The Side of IVF You Won’t Hear About in the Media

The Untold Stories of IVF

The Side of IVF You Won’t Hear About in the Media

May 16, 2018 Firsthand Experience Voices 14
IVF miscarriage

‘Bamberlamb’ is from the Midlands area in England and was 34 when she began IVF after two ectopic pregnancies in her twenties. She waited until she was 34 due to a waiting list for IVF on the NHS.  After her IVF miscarriage she began a blog about living with infertility. She works full time as an administrator in an industrial based business and has been married more than 20 years. An animal lover and someone who enjoys the great outdoors, she is also opinionated about infertility and hates how it is a taboo subject. She strives to break those taboos. This is her story:

IVF is marketed as the way forward for anyone who is struggling to get pregnant or like me, had 2 ectopic pregnancies that destroyed my Fallopian tubes. IVF clinics have a weird way of building you up and getting you on board with their program – the positivity bandied about from the medical professionals make you believe you are in good hands with the best chance possible of obtaining that much desired child at the end of the whole franchise. I say franchise, as there is a lot of money to be made from infertility. Their information leaflets are slick and glossy and give wonderful statistics to successful pregnancies but there are discrepancies – what’s denoted as a ‘successful pregnancy’ is not to be confused with the ‘live birth rate’ – there’s a huge difference. 
“IVF clinics have a weird way of building you up and getting you on board with their program.”

What IVF clinics don’t prepare consumers (not patients) for is that most treatments end in failure and many resulting pregnancies fail for a variety of reasons, mine was miscarriage. But don’t despair – this isn’t seen as a negative, no! Indeed, it was put to me my miscarriage was a success, because I got pregnant! Heaven forbid I should be devastated, after all it’s proof that it could work for me, is what I got told. No room for tears or sadness or grieving, on with the next embryo transfer ASAP!

See also  "No One Ever Explained IVF Statistics, Risks, or Likelihood of Failure"

No mention of being mentally prepared for the possibility that I may be dealing with another miscarriage, a pregnancy loss, or treatment failure. Discovering I have endometriosis and that probably caused my ectopics and being told the best cure for it was pregnancy. No offer of counselling, Nowhere left to go then but back home to an empty house and then head on to work with empty arms and broken hearts and digest all of this information to myself, because I’d told next to nobody about our IVF treatment.

“According to the IVF clinic my miscarriage was a success, because I got pregnant! Heaven forbid I should be devastated.”
So what happens after treatment failure or miscarriage? You have a 10 minute slot on the conveyor belt to schedule your next plan of action and associated costs you’ll incur. 10 minutes to try and make sense of what went wrong and digest what’s being said/sold to you. Miscarriage isn’t managed by the clinic – they fob you off and make you attend the maternity unit next door where you run the gauntlet of pregnant ladies waiting for their scans whilst you’re bleeding and not knowing if you’re having another ectopic pregnancy. You feel abandoned, stressed out, terrified and grief stricken being placed in the most distressing situation imaginable with other pregnant women chatting happily about their bumps and how far along they are when you know your pregnancy is failing and are already a survivor of previous pregnancy losses.
“You’re treated with derision until blood tests reveal hCG in your bloodstream.”
You’re not believed by the staff when you tell them you’re pregnant because you can’t give them a clear date of your last menstrual period as you’ve been through IVF (which screws up your menstrual cycle) and there’s been no communication from the clinic next door to back up anything you say, so you’re treated with derision until blood tests reveal hCG in your bloodstream and prove that you are indeed pregnant. But you miscarry anyway and endure 2 weeks of visits every 48 hours to the scan clinic next door to the IVF clinic to have repeat bloods drawn to make sure this isn’t going to be another ectopic pregnancy, with no support from the IVF clinic whatsoever.
“You have a 10 minute slot on the conveyor belt to schedule your next plan of action and associated costs you’ll incur. 10 minutes to try and make sense of what went wrong and digest what’s being said/sold to you.”
Your embryo supply runs out and you’re convinced by the doctors you should try one more round of fresh IVF; you re-mortgage the re-mortgage already on your home to pay for the fresh cycle.  This cycle kills off one ovary and yields a single egg from the other ovary and when you meet with the doctors they are horrified that this has happened and have no ideas why but they decide to continue with the embryo transfer because ‘it only takes one embryo’ and they are the doctors, they know best, right?
“The doctors have no ideas ‘why’ but they decide to continue…and they are the doctors, they know best, right?
A follow-up appointment arrives to discuss the treatment failure and you walk in to be met with a room filled with happy couples who have all had their BFP’s (Big Fat Positives) from their respective treatments who are there for their last consultation before being transferred to the care of the maternity unit next door because they’ve reached the 6 week mark and you sit listening to their excited chatter knowing this will never be you, eyes downcast the whole time, heart broken, not dissimilar to the neighbouring maternity unit experience. The receptionist is apologetic but it was ‘the only time we could fit you in.’ You meet the consultant who offers further more advanced, more scientific, more expensive treatment but as you can’t get a satisfactory reason as to why your last cycle failed or why your ovary has given up, you decline any further procedures. 
You meet the consultant who offers further more advanced, more scientific, more expensive treatment but as you can’t get a satisfactory reason as to why your last cycle failed or why your ovary has given up, you decline any further procedures.
So that’s all folks – The End. You’re shown out of the rear exit as you’re sobbing so hard you can’t face walking through the reception area with happy couples facing a future you’ll never have. Cut adrift, left to figure out the enormity of the rest of your life without children with no support offered whatsoever. Nobody to talk to, a huge waiting list for the infertility counsellor who is based at the IVF clinic you can’t face going back to, to see the collage of baby pictures greet you as you walk in the door like a smack in the face. The IVF clinic situated next door to the maternity hospital where the very pregnant ladies stand outside to smoke cigarettes or rush in to give birth that you also have to walk past to enter the IVF clinic.This is the side of IVF you certainly won’t hear about in the media.
If you have an #UnmaskingIVF story to tell, please contact us at info (@) reprotechtruths [dot] org.


