Can we talk about IVF?

Updated: Apr 1

ANOTHER MOTHER

We are in a world where employers and managers tip toe around the issue of procreation. Last weeks post brought to light the issues around discussing pregnancy in an appropriate way, ultimately to engender a positive and respectful culture, an engaged and loyal workforce who know they, and their families matter. After last Wednesday's post, two completely unrelated people made contact to share their stories. Wonderfully, one was a man, and one was a woman. Both have experienced first hand the pain and trauma of IVF from a variety of perspectives, emotional, psychological, physical, social and within their careers. However difficult talking to your boss about pregnancy is, talking about IVF, takes things to the next level.


The perception is that firstly, as a couple, you will both want and be able to have children. So those pitter patter of tiny feet questions, although well meaning are presumptive and painful. Secondly, sharing your IVF journey with your employer requires trust and empathy, tolerance and flexibility on their part. For busy, pressurised people, that's a big ask. But the statistics of those undergoing treatment are alarming, a product of the lives we live, the demands of our careers and the shortcomings of our fragile biologies. Some women choose to take this route as a single parent, a tough and lonely haul even with a designated IVF partner. But when there is a partner, regardless of gender, other pressures come to bear on them, a powerlessness on one hand and the duty to be powerful on the other. Pat got in touch with us to share his story, now ten years old but as fresh as the moment it happened. We spoke to Pat during lockdown, in his busy home with three children. The second and third pregnancies did not require IVF treatment. Pat has kindly offered to make himself available as a listening ear to anyone who relates to his story and needs support. Please contact us and and we will connect you.



PAT'S STORY - THE MALE PERSPECTIVE

When it comes to the discussion about IVF, the male perspective is often overlooked.  I watched the recent TV show about surrogacy and it brought it all back home.  The men in the show really took the back seat and they were more in a supporting role throughout the process. They were the door holders, the jacket carriers. It only after it's all over that you being to process what just happened to you. At the time, you're so focussed on the goal that that's all that you can see. Suddenly, you take a breath, and you say, Wow, that was something else!

I am absolutely not downplaying the stress and physical pain that females go through and its not a competition between male and female. But I do think males should be looked after more.


It's ten years since we went through the process and thank God I now have three children.  However I still went through it and I haven't forgotten the rollercoaster that it was. I've though a lot about this and it has really helped to organise my thoughts and write them down.


THE BLAME GAME

Our problems were unexplained, science couldn't help us to understand why we couldn't have children but I think that it is a huge unspoken issue.  If it is a problem on the male side, the pressure and guilt is enormous.  The female my not blame their partner but I am sure that the partner feels the guilt and pain of having let their partner down.


THE BRAVE FACE

As men we don't go through the physical process.  In my case I felt I had to put on the brave face. I often became the spokesman for us, I was left to speak to the wider family with updates, good and bad.


MEN ARE CLUELESS

As a man I was not very educated on fertility etc.  Now I'm not taking about biology but males really don't know as much about fertility and pregnancy as women do.  We were 30 when we started this journey.  To be honest I thought that my wife was panicking a bit and like everything now a days (I want it now!) but I was wrong.  My wife was totally right to be panicked.  


It was only when I went into a room full of couples in The Rotunda Hospital in the same circumstances did I realise that they were all relatively young and just like us. The amount of people was incredible. I expected people in their forties but I was so wrong.  Women have maternal instincts that males just don't.


THE MEANING OF LIFE

I remember being told that our infertility was unexplained and that was that.  I came home to our new four bed house ( we moved in anticipation of having a family).  It all felt so pointless. We both had college educations we had done well financially but then I looked around and thought what is the point of it all if we don't have children.  Sorry if that sounds like a boast but its not.  As a man I had just assumed that I would have a family.  I never realised that my life goal was to have a family and that was what I was working toward unknowingly, Its only when I was told that that would not happen it became apparent and that was horrendous.


BEING STRONG.

My role in the process was to stay strong and optimistic.  As  a man, in my head, I needed to stay strong whilst my wife fell apart. During the up cycles and down cycles of the process, my wife was extremely tired, it would come on her rapidly and she was incapable of performing, in her high powered job, to her previous ability. It was so hard for me to watch her go through that in silence, not being able to share what was wrong and get support.


