At work I live for information. Who, what, when, where and why are the key questions in journalism. They rarely let you down. (In life too). I almost want to know too much, especially before I interview someone. Knowing the answers, or what they might be, before you pose the question, is perversely a key part of live interviewing. Hence why I work so closely with my producers who glean as much detail as possible - through a mixture of research chats with the person in question (if they are available) and reading. And then I read some more and we keep going until we feel we know all we can.
Jun 11, 2022·edited Jun 11, 2022Liked by Emma Barnett
I hear you in so many ways.
I too had my endo lasered, back in 2013.
I normally geek out, learning about everything/anything, but IVF/endo have so many red flags, I just don’t want to know. I want to sit in a place of hope and belief (and denial?), and be the medical exception.
At 41 and single, I start my 1st IVF round next month to harvest eggs (statistically futile, but I want to feel hope for the future), before I make lucky embryos for transfer in September.
I’m sitting here wishing both of us a wealth of health and luck. I believe.
I relate. I’ve tried and been unable to have children in two different relationships over several years. Many doctors appointments, many scans, many tough confusing conversations and not much fun!
The thing that makes me most angry is when people say women don’t know their fertility declines with age - hahaha! How could we not? In my case this knowledge has been a real pressure and all medical advice seems to just add negativity and stress. I envy friends who never had to learn their hormone levels or spend so much time worrying about things that are not possible to control.
It seems that all the facts can get in the way of our natural instincts and ability to make decisions. I’m trying now to listen to what I actually want and believe, rather than if I’m on the right side of the stats.
Spot on. I also have endometriosis and infertility. My vag has seen more action from the probe than ‘natural’ baby making LOL. I know far more about my body than I want - seen pics from my lap that show my poor organs deformed from this disease.
I too wish I didn’t have to know these things. Because it’s painful and unfair it has to happen to us - I’d wish it on no one. Your head can swirl with dr Google research papers and forums, and what the clinics do/don’t say. It’s overwhelming.
The power it DOES give however is to self - advocate. I know what questions to ask and when to push for things. That helps. But it is most definitely exhausting sometimes. And if I didn’t have to know - I’d take that. X
Oh, trying not to listen... Most definitely, sometimes. “At your age success rates are less than 20%”. “At your age up to 75% of embryos are abnormal”. “Your husband may be older, but it’s still probably your eggs that are the problem”.
What am I supposed to do with that? Stop trying? Stop believing?
Likewise, at the other end of the spectrum, “I know a woman who had a baby at 45”. Yes. Yes you do. So do I . But there’s a reason why we all talk about those stories. We don’t talk about the women we know who had a baby at 29, do we?
I used to get upset with my husband for not being remotely interested in learning or researching anything about IVF. His approach was ‘tell me what I need to do and I’ll do it, me knowing the details won’t help’. It felt like he cared less. I felt alone, researching for hours, trying to figure out what I should do or what my chances were. But maybe he was right all along. If we can’t do anything with the knowledge - if even the doctors can’t do anything with everything they know - why the self torture?
I've felt this - though in the context of recurrent miscarriage rather than IVF or endo. It's only natural, I think, when the 'knowledge' presented to you is so incomplete and inconclusive. You might be bombarded with what seems like technical detail and information about your body, but it's an illusion. When the treatment options seem to be little more than a roll of the dice, when there's often very little you or your doctors can *do* with the information they're presenting to you, the easiest thing can be to dissociate, I think. And that's before you even get into the murky, half-knowledge of alternative/holistic things to 'try'! Thank you for writing about all of this. Sending love. xx
Snap!!! I’ve been a detail person my entire life, it’s been a key part of both my careers (auditor and perinatal support worker) but there is still so little I know about IVF despite being in deep for over 5 years!
I’ve poured longer over which type of vinegar to use in a recipe than I did over which drug protocol to try. I think part of it for me was deep down knowing there were no guarantees, so even if we had the most ‘ideal’ if circumstances, it wouldn’t take my pain away, so I became disenchanted.
But that’s another reason why it’s such a hard journey, you’re just not yourself and the skills and techniques that usually get you through stuff just aren’t working for you either. In short, at times, it sucks
But as does knowledge about women’s health in general, the amount of ladies who get referred to mental health services before receiving physical medical care is astounding, like some kind of through back to the witch hunt days. ‘ oh my back really hurts’ but the doctor asks ‘how’s your mood been? How are your periods’. Rant over! Thank you so much for this space xx
So enjoying and appreciating your thoughts and writing! Thank you. I mostly post new songs here (like this monorhyme about motherhood... https://lailarad.substack.com/p/09) but I also shared a reading from a novel I'm working on... not so loosely based on my experience of IVF in a time of Covid... https://lailarad.substack.com/p/07. Looking forward to your next post and here's to selective listening!
