANTS to do IVF." So I can totally relate to not wanting it, not even for the specific reasons of how much it costs, or pumping my body with injections, or injections themselves, or increased risk of birth defects, although all those things suck of course. But it was more that IVF meant we had become this other category of person, the officially barren. It meant giving up hope for a natural conception, and I needed time to grieve that before I as ready. Luckily this whole process takes forever. Not really luckily, but I can say at this point that I am so happy IVF is a possibility for us. And so far, it's really not that bad. Our first cycle was canceled due to me ovulating early on my own, so I haven't had the egg retrieval or embryo transfer yet. But the injections are really no big deal. I actually found myself looking forward to them. After years of monthly "trying" and monthly failure, we were both pretty demoralized. But now we were actually doing something that has a much higher chance at making a baby. It's given us our hope back. And bonus, we can now just have sex for fun and intimacy. It doesn't have to be all wrapped up in duty and the aforementioned failure. Anyway, I am so sorry you're going through this. It's the hardest thing I've ever faced. Know that you're not alone. Good luck with whatever you choose to do.
posted by apostrophe at 9:39 AM on June 21, 2014 [2 favorites]

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