Why Do We Look the Other Way On IVF Addiction?

 

My reaction to the picture distributed by the fertility clinic was shock. Plain and simple.

In fact, my stomach turned queasy while my mind tried to process just what exactly I was looking at. The first word that popped to mind: Addiction

The breathless articles, though, on what led to the now ‘viral’ photograph — on the TODAY Parents website and on other news and feature sites — never mentioned addiction and that’s troubling in and of itself.

Instead the TODAY article noted:

The photo features a baby girl asleep inside a heart formed by hundreds of syringes and dozens of drug vials — just a fraction of what she used while undergoing five in vitro fertilization treatments.

If a street drug pusher released a photograph showing that many needles following a Rave Party we’d be outraged and encourage the user into rehab. But a fertility clinic releases it on their Facebook page and, it’s not only okay, it’s celebratory?

This is SO wrong on so many levels. First, what was the fertility clinic thinking? The twisted marketing begs these questions:

  • Why are we ‘normalizing’ this extreme? Flooding the body with mega doses of hormones is not without risk (both physical and financial that’s heightened with repeated courses). Some 15 years after I gutted my way through two full IVF rounds and one cycle for a frozen embryo transfer and well on to my next IVF with a new clinic before I kicked the habit …. I worry — STILL — about the long-term toxic effects that those mega dose hormones coursing through my body might have had on my future health. I don’t know what the actual health hazards are because fertility clinics and pharmaceutical companies have still not done longitudinal studies to assess them for women like me or the woman behind the photograph.

    Like a good drug pusher, they focus on the ‘high’ that may be awaiting you …

  • What does it say about society that we passively accept an invasive, expensive and once narrowly prescribed, medically-indicated procedure as today’s one-size-fits-all fertility treatment?
  • Is the dollar value of those vials actually worth it if mothers-to-be are compromising their future health (or that of the egg ‘donor’)?
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I get it: the social approval of being pregnant or being lauded for a baby bump gets out-sized glamour. I will remember 2015 for being the year that a child posed amid syringe needles became just another social media sensation.  (Just an aside: am I alone in worrying about the kind of pressure facing the child photographed to be perfect and fulfill every other dream that her mother might conjure?)

More Than One Outcome

I’m reminded of a doctor at UCSF who dealt with high-risk pregnancies in a moment of bioethical reflection on a panel ask, ‘does the parent’s right to have a child trump the rights of the child who may be conceived?”

The woman behind the photograph who submitted to those needles and drugs said, “For a couple out there still trying and maybe are on their third or fourth try, just hang in there. It was such a struggle, but it’s worth it.”

I respectfully disagree. While she might still be buzzing from the dopamine effect, let me make clear that there are many others whose ‘trips’ aren’t so pleasant.  No instead, they’re nightmarish.

My counsel to couples or women considering turning themselves into protracted science experiments is this: Don’t take fertility clinic claims (or Facebook marketing) at face value. Of course, you will only hear about the success narratives, but keep in mind: not all who ‘just keep trying’ will achieve a pregnancy and delivery.  Beware of the many fertility clinics, fertility service providers and pharmaceutical companies who are only too happy to feed your addiction. Just check out all the companies that are excited to be at the American Society for Reproductive Medicine (ASRM) annual meeting next week:

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American Society for Reproductive Medicine (ASRM) Annual Meeting Big Pharma Participants
Some of the ASRM Annual Meeting Big Pharma & Fertility Industry Participants

Look, I know that infertility sucks. I wouldn’t wish it on my worst enemy. I know the pressure you feel to ‘keep at it’ but it’s okay to break the IVF addiction. The withdrawal will not be easy, but no withdrawal from a potent, powerful dream ever is.

I am far from alone here in my story or my caution. Lesley Joy Brown, the first human conceived using IVF, has her own worries about this.  Louise has gone on the record saying that treatments today have “gone too far,” adding, “I worry about IVF mums being pumped full of hormones.”