OUTSIDE PRESSURES

I had experienced family pressure and small remarks from family and friends about "any news" and the "patter on tiny feet" which took its toll. I, again as spokesman, was given the job of telling people to back off which wasn't nice.

It took us two rounds of IVF to get pregnant, and over the course of both, we had two very different communications strategies.

On our first round we were successful but unfortunately we lost the the baby.  Stupidly (In my opinion) we told everyone that we were having a baby. We then had to tell everyone that we lost the baby generally after they had finished congratulating us!!.

We went again but told nobody.  This was really tough as IVF is logistically very complicated.  I had to make excuses to leave work early, cancel family events etc etc. Lies must be fed on more lies.

Anyway we got their in the end.  I work with a lot of younger people.  I take every opportunity to talk about our journey as I know that in almost every room there is somebody who can relate. I also put it out there that if any of the lads want to chat to me about it I am here.  Women tend to have their girls to speak to but guys are guys.


Society has changed. Generally we start work, settle down and enjoy life and around mid to late 30's think about having a family. Unfortunately nature doesn't really like this time table.

I didn't anticipate all of this pouring out. It was ten years ago but still very fresh in my mind!


SIX TIPS FROM


  1. Ask for help and get educated about the process.

  2. There are two of you in this - you're not just the coat carrier.

  3. Don't underestimate the toll the process takes on both of you.

  4. Consider the consequences of your communications strategy.

  5. Be mentally prepared to be agile - the process respects no structure.

  6. Have someone else to talk to, someone to let you vent.


ANOTHER MOTHER

It's worth asking a this point, before we move onto the other side of the story, which world we want to live in, one where share their stories with loved ones for fear of insensitive behaviour? Or one where people know what the right behaviour is, are reflective enough to think before they speak and can offer support rather than additional stress and pressure?


ELLEN'S STORY - EARLY PERCEPTIONS OF MOTHERHOOD

When I was a young girl, I wasn’t interested in playing with dolls. What was the point in playing house when life was about ‘so much more than that’. I wanted to be a proud, independent, imaginative woman, someone who wasn’t tied down by societies’ conventions and stereotypes... Little did I know being a mother would be all I’d ever want one day.


I was born the youngest of six children, by six years; the eldest being fifteen years older than me. From an early age, I witnessed my siblings ticking life’s boxes ahead of me. It seemed inevitable that that I would follow suit; study, become a professional, travel, marry and finally settle down to have kids. I had always loved kids. It was just about when to have them, and hopefully not at the detriment of my own happiness, life experiences and choices.

I experienced a difficult time in my late teens, but my youthful pride stayed with me as I rolled through my twenties. I met my husband, the love of my life, and based on the experience of an older sibling, consistently feared the affect that children would have on my own career. My aim was to have as many life experiences before ‘settling down’ as I could. I worked hard to have different and varied professional experiences. I enjoyed meals and drinks with friends, took up plenty of hobbies and travelled whenever I could. I finished my twenties with three amazing years living overseas. In 2016 I married my husband before moving back home to Ireland shortly after.

I loved my twenties; I turned thirty happy, proud and confident in myself. My husband and I had a solid plan for life and most things were working out.

Back in Ireland, I was eager to make that final push in my career before having kids. My husband had set up his own business and was experiencing an adventure of his own. Our life was all about looking back without regrets. We knew some things would change once kids came into the picture. We wanted to be responsible and provide the necessary security in our lives before we made that final step.

‘TRYING’

We started trying for a baby in June 2018, when I had just turned 32. My husband had been broody for about a year at that stage, so we made a compromise and started trying a few months earlier than I originally felt ready for. The first six months of trying I was in an incredibly busy job. I was still living without regrets and not putting any limitations on myself. I had never considered I might not be able to conceive and I had never contemplated a life without children, so I thought it would just be a matter of time. For the first few months, I always thought this was the month and then I would be disappointed that it wasn’t, but I told myself to have optimism.


After six months I reached a stage of burnout and exhaustion in my new role on a stressful and demanding project. I decided I was probably far too career orientated and that I needed to change my attitude. I thought the right thing to do was to focus on having kids and forget about my other dreams; I hoped the stress would be eased and that I would get pregnant with a little TLC and a less stressful existence.