14 Responses

  1. Aimee says:

    Great post sista…
    And if I may add on to that…
    * Going into fertility acupuncturists as if that’s going to improve anything.
    * The number of people who tell you to just relax and the IVF will work.
    * The lie the IVF doctor tells you that donor egg IVF has 50-80% success rate when it’s actually a 50-80% *greater* chance of success, so if you only had a 3% chance of getting pregnant, your odds only went up to <6%.
    * The clinics like mine who actually don't do a "what went wrong" meeting – all I got on the 5 of 6 failed transfers were "let's try again" via telephone. No actual research into what might have happened, no change in protocol unless I specifically asked for it. And same went for the miscarriage – my baby died at 9 weeks and they offered nothing except a pill to miscarry at home (it was only on the internet much later that I found out they could have done a D&C and had them look at the embryo to see what was wrong (not to mention the sex), and nothing more beyond seeing when we wanted to try again.
    * The clinic that, when you've decided that 9 failed embryos are enough for your mental health, accuses you of "not giving the other remaining embryos a chance" and doesn't give you the opportunity to donate them to research (it's either give our embryos to another couple – oh hell no – or destroy them…zero interest in science)..and then you never hear from them again after you've given them $60K+ of your entire savings, credit card and retirement…because it's just business to them.
    * The IVF doctor that asks you if you want to get a surrogate…literally asking a 40something woman if she has a friend or sibling…yeah, like I have lots of 20somethings in my close circle of friends (do i ask my friend's kid? um, no…)…not to mention another $100K to cover the cost of surrogacy…
    * The majority of companies in the US who do not cover fertility treatments and finding out from your husband's employer that they won't consider it – but they'll pay for the cost of a sex change if you want that.
    * The ridiculous comments of friends, family, and complete strangers, and the ones who've made it into parenthood post-IVF suddenly acting like they have all the answers because it worked for them. You know, the "don't give up" crowd that makes you want to punch a wall.

  2. Bamberlamb says:

    There’s hidden costs with ivf too… storage fees, transfer fees for any frozen embryos and the forgotten costs of transit to and from appointments for procedures… you really need to write a post for this blog darling I could cry reading your words… people need to be educated and these stories need to be heard!

    • Aimee says:

      (just re-reading your post and seeing your replies, sorry for the delay!) Oh gawd yes the storage and transfer fees – mine was $600 per year to keep the embryos on ice, and along with the $20K+ I spent on the initial donor fee and fresh transfer, the transfer of the next 8 embryos cost me ~$2,500-3,000 per cycle depending on what procedures occurred, because nothing was covered by insurance (beyond, ironically, the birth control pills I had to go on between each to regulate me to fit into THEIR schedule since they only did IVF in batches, every other month). And we could toss in the cost of therapy that goes along with this, lost time away from work/clients, not to mention the physical side effects that occurred due to the PTSD – my herniated disc in my back that I threw out after my miscarriage because I was walking along in such tension for so long, or my retina that spontaneously detached which even my eye doctor said was idiopathic and could have been brought on by long term stress…and the cost of adoption which saw us, along with IVF, lose over $70K of our hard-earned savings, retirement, and credit card to cover. It’s bullshit.

  3. Ashley says:

    My brief stint with the infertility clinic (the only one in our area) was quite callous. I felt like IVF was pushed on us without trying any lesser-invasive protocols first and when we confessed to not having the money to give it a try, we were turned away with nary a “good luck.” I was diagnosed with PCOS but never did the doctor tell me all the health issues that could mean; there was literally no mention of the increased potential for diabetes, heart disease, ovarian cancer, nothing. And, when I knew our round with Clomid didn’t work and I was crying uncontrollably as the nurse took my blood for the pregnancy test I knew was negative, the nurses acted like I was a head case and couldn’t get rid of me fast enough. It was so cold, a transaction so void of human compassion in a field I thought would have the most. It was so utterly heartless.