Hi I don't know were to post this but just need to talk to people who can relate maybe. I've been going through infertility for 4 years now had 2 failed rounds of ivf. It was my b day on Thursday and family members did not wish me happy birthday because they felt I've been distance and they felt like I don't want to speak to them etc when in fact I've just been greaving the loss of a negative pregancy test and the lost of an embryo. They didn't understand what I was going through. I just felt like I was being bashed. Then after sorting out that with my family. On my husbands side I was getting bashed about this but not related to fertility. No1 will get the draining of the treatment and the disappointment after it, especially after all the procedures u go through. Can anyone relate?
If you’ve not already read it , Hilary Mantel’s memoir, ‘ Giving up the Ghost’ is a must … it describes her experience with her gift of the written word ….
I have never had endo, but I know from experience that with my IVF, I was so naive - we got 10 good eggs - wowsers I thought, I can take my pick! Plenty there for lots of future babies. Can't believe I thought that now, knowing how hard it is to get one of those little embies to stick. But stick it did, that very first time. Never since though. No rhyme nor reason to what worked that first time. I hear you Emma. Sometimes there are no answers and questions are futile. x
I can relate! The thing about science is, it gives you statistical information, along the lines of, 20% of women will react like this to a certain procedure. I did read a lot when I was going through IVF but the statistics never helped. You really need to know how YOU are going to react to the procedure. And you can’t read about that anywhere. Statistically it was very unlikely that I would have TWO ectopic pregnancies in my life. Yet I did, and that’s what mattered to me. Statistically, it was more likely that I would remain childless than that I would have two children. Yet I did! My husband and I fretted over the number of fertilised eggs to have put back because he really didn’t want twins or triplets… again, the statistics told us nothing. We had three eggs put in and we didn’t have twins or triplets. I also found some of the language disheartening. My body only ever produced 2 or 3 eggs with each cycle of hormone treatment while most women make 8-10. This made me a “low responder” - hated that! I am sure we are all informed enough to have earned the right to tune out from time to time …
Having read this, your article in The Times, and listening to your episode on Happy Place, I echo a lot of your sentiments even though we are in slightly different places; as you mentioned about not realising you could miscarry after a successful IVF attempt, we thought we would at least get to the embryo transfer stage after conceiving naturally twice before (even though both ended in silent miscarriages).
Every time we are left with no answers, only possible maybes, which seems crazy considering how much it costs. Likewise, feeling like a pin cushion, being someone who has had so many meds, as well as myself and my husband making a million lifestyle changes to be in the best possible position for treatment, and as if the whole thing is just 'another process', only to find it hasn't worked again and there's no reason why, can be rather disheartening. However, you just have to keep on keeping on as you can't let it take over your life.
Postcode lotteries are a nightmare as well; I know I am fortunate in being able to afford treatment, and certainly don't think it is a right, but knowing that I need to pay up to £22k for two further rounds of two cycles when others may get that for free, is totally infuriating.
Having said all that, I am so very lucky to have wonderful people to work with, some sadly who've been through the same thing, that enable us to b*tch and moan to our heart's content, leaving us both/all feeling better.
I do hope it works out for us both and thank you for taking the time to bring this to the forefront.
Wow, your story is my story. I too wasn't diagnosed with endo until my 30's and was TTC. I also had a lap. I also was told to try naturally for months after the lap to no avail, waisting precious time. At first I felt empowered learning all these things and systems within my body that I previously didn't know. But I was just saying this week how I WISH I could go back to the me 3 years ago who was blissfully ignorant of all of this. The idea of conceiving with no doc visits/procedures and maybe one ultrasound once your 8ish weeks, is unthinkable to me. I know our bodies are complicated, and science has come a long way, but I also think there is a lack of motivation to learn more about this disease and infertility (like root causes rather than prescribing drugs and BC to mask the issue). When after failed transfers and delays, your clinic tells you "we'll do whatever you want to do", I just want to scream. Aren't you the experts I'm paying thousands of dollars to? Shouldn't YOU be telling me what ALL my options are? I appreciate them trying to include me in making these decisions, but I'm tired of constantly advocating for myself EVERY SINGLE step of the way. I've done all the things, all the research, all the healthy and natural remedies and lifestyle changes, along with all the procedures and IVF. It's exhausting. And we just keep putting one foot in front of the other, and hold onto the little threads of hope we can. Thank you for sharing.