Louise’s mother, died in 2012 at 64 after an undisclosed illness. As I wrote earlier, it seems Louise and I and many others will learn together what the long-term effects of fertility medicine have in store for us.

I leave you with Jefferson Airplane’s lyrics:

When logic and proportion
Have fallen sloppy dead
And the White Knight is talking backwards
And the Red Queen’s off with her head
Remember what the dormouse said
Feed your head

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12 thoughts on “Why Do We Look the Other Way On IVF Addiction?

  1. Great post, Pamela. It seems as if there is a huge taboo – not just from the corporates involved in the industry, but also the individuals who are chasing success at all costs, or who have had their take-home baby – in discussing the risks of assisted reproduction. I was aware of the risks, but it’s hard to consider them fully and objectively when we’re feeling desperate for that one outcome. I was aware of the risks, but not because my clinic discussed them with me. And I consider my clinic to have been quite good at considering the welfare of their patients/clients. (Though perhaps that came through government regulation, rather than their own motivations.) Physical risks, emotional risks, financial risks, risks of addiction – these are hidden and ignored. I’m so glad we have you speaking out on our behalf. Yes, I know I’ve said it before, but it’s worth repeating.

    That photo … shudder! So very disturbing. And the comments – yes, it’s nice that people can celebrate their IVF babies. But some of the stories – the multiples, the years and years on injectibles, one woman said she had stopped counting at 3500 injections (do some sums).

  2. I hate to admit that I mindlessly clicked “like” on that photo… but even as I did, there WAS something about it that bothered me. Thank you for articulating exactly why it was disturbing. Yes, the baby was adorable, and the photo was striking, but yikes, those needles… and yes, just a fraction of what the mom actually used.

    I do believe fertility treatments can become addictive for some women, having heard stories from many women, online & “in real life” who endured four, six, 10 or more cycles while chasing their dream of a child… and yes, some of them did eventually wind up with that precious baby… but at what cost to their health (physical & mental), their finances, their marriages? Of course they will say it was worth it, but…

    Part of me will always be sad that we never had the family we dreamed of. But I know that stopping treatment when we did was the right thing for us to do. I actually never did IVF, but three IUI cycles with injectables (plus several cycles of clomid before that) were quite enough for me. I was a wreck.

  3. Admittedly our experience with the fertility clinic was brief but it left such a bad taste in our mouths. Side effects were not discussed. Chances of success were not discussed. Physical and emotional health were not discussed. What was discussed? What they wanted to do and how we were going to pay for it. When we told them we weren’t going to do IVF they looked at us like we had three heads. It was only later that I found out how dismal our chances of success were…. It’s a business, pure and simple.

    I’d never thought about fertility treatment as an addiction, but you are so right. But a baby is the only acceptable outcome (as far as society is concerned). I think that too many people have the “Don’t give up, don’t ever give up” mentality that Jim Valvano so eloquently spoke of during his 1993 acceptance speech at the ESPYs. If a heroin addict took that same picture with their baby CPS would be called immediately.

  4. “I get it: the social approval of being pregnant or being lauded for a baby bump gets out-sized glamour.”

    This is the issue in our society. This is why I don’t judge those caught up in a IVF Addition or choose avenues to become parents I wouldn’t be comfortable with. This is also something that critics of third party reproduction and infertility treatments (most of whom have kids) continue to ignore.

    Our child filled society puts so much pressure on people to have kids. Not having kids or not adopting if you’re infertile is looked at as being a selfish inferior way to live. This is what drives people to go to the lengths they do to become parents. It’s only something if you have gone through infertility can understand. But at the very least those with kids need to do a better job of not outcasting and looking down upon their friends and family without kids.

  5. My very first reaction to this picture was anger at its one sidedness – and a desire to create my own with no baby in the middle and with the vials and syringes arranged in the shape of a broken heart.

    Also don\’t condone the mother\’s \”never give up\” message (or the clinic\’s use of it, obviously), a bit triggering since I, like her, did 5 IVF\’s. Why is it so easy for people to not be mindful of the fact that their outcome is not everyone\’s outcome?