    • Bamberlamb says:

      I am so sorry to hear of your experiences, I fail to understand how these people can be so callous especially considering the environment they are working in. Thank you for sharing, it takes courage to share these sorts of things and I know sometimes it can bring forward pain and anguish all over again. Thinking of you xxx

    • Aimee says:

      Ah yes, the stone cold faces of the people in the clinic when a transfer fails or you miscarry. My doctor called me to tell me about my failed transfers, but when we were in the office at our “graduation appointment” to take a final look at our baby on the monitor before I could go to a regular OB, only to find out our only viable pregnancy was over and he was inside of me, dead? Not a single person in the clinic as we walked out balling stopped to offer a hug. Fuckers. But they were happy to have us back for our 5th and 6th final attempts at DEIVF, ugh.

      And yes, this is definitely big business. Our clinic lied and told me, at 40-41-42 that I had a 50-80% chance of getting pregnant with DEIVF, but one of the little known facts is that this number is a lie, because if you are over 40 it’s a 50% *greater* chance than you had before…meaning if you only had a 4% chance of getting pregnant, your odds go up to 6%. I learned this after I had finally quit treatment. Seriously wish I’d kept the paperwork so I could sue their asses.

  4. Great post Bamber and a true reflection of many women’s experience. The clinics don’t like to discuss failure. I was laughed at when I asked if my treatment regime (very high-dose stims that resulted in a severe LH surge and nuked eggs) had anything to do with my cycle failure. Confusion, slip-ups and fudging characterized my IVF experience. And yeah the baby posters everywhere – I felt like I was trapped in a sci-fi film. Thanks Bamberlamb for publishing this x

    • Aimee says:

      I always was amazed to hear that people had meetings at their clinics after failed transfers to talk about what happened and what they might do differently. My doctor simply called me on the phone to tell me it failed and asked when I want to try again, with no suggestions to changing protocol. The only times protocols were changed were when I demanded it – getting my thyroid TSH down because the drugs tripled its levels, trying ERA, endo scratches, etc. No one ever said “let’s find a way to make this work” – instead, the old man’s textbook response was “it’s a numbers game”. Bullshit.

  5. Li says:

    My goodness… I live in Canada and this has been my experience exactly (only I’ve never gotten pregnant). But the lack of information, the rigid adherence to a protocol that is never explained or changed, the hard sell to pay more though the odds are astronomically low – it all resonates with me. And I’m still in it, because despite living in a major city, my clinic is the only game in town, and I drank their Kool-Aid, and it’s not out of my system yet. Best of luck to us all!

  6. Nathalie McCaughey says:

    Thank you so much for this Post!!! You and all of the wonderful ladies who have commented, have just further cemented that a decision I took almost 12 years ago was the right one. I have been grappling with this decision for many years and by some stroke of an angels wing, came across your writing.

    I went to THE best known and hailed as miracle working IVF clinic in Melbourne – Australia and after the appointment, where my husband and I were flat out told, I would never be able to conceive without any explanation of the “WHY” by the FEMALE IVF “expert doctor”, I came out of it with a strong feeling of unease. Not wanting to “give up” I decided to go to another well known IVF clinic simply putting my gut feel aside. Again the whole “I will make your miracle happen spill” and “just sign here on the dotted line”. It just did not sit right. Neither doctors could tell me WHY I cannot have children, only that without THEIR intervention a child would not happen for us. I left both places stating that I had to think about it.

    I went back to the first clinic after about three months and the female doctor from the first time around proceeded to “explain” the procedure by taking both my husband and me out of the equation: “First, I will make you ovulate, then I will use your husbands sperm and ….” Thank GOD she did not offer to “harvest” my husband herself…anyway I am digressing but you get the idea. Once more I came out of this meeting with a bad gut feeling. I just couldn’t get myself to sign the papers. It did not feel right. But I also had this whole onslaught of WHATIF thoughts, shouldn’t you give it a fair go etc.

    I traveled all the way from Australia to Germany to see Professor Hans-Peter Zahradnik (very well known fertility expert in Germany) at Freiburg University. He reviewed all of my blood works, did a scan of my uterus and ovaries and an MRI of my brain (yes he was looking for indications of whether my pituitary gland was intact) and in the end he took my hand looked me in the eyes and said: ” I can see you are a very smart and lovely woman who is going through a very tough time and wants answers. The truth is, I have NO answers for you. There are no physiological reasons, that I can find, why you and your husband are not getting pregnant. You are one of those very frustrating cases for me. The only thing I can say to you, is to try to be grateful for what you have been given and leave the rest up to a higher power.”

    It was the hardest “pill” I had ever to swallow but in hindsight, this wise old man was the kindest person I could have ever asked for to cross my path. Reading your experiences combined with the honesty of Prof. Zahradnik, have cemented that my decision NOT to “give it all on the path of IVF” was the right decision for me and believe it or not, I have forgiven myself for it.

    • Editor says:

      Thank you, Natalie, for sharing here. Your story will help others understand the complexities that accompany this deeply personal and complicated decision-making process.

  7. […] written on this topic from the patients perspective for several years now and shared other evidence of misleading advertising. We  asked if the […]

  8. […] limits of ReproTech. The ReproTech industry does a masterful job selling IVF and related treatments. […]

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