I hear you in so many ways.
I too had my endo lasered, back in 2013.
I normally geek out, learning about everything/anything, but IVF/endo have so many red flags, I just don’t want to know. I want to sit in a place of hope and belief (and denial?), and be the medical exception.
At 41 and single, I start my 1st IVF round next month to harvest eggs (statistically futile, but I want to feel hope for the future), before I make lucky embryos for transfer in September.
I’m sitting here wishing both of us a wealth of health and luck. I believe.
With love XX
I relate. I’ve tried and been unable to have children in two different relationships over several years. Many doctors appointments, many scans, many tough confusing conversations and not much fun!
The thing that makes me most angry is when people say women don’t know their fertility declines with age - hahaha! How could we not? In my case this knowledge has been a real pressure and all medical advice seems to just add negativity and stress. I envy friends who never had to learn their hormone levels or spend so much time worrying about things that are not possible to control.
It seems that all the facts can get in the way of our natural instincts and ability to make decisions. I’m trying now to listen to what I actually want and believe, rather than if I’m on the right side of the stats.
Spot on. I also have endometriosis and infertility. My vag has seen more action from the probe than ‘natural’ baby making LOL. I know far more about my body than I want - seen pics from my lap that show my poor organs deformed from this disease.
I too wish I didn’t have to know these things. Because it’s painful and unfair it has to happen to us - I’d wish it on no one. Your head can swirl with dr Google research papers and forums, and what the clinics do/don’t say. It’s overwhelming.
The power it DOES give however is to self - advocate. I know what questions to ask and when to push for things. That helps. But it is most definitely exhausting sometimes. And if I didn’t have to know - I’d take that. X
Oh, trying not to listen... Most definitely, sometimes. “At your age success rates are less than 20%”. “At your age up to 75% of embryos are abnormal”. “Your husband may be older, but it’s still probably your eggs that are the problem”.
What am I supposed to do with that? Stop trying? Stop believing?
Likewise, at the other end of the spectrum, “I know a woman who had a baby at 45”. Yes. Yes you do. So do I . But there’s a reason why we all talk about those stories. We don’t talk about the women we know who had a baby at 29, do we?
I used to get upset with my husband for not being remotely interested in learning or researching anything about IVF. His approach was ‘tell me what I need to do and I’ll do it, me knowing the details won’t help’. It felt like he cared less. I felt alone, researching for hours, trying to figure out what I should do or what my chances were. But maybe he was right all along. If we can’t do anything with the knowledge - if even the doctors can’t do anything with everything they know - why the self torture?
Thank you for this space xx
I've felt this - though in the context of recurrent miscarriage rather than IVF or endo. It's only natural, I think, when the 'knowledge' presented to you is so incomplete and inconclusive. You might be bombarded with what seems like technical detail and information about your body, but it's an illusion. When the treatment options seem to be little more than a roll of the dice, when there's often very little you or your doctors can *do* with the information they're presenting to you, the easiest thing can be to dissociate, I think. And that's before you even get into the murky, half-knowledge of alternative/holistic things to 'try'! Thank you for writing about all of this. Sending love. xx
Snap!!! I’ve been a detail person my entire life, it’s been a key part of both my careers (auditor and perinatal support worker) but there is still so little I know about IVF despite being in deep for over 5 years!
I’ve poured longer over which type of vinegar to use in a recipe than I did over which drug protocol to try. I think part of it for me was deep down knowing there were no guarantees, so even if we had the most ‘ideal’ if circumstances, it wouldn’t take my pain away, so I became disenchanted.
But that’s another reason why it’s such a hard journey, you’re just not yourself and the skills and techniques that usually get you through stuff just aren’t working for you either. In short, at times, it sucks
But as does knowledge about women’s health in general, the amount of ladies who get referred to mental health services before receiving physical medical care is astounding, like some kind of through back to the witch hunt days. ‘ oh my back really hurts’ but the doctor asks ‘how’s your mood been? How are your periods’. Rant over! Thank you so much for this space xx
So enjoying and appreciating your thoughts and writing! Thank you. I mostly post new songs here (like this monorhyme about motherhood... https://lailarad.substack.com/p/09) but I also shared a reading from a novel I'm working on... not so loosely based on my experience of IVF in a time of Covid... https://lailarad.substack.com/p/07. Looking forward to your next post and here's to selective listening!