I spent much of 2019 waiting. I tried to track my ovulation, took my folic acid and worked on cultivating patience. I did acupuncture to support my fertility, took herbal remedies, continued to do meditation and practice yoga. After 10 months of trying my husband contacted a friend of his, who was a GP and he suggested a GP colleague with specialism in fertility local to us in Dublin. The doctor was so understanding of our struggles and we were relieved to finally have found someone who understood the seriousness our situation. She recommended doing some tests to be proactive; I got bloods done at a number of points over my cycle and when (much to my relief) they didn’t showing any issues, my husband had his tests. At that point our world had already turned upside down as we never thought it would come to this for us.


INVESTIGATIONS

It was excruciating waiting for the results. The initial investigations dragged out over three months in total. Any negative test result would have been crushing and – let’s face it - would have potentially derailed the course of our lives forever. I went into work pretending like everything was okay. I was putting on a brave face whilst privately trying to chase up doctors and slip out for tests; I feared my colleagues and manager would think I was less dedicated in my job and I knew I was a lot more distracted and anxious than usual.


As the stress and strain of trying built-up, I found myself changing. Constant failures month-on-month cumulated; and every month more and more of my hope and optimism slipped away. With increasing pain, every month represented a new and further loss or reduction. The same year in 2019 we also lost my husband’s grandmother, a close family member needed support through a major crisis, my dad suffered a mild stroke and we were going through the more understandable stresses of purchasing a house. My anxiety (manifesting in my situation as mainly social) went through the roof. I started to imagine my life without children and struggled to see what else there would be to look forward to in my future.


During the initial investigations, after much research, we started to see a specialised fertility councillor. I had heard the stories of marriages breaking up or coming under strain through fertility challenges and a number of members of my immediate and extended family had suffered profoundly with their wellbeing after periods of trying for children and miscarriage; I wanted to remove this risk. IVF was something I had dreaded since the beginning and really was my biggest fear at the start of my fertility journey; I doubted whether I could handle it.


I told the counsellor about my grief. I had not known grief creates a wave of emotions that changes every day. I learnt that grief is like a whirlpool; constantly getting stimulated, churned and triggered from your surroundings and the interactions within your day-to-day environment. At the beginning you don’t know what the grief is. It’s always changing and each stage needs to be felt and processed, however with infertility you’re grief is non-linear and unseen; you are grieving each cycle, your rising hope and plummeting loss within each month; you are grieving the loss in your normal journey to parenthood and the change in your overall sense of self at the same time. You grieve for a child you never had and that grief is silent and unseen. The waves and mix of emotions caused can be overwhelming and don’t come in predictable timeframes or in predictable ways. There were periods when the sound of children playing outside the house on the road hurt my ears and seeing images of babies still cause me distress at the moment some days.


I went for further tests, this time much more invasive (a transvaginal ultrasound, a hysterosalpingography, and some further bloods). I sobbed silently through the transvaginal ultrasound at the fertility clinic. I did the hysterosalpingography in a maternity hospital, the day after my dad suffered his stroke. With lots going on, I took a sick day (guiltily) from work and with less day-to-day pressure, felt calmer and didn’t show much emotion at the scan. After the scan the nurse (a total stranger) asked me ‘how the anxiety was?’ When I said I was doing okay, she told me ‘I was very stoic’. I told her I cried at the last scan. It’s all about the moment you catch someone in.

THE PROCESS

After months of emotional and mental preparation we started our IVF cycle in mid January after 18 months of trying for a child and a mountain of pain. In order to mentally prepare ourselves we continued to visit the counsellor, went to some support groups provided at our fertility clinic and I decided (bravely) to tell my employer what was happening. My manager and HR tried to be supportive but didn’t really understand. They both said ‘congratulations’ when I told them; it made me think of the societal perceptions of IVF and how many people perceive it as a quick-fix. Although not an entirely unsupportive reaction, this didn’t reflect the pain of my journey up until that point, didn’t reflect the odds of success of the treatment (odds for even ‘young and healthy’ patients without diagnosed complications) or the immense torture and stress of experiencing IVF. As someone who had always believed having children would derail my career, mainly through hearing many stories of discrimination against women through the years, I was very cautious of a bad reaction from my manager. To expose myself before taking maternity leave was a huge risk and something that in my 20s would have been unimaginable, but my job was very unpredictable, unstable and deadline-driven so I thought this was the most appropriate and most responsible option. Following an explanatory email, I sat down with my busy manager. Tight on time and stressed, she impatiently asked me for a ‘list’ of things I needed; she needed to solve the problem after all. But without having ever done IVF I found myself speechless and ‘wasting her time’. When I opened up and told her the experience of IVF was an isolating experience she scowled at me. With my work location being ‘fluid’, I told her at least the clinic was close to the office so that would help to juggle things in terms of managing my time and stress levels; she also scowled at me when I said this. The next week we sat down for an annual performance review; she said she thought I was the type of person who didn’t want to take on a new challenge. As a busy manager or 80 people, she had obviously already forgotten our conversation. Did she remember I was doing IVF? With my self-belief and confidence torn and shaken and no words to explain the gravity or magnitude of my situation, I unfortunately accepted her insult, entertained the image of not being open to new experiences; I know she would not have had this opinion the year before.


