Male Infertility: An open letter to our past selves

The infertility space is dominated by the female voice. Whilst that is to be expected, I mean they do have the majority of tests, they have the majority of treatment if using IUI or IVF and if you are lucky enough to get what your heart desires then they have to carry the child for 9 months.

Does this mean that men don’t feel or have a right be heard?

Of course not! It’s just hard to get heard through all the noise.

As mine and Rachel’s infertility future unfurled I did a lot of soul searching, I did a lot of thinking and I tried to find support from men going through similar experiences.

What I found was that there is:

  • No charity in the UK dedicated to male infertility and supporting those experiencing its dark moments.
  • There is no specific male fertility face to face peer to peer support groups – that I could find.
  • There are almost no books written by men about their infertility from a personal perspective – they are almost all educational or factual books, which appeals to my logical side. But let’s face it infertility is not a logical pursuit!

I had to dig deeper into the tinterwebz to find my support and this came in the form of online support groups predominantly through Facebook and also through some friends that I realised once we opened up were going through a fertility journey of their own.

This is what inspired me to start up I Need IVF with my partner and how the journey to this article began.

I’m not going to go into the details of what male infertility is you can read about that in our other articles:

A complete guide to male infertility

Let’s talk about male infertility

What was the question we asked about male infertility?

Originally, I was going to explore this subject from my own perspective and the few men that I had managed to speak to about their own thoughts and feelings.

But I reflected upon this decision and decided that it would be doing male infertility a disservice by only presenting my thoughts and opinions about how male infertility and what men wish they’d have known sooner. But if you are interested then you can read about my perspective on an unsuccessful IVF cycle.

I concluded that this topic deserved to give a voice to those that may not be able to or choose not to speak publicly about their experiences. To that end, I wanted everyone I spoke to be able to speak freely by offering complete anonymity if those who have partaken wish to speak up in the comments then I’m happy to continue the discussions with you.

So, what was the process; firstly I sent those I already knew and had contacted me through the site a questionnaire about this and also spoke a to a few of them on the phone. Following the information, I realised that the majority of these were from the UK and whilst that is our primary audience we have many people read from all over the world so I widened the net and asked in male fertility support groups which I used myself as a source of support.

There was so much information that I gained from these discussions and questionnaires but the specific element we want to discuss in this article relates to one question:

______________

“what they would want to have told themselves if they could go back in time what piece of advice would they have given their previous self?”

______________

What are our aims with this question?

When writing a piece like this I try to imagine who would be reading this. I really hope that it’s an even split of

  • Men and Women – I want men to be able to understand they’re not alone and I want women to get a multifaceted perspective of male fertility
  • Those going through infertility and those who are early in trying to conceive – I want those already deep into their own fertility journey to understand how they feel is completely normal. For those who just starting or about to embark on the TTC journey to educate them about engaging regarding male fertility is not just important but vital.

Our aims are briefly mentioned above but we want to:-

  1. Help men express their fertility voice
  2. Help women understand a male perspective of infertility
  3. Encourage greater conversation
  4. Educate those not going through infertility the importance of thinking about it
  5. Reduce the feelings of guilt and loneliness associated with infertility

I’d really appreciate you informing me in the comments how you think we did and also please do ask any questions you may have about the content or your own personal situation and whether you think this kind of content adds value to your own infertility journeys.

What did men wish they could have told themselves about their infertility?

This is the main bulk of the article, I will only be posting one of the conversations in full, otherwise, this article would probably exceed 10,000 words and nobody has time for that.