    The one positive I felt, and I do hear your normalization concern Pamela, is that it showed the clueless outside world a visual indication of the intensity and gravity of going through treatments. I\’ve always said that in telling people I went through one surgery and ten failed fertility treatments it\’s as if I told them I went to the beach and picked my nose.

    I\’m wondering what kind of longitudinal studies are done on drugs administered for other diseases, and how that compares to the lack of research done on fertility drugs. One of the reasons we ceased treatments is that I felt the time had come to not put any more drugs in my body. When I mentioned this to people in the IF world, medical professionals and patients alike, I got a lot of strange looks.

    1. Sarah, these drugs can have all sorts of consequences nobody knows or really thinks of. I know there’s a lot of debate over whether there are any links to cancer, but there are other impacts on your health too. About two years after I walked away from fertility treatments, I was having a lot of abdominal discomfort, bloating, etc. I went for a bunch of tests, including an abdominal ultrasound and barium swallow. I was diagnosed with mild reflux as well as gallstones (which, after discussion with a surgeon, I opted not to remove at that point — although they’ve been bothering me a bit again lately…). I do have genetics working against me — apparently all my aunts & uncles on my dad’s side (including my dad) as well as many of my cousins have had their gallbladders out. But in reading about gallstones, I learned that they can be exacerbated by estrogen… and I had a vivid memory of my RE telling me that my estrogen level readings, after days of injections and nearing trigger day, were sky high. Hmmmm…. I was just reading Viv Albertine’s memoir — she was a punk rocker in the 1970s, who went through multifple IVFs and multiple losses — and she had to have her gall bladder removed too. But that’s not something you hear a lot about.

  6. Wow, that is a disturbing picture! I don’t want to begrudge anyone their journey, because I know that all our stories are different and we each have to understand our own limits. But I do find the “never give up!” mantra really frustrating. How about “Start or stop when you’re ready!” Said no infertility doctor ever.

  7. Before I read the accompanying text, I assumed that picture was a criticism of ART, not an endorsement. I am also freaked out by all those (used, years-old) syringes and bottles anywhere near that baby’s skin! I want to believe that this photo would bring home to people not acquainted with it how massive, and how artificial and invasive, this process really is, but that’s not what people are seeing. I am bewildered. But then again, I’m the one who complained because I didn’t think going to the doctor to have bloodwork all the time and being on mood-altering drugs sounded like a good way to have a family, and everyone thought that was crazy (I never did ART). Sigh.

  8. Ellen K.

    Well stated.

  9. I used to gather all the needles from my second round of IVF. It was a long protocol and I gathered all the needles and took a photo. Then, I was so sure that the IVF will work for us. I wanted to have a photo as a memory to show to my child one day.

    I deleted the photo, after the negative result. But the photo is still very vivid in my mind.

    Addiction. I couldn’t agree more. This is what I was, an addict, in the first decade of my infertility.

    I knew IVFs could leave me damaged. But still, I just could not stop. I was so depressed that I literally did not care if I died. The word seemed so dark that I did not want to live if being childless.

    The state fully paid for 6 rounds of IVF (also for ALL the drugs). But still, I wasn’t offered any counseling that I obviously needed much more.

    I paid additional 4 IVFs by myself.

    So yes, here I am. Living my life again, after 10 failed IVFs.

    Breaking point for me was when I went to Czech Republic for the 10th round of IVF and the drugs caused me horrible side affects. I was so swollen – I gained 5 kilos in few days – it was water, I was all swollen, I had problems breathing and walking. That was the moment when I realized that I do love life. And that I want to LIVE.

    That was the time I quit ALL fertility drugs for good.

    And then I lived with my DH happily ever after :)

  10. […] has never been more critical — especially since we can’t rely on fertility clinics to separate marketing hype from the […]

  11. […] IVF addiction is what it takes to get applause and validation, I am prepared to get […]

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