Let's tell the truth about what it's REALLY like to experience infertility

[bananafish81]

Hi all

I’m a longstanding poster on the infertility boards, although since stopping treatment I’ve stepped back from most threads - though I spend a fair amount of time donning my hard hat and getting into arguments with people saying idiotic things on AIBU about infertility!!

So much of the narrative around infertility and pregnancy loss contains stories of hope, and staying positive, and how 'it'll all be worth it when you have your baby in your arms’. The vast majority of books I read when we were going through treatment all had the obligatory 'miracle baby' happy ending.

I didn't want endless inspirational positivity. I wanted to read a book that acknowledged that infertility and pregnancy loss can be deeply traumatic, desperately unfair and utterly unrelenting.

I wanted to read a book with stories from real women, sharing the real truth about the unique pain of infertility & pregnancy loss - to help me feel less alone.

I finally found this when I found forums like MN, but I wished I’d been able to find the community of women earlier.

So I decided to try and write a book to try and address this - inspired by and in celebration of the incredible women in infertility communities such as MN. More about the project here: uberbarrens.club/

And I need your help!

I would love to hear from anyone who's experienced infertility and / or pregnancy loss - regardless of how their story has played out. My goal is to represent as many different perspectives as possible about people's own experiences of their journey - whether current or past, whether successful or not.

I’ve put together a questionnaire to enable you to contribute your story (anonymously if you so wish):

uberbarrens.club/share

The questionnaire includes sections for primary infertility, secondary infertility, donor conception, parenting after infertility, adoption after infertility, as well as reaching the end of the road - all and any experiences ‘count’ - your contributions would be enormously gratefully received.

I’ve mentioned this project on a couple of threads, and I’ve been absolutely overwhelmed by the responses from lots of MN-ers (the questionnaire is anonymous, but lots of respondents have mentioned MN as a source of support!) - I’d be honoured if any more if you fabulous women would consider sharing your stories as well.

My hope is that this will help others in the same boat feel less alone - and that ignorant people who just don’t get it, will have a better understanding of the shit we go through

(I hope that MN don’t delete this as I’m not a journo, I’m a MN poster who wants to celebrate this incredible community, and try to give us a voice!)

Thanks so much for getting this far, you women are rock stars

xxx

[bananafish81]

Also, if you've ever got pissed off with infertility bingo comments about the miracle power of staying positive and relaxing, you might appreciate this ranty piece I wrote for World Childless Week!

Infertility and the tyranny of positivity - Why you don’t have to join the cult of positive thinking when you’re struggling to have a baby

[CountessVonBoobs]

Really really great piece, banana. (I share your enthusiasm for trying to get people to read Bad Science and learn to critically evaluate woo.)

I am sure you'll receive a lot of stories and support.

[juneybean]

Hi banana have come across your posts a few times and am pleased you are writing this.

I'm gay...so already I've got an uphill struggle. We sourced a home donor, and tried for 6 cycles with him before trying with a second donor just in case we were "incompatible". We are now up to cycle 18 without a hint of a BFP.

We went to the GP after 12 cycles and were lucky to get referred for further tests. My FSH came back high for my age (32 at the time) so they did an AMH test which came back at 5. They then discharged me as they couldn't help me any further as my home arrangement couldn't be proved and we would have to pay for 6 cycles of DIUI to even be considered for NHS help.

They also said IVF would not increase my chances due to my low AMH and to keep trying at home.

So we are in limbo, how long can we keep our donor dangling on, will we ever afford IVF privately?

Some of the ridiculous things I've been told:

• can you try with a turkey baster?
• could you move to Scotland, they offer free IVF.
• could you use a surrogate?
• does your wife not want to carry?
• could you use an egg donor?
• have you thought about adoption?
• it will happen, it can take a straight couple up to 2 years.

-bangs head off a wall-

Do you also want me to paste this on your site as well? x

[Chattycat78]

Hi banana. I think this is brilliant. I’ve just read your article, and I think a perspective of this kind is really needed.

I also lurk a fair amount on these threads still- sometimes I answer if people have a question and I can help. I’d be more than happy to share my story but I guess it depends if you’d want to hear from people like me. I got the “happy ending” but it was by no means straightforward and has scarred me forever, and involved:

• low amh diagnosis/low chance of conceiving at 34.
  
• natural conception soon after ending in miscarriage
  
• ivf which yes by a miracle, (and despite doom and gloom opinions of medical staff) worked.
  
• later, a natural conception of twins which was a happy ending for one twin, but also involved a terrible decision and a termination of the second twin due to a very serious Megical diagnosis -(one in several hundred thousand chance) which then also put the healthy twin at risk.
  

I totally respect what you’re trying to do and please do let me know if you d like my story too. I totally understand if not.

[bananafish81]

Thanks Countess - yes I’m all about the anti-woo as well!

juney I’m so sorry to hear of your struggles, it’s just so, so shit. I would be absolutely honoured if you’d consider sharing your thoughts and experiences by filling in the (anonymous) questionnaire on the website

My apologies, as I’m embarrassed to realise that some of the wording of the questions may be framed in a heteronormative way - however I absolutely 100% want to represent all kinds of experiences, and have had responses from people who are going through treatment solo, as well as in same-sex relationships. There are some sections that are universal, and some that apply to specific situations (primary infertility, secondary infertility, treatment abroad, donor conception, adoption, surrogacy, parenting after infertility, moving on after finishing TTC) - so there should be something for everyone. Feel free to complete as much or as little as you like , skipping any questions or sections that don’t feel relevant to your experience

Each section can be saved individually (although unfortunately not each question), so you can come back to the questionnaire and complete it in bits (just skipping through any sections you’ve already done) if you prefer.

Chatty hi, I remember you from prev threads, how lovely of you to check in. Yes it would be an honour if you’d consider contributing also! The questionnaire is about understanding the emotional experience of infertility and / or pregnancy loss - regardless of whether that’s current or past, successful or not. Would be very much appreciated if you'd share yours also:

Questionnaire is here - uberbarrens.club/share

(there's one for the guys as well, if anyone has a male partner who'd be up for having their say as well - again, completely anonymous)

I’ve had over 140 responses so far, and the thing that’s most striking is that feeling alone is a pretty universal part of the experience - yet so many people are reporting exactly the same emotions. As lonely as it feels to be on this journey, we really, really aren’t alone

[EarlGreyT]

the thing that’s most striking is that feeling alone is a pretty universal part of the experience
I find that sad, but really interesting bananafish. I think the most alone I felt was when I went on a popular infertility website (hint: the second word of which is friends) and the almost universal attitude was of positivity. It all seemed to be about “thinking positive”, people excitedly talking about their cycles, people making cycle buddies and using language like “baby dust”, “sticky beans” and “BFP”. I felt that if anyone would understand, it would be people on a website dedicated to infertility and the fact that the experiences there seemed so far removed from my own made me feel more alone than anything as even people I thought should understand didn’t.