We had our pre IVF appointment and it wasn’t as bad as I thought; it was great to talk through the medications with the nurse and run through how to inject. The nurse put the instructions in my bag as opposed to handing them to me as I was too overwhelmed and was getting used to it all in my own time. Christmas rolled by and we had family to the new house on Christmas Day and spent it with our new puppy. I bravely went to the pharmacy on my own and came back with my bags of syringes and tablets with varying names, and put them in the fridge; I had feared that act for about 6 months and thought about it so many times. I used the two-week Christmas break to unwind and prepare. I searched the internet to find out how much time I needed to take over treatment. I was still thinking about my managers requested ‘list’ and also my own wellbeing. I was met with unrealistic articles of people injecting themselves in work toilets as corporate robots and found no real further clarity in terms of work allowances or adjustments. How could you possibly get your dosage and timing correct doing this? What if you missed it, were late, messed it up (very easy to do) and ruined your entire cycle (emotion, time and money; both you and your partners). To get more clarity, I called the clinic and found out they only provided a note for the physical aspects of the treatment; 3 days in total. There was no allowance provided for the mental and emotional aspects of the process. It’s possible they didn’t want people to lose their jobs and not be able to pay for treatment plus some people found the distraction helped; I guess it depended on what you did and where you worked and providing career advice was not a medics job. Despite my best efforts at work, I was put on yet another understaffed, chaotic project and after all attempts at managing my wellbeing before the treatment, I was having sleepless nights with stress and following months of cumulative grief through the journey, I was burnt-out. I also knew the treatment outcome would be affected if I stayed at work and wasn’t sleeping Like always I didn’t want to look back with regrets, so I went to my GP and much to my shame I signed myself off for the duration of the treatment. I hid this from my immediate family and acted like I was still at work; my husband’s family were a great support.


I attended the first scan and it was an incredible relief when I got the all clear to start from the nurses (no cysts – I had heard they can unexpectedly hold up people for months!). The first injection hurt a little but wasn’t as bad as I thought it could have been. My husband organised the doses and medication and that really helped. As the days continued, the injections got less and less painful but the grimness, the steeliness increased. Prisoners to the clock, we silently waited until 7.45pm each evening (similar to checking your boarding pass before a flight that you can’t miss). It added up and when the morning injections were introduced it started to feel a bit constant and trapping. There were some days when I felt nauseous in the morning and needed to lye down but all in all, I counted myself lucky that I wasn’t more affected by the hormones and there was only minor bloating as my ovaries started to swell and develop a year’s worth of eggs. At the second scan everything looked great; despite feeling barely anything my body, was responding really well to the hormones. A few days later and back in the clinic for the 3rd monitoring scan and our world came crashing down all over again. There was a risk that my body was responding too well to the treatments and I was falling into the category of Ovarian Hyperstimulation Syndrome (OHSS). OHSS effects 5% of IVF patients and can be life threatening, and certainly is not a good way to move into a pregnancy as it puts the mother’s life at risk. It looked like we couldn’t complete the cycle and we would have to freeze any embryos that were formed. We are distraught but tried to stay positive; it could all change again tomorrow. A call in the afternoon from the nurse, means we need to go back for a monitoring scan the following day. One day at a time; it had been the mantra of infertility all along. The scan the next day was even worse. It may not be possible to complete the cycle at all. It has gone from bad to worse; now yesterday’s news was good news. That’s the unpredictability of IVF. A call from the nurse that afternoon confirmed that it was to be egg collection and then frozen embryos (the least worst outcome).