Most of the discussion will be based upon the key threads that came from conversations backed up by snippets

Importance of being realistic

I’m going to start with James (not his real name) because I found this conversation powerful for a number of reasons, but I’ll let you read the unedited version (except for spelling a grammar) then you can come to your own conclusions

James:

  • Pray for the best but prepare for the worst
  • Be the strength your spouse needs. It’s ok to grieve, but not to the extent that they are consoling you. The loss is more personal for them.
  • If it doesn’t work, not nit-pick what caused it to go wrong, just move on and try again.
  • It’s an elective procedure so don’t just ride the coat tails of what the doctor says. (Example, we wanted to use 2 embryos, but the doctor said it would only increase the chance of success by 5% and wasn’t worth it. We listened. Wasn’t until later I found out that they must report their success rates to the national statistics and having 2 or more babies is considered a failure for them. They don’t care about your happiness. We are about to do a Frozen transfer in March, and have made it known we are using 2 this time; even though the Dr doesn’t recommend it)

Me:

“thanks for sharing. I think not dwelling on what went wrong is a really important one. I’m really interested in the mindset behind your comment “the loss is more personal for them” through our website we have spoken to a lot of couples about their journey and many talk of a shared grief, what is it that makes you say it’s more personal for them? I’m not saying I agree or disagree just trying to understand this thread of thought more deeply. If it’s too personal feel free not to respond. Thanks again”

James:

“I see it that way because my wife feels like she failed as a wife to have a child. We see hundreds of stories or really terrible parents doing terrible things to their kids. She questions why she can’t. Almost as if it was her job to grow it and she couldn’t. I know it wasn’t her fault, but I also know that to show her my pain would only increase hers. Terrible analogy but if you lost a limb, your spouse would feel grief but not as much as you, because it was part of you”

Me:

“thanks so much for expanding on it. I really do appreciate it; I know it can be hard opening up and exploring these things so I truly do thank you. I find the concept of ‘her feeling like it was her job to grow it and couldn’t’ coupled with failed as a wife to have a child powerful. I can empathise with this and I know that my partner’s feelings of grief and sadness stemmed from a similar place. Cheers for this buddy. Appreciated.”

James:

“it might also be due to being in the military. My mindset has become more mission oriented. If something goes wrong, we don’t dwell on the issue, we try and solve it first. I think once we have a child then all of the hardships, we had to get to that point will catch up with me. Please don’t think I didn’t have emotion. I cried with my father, I cried with my pastor, but around my wife I focused on the positives (we have 3 more embryos to try again, it’s not Gods timing yet). It’s been 8 years of this. We have moved a lot which has slowed the process down, we have become foster parents in (deleted location to keep anonymous) , but had to move the child to another home due to our military move. We are finishing the process of getting our license in (deleted location to keep anonymous) now and hopefully will have a foster by Christmas. It’s easier for us to focus on the positives.”

Me:

“Absolutely agree. I think our careers and backgrounds have a major influence on how we deal with things. I didn’t think that at all (about you not having emotion) I think its admirable that you stayed positive with your wife and it’s something that when I talk to men through our website or in face to face support we discuss a lot, because it’s important I just really wanted to understand your perspective on your comment which now I do thanks. I hope that with your final 3 embryos you get what you desire. That’s absolutely amazing that you foster! An incredibly challenging but rewarding thing to do. I would love to, but my partner thinks she’d find it too hard having to give them back. Hope the licensing goes well and you can bring some positivity to a child’s life around Christmas. All the best.”

Firstly, a big thanks to this person for sharing some of their thoughts and feelings.

What can we take away from this?

 

  1. Hope for the best, prepare for the worst – An important lesson. One key thing that has come up in many conversations is how long the journey to try and become parents is. Planning for the worst means knowing that it could take years, you may need IVF and then it’s not a miracle and this could take many many many cycles – or sadly not work EVER. – This is an area I think more awareness and education is vital
  2. Men feel very strongly but we often hide it to be a pillar for strength for our partners. – This doesn’t apply to everyone I am more of a heart on my sleeve kind of guy – However, there were many times in our own journey I wanted to cry but didn’t because Rachel was already hurting so much and I didn’t want to add to her grief.
  3. ‘The loss is more personal to women’ – I asked him to expand on this and he did a great job. I’m not