Hi I don't know were to post this but just need to talk to people who can relate maybe. I've been going through infertility for 4 years now had 2 failed rounds of ivf. It was my b day on Thursday and family members did not wish me happy birthday because they felt I've been distance and they felt like I don't want to speak to them etc when in fact I've just been greaving the loss of a negative pregancy test and the lost of an embryo. They didn't understand what I was going through. I just felt like I was being bashed. Then after sorting out that with my family. On my husbands side I was getting bashed about this but not related to fertility. No1 will get the draining of the treatment and the disappointment after it, especially after all the procedures u go through. Can anyone relate?
If you’ve not already read it , Hilary Mantel’s memoir, ‘ Giving up the Ghost’ is a must … it describes her experience with her gift of the written word ….
I have never had endo, but I know from experience that with my IVF, I was so naive - we got 10 good eggs - wowsers I thought, I can take my pick! Plenty there for lots of future babies. Can't believe I thought that now, knowing how hard it is to get one of those little embies to stick. But stick it did, that very first time. Never since though. No rhyme nor reason to what worked that first time. I hear you Emma. Sometimes there are no answers and questions are futile. x
I can relate! The thing about science is, it gives you statistical information, along the lines of, 20% of women will react like this to a certain procedure. I did read a lot when I was going through IVF but the statistics never helped. You really need to know how YOU are going to react to the procedure. And you can’t read about that anywhere. Statistically it was very unlikely that I would have TWO ectopic pregnancies in my life. Yet I did, and that’s what mattered to me. Statistically, it was more likely that I would remain childless than that I would have two children. Yet I did! My husband and I fretted over the number of fertilised eggs to have put back because he really didn’t want twins or triplets… again, the statistics told us nothing. We had three eggs put in and we didn’t have twins or triplets. I also found some of the language disheartening. My body only ever produced 2 or 3 eggs with each cycle of hormone treatment while most women make 8-10. This made me a “low responder” - hated that! I am sure we are all informed enough to have earned the right to tune out from time to time …
i help women get pregnant, stay pregnant and have healthy babies naturally: https://fertilitywhisperer.substack.com/p/a-brief-look-at-the-history-of-traditional
Having read this, your article in The Times, and listening to your episode on Happy Place, I echo a lot of your sentiments even though we are in slightly different places; as you mentioned about not realising you could miscarry after a successful IVF attempt, we thought we would at least get to the embryo transfer stage after conceiving naturally twice before (even though both ended in silent miscarriages).
Every time we are left with no answers, only possible maybes, which seems crazy considering how much it costs. Likewise, feeling like a pin cushion, being someone who has had so many meds, as well as myself and my husband making a million lifestyle changes to be in the best possible position for treatment, and as if the whole thing is just 'another process', only to find it hasn't worked again and there's no reason why, can be rather disheartening. However, you just have to keep on keeping on as you can't let it take over your life.
Postcode lotteries are a nightmare as well; I know I am fortunate in being able to afford treatment, and certainly don't think it is a right, but knowing that I need to pay up to £22k for two further rounds of two cycles when others may get that for free, is totally infuriating.
Having said all that, I am so very lucky to have wonderful people to work with, some sadly who've been through the same thing, that enable us to b*tch and moan to our heart's content, leaving us both/all feeling better.
I do hope it works out for us both and thank you for taking the time to bring this to the forefront.
Wow, your story is my story. I too wasn't diagnosed with endo until my 30's and was TTC. I also had a lap. I also was told to try naturally for months after the lap to no avail, waisting precious time. At first I felt empowered learning all these things and systems within my body that I previously didn't know. But I was just saying this week how I WISH I could go back to the me 3 years ago who was blissfully ignorant of all of this. The idea of conceiving with no doc visits/procedures and maybe one ultrasound once your 8ish weeks, is unthinkable to me. I know our bodies are complicated, and science has come a long way, but I also think there is a lack of motivation to learn more about this disease and infertility (like root causes rather than prescribing drugs and BC to mask the issue). When after failed transfers and delays, your clinic tells you "we'll do whatever you want to do", I just want to scream. Aren't you the experts I'm paying thousands of dollars to? Shouldn't YOU be telling me what ALL my options are? I appreciate them trying to include me in making these decisions, but I'm tired of constantly advocating for myself EVERY SINGLE step of the way. I've done all the things, all the research, all the healthy and natural remedies and lifestyle changes, along with all the procedures and IVF. It's exhausting. And we just keep putting one foot in front of the other, and hold onto the little threads of hope we can. Thank you for sharing.