The egg collection was terrible, a genuinely traumatic experience. I was put to sleep in a theatre and when I woke back up I cried, disorientated, and half asleep, told my husband how much I loved him as the nurse walked me back. I was exhausted. My stomach was so bloated that morning I could barely walk. A day or two after the egg collection, I had crippling cramps and had to call the hospital in the middle of the night as I knew OHSS could be fatal and I didn’t want to take any risks. We got 11 eggs in total, and 9 fertilised. On day 3, eight of our embryos survived but then I found out that only one embryo was of sufficient quality to freeze. I hadn’t even been aware that was an issue. On day 5, the embryologist told me six of the embryos had not survived (which means they had been disposed of) and one had been frozen. I asked her what she had done with the embryos, had she washed them down the sink and then stopped… Not worth thinking about. On Day 6 the final embryo had gone. One frozen embryo from my 11 eggs. My husband and I felt we needed to take the time to mourn the existence of these little lives, however brief. We took a bunch of flowers down to a local stream and let go of a flower wash away for each little life that might have existed.


The process left me worn out and exhausted. As I took the next set of hormones (this time oral tablets), I started to notice the affect of the hormones on my wellbeing, stress level and mental state. With my treatment dragged out and still ongoing, I sent my manager a business case for infertility (which took great lengths to find) and agreed to a sabbatical from work.


Our treatments to implant our frozen embryo were meant to start back this month; it would have been a three month cycle in total. Unfortunately with the Corona virus and it’s related knock-on effects, our treatment completion has been delayed indefinitely. It is not clear how much longer we will have to wait. I am currently not working and am not sure what I am supposed to do there. Following an initial successful scan and more medication, our life is further put on hold without closure on the success of our first IVF cycle. Like many others with fertility issues we remain in limbo. People try to be positive but this is our new normal. We remain in the in-between; with an embryo in the freezer (again not worth thinking about), love in our hearts and a will to continue this somewhat cruel, unforgiving game. Who knows what the future will bring but we continue to choose optimism and be grateful for everything we have and find meaning from the challenges life invariably throws at us.


An understanding and supportive employer makes all the difference to an employee during fertility treatment and fertility issues, however as such a complex issue this isn’t always easy. It has taken an immense amount of research on my part to get to this stage and successfully navigate my situation. Fertility affects one in six people in UK (3.5 million people), and one in four in Ireland, so I would imagine there are other employees dealing with a similar set of challenging circumstances. As a sensitive, personal and complicated topic, it can be very difficult for an employee (male or female) to bring up and adequately and confidently explain with an employer or manager. Many people won’t be able to understand fertility and all of it’s intricacies (unless you have been through it or someone close to you has) and even then, each case is unique and different, so there will be things any one person doesn’t know.

In my opinion, there are key areas on where employees could be better assisted:

  • Promote an environment where everyone can talk about it.

  • Promote Education/Support to assist employer better understand the needs of someone having treatment.

  • Introduce workshops and trainings for managers and link in with Mental Health / Wellbeing Programme.

  • Provide written information pack/starting point for managers to assist them.

  • Introduce good, comprehensive fertility policy and link with other flexible policy.

  • Provide guidelines supporting employees so don’t have to navigate in the middle of their treatment which is very burdensome.

  • Highlight EAP.

  • Find a Fertility Champion: Find someone in organisation who has been through it before to support staff.


Benefits:


  • Championing diversity, inclusion and belonging.

  • Supporting employees mental health and wellbeing.

  • The more communication and flexibility available, the less disruption there will be.

  • Supports and promotes a family friendly workplace.


Fertility Network UK are the UK’s leading patient-focused fertility charity are working hard to promote fertility issues. Through their ‘Fertility in the Workplace’ initiative they offer free Lunch and Learns, Fertility Policy Consultation and also half day training sessions for employers and managers to gain an in depth understanding of the reality of fertility treatment and the impact thereof. No similar charity/advocating body in Ireland yet but available if employer has a UK base or presence.


If you are an employer or manager affected by these issues, IBEC have a maternity and parenting toolkit opening available online here.


If you have a question or problem that you would like help with, please hit the request solution button and we'll find people who can help. If you know someone who might benefit from this advice, please do share ANOTHER MOTHER with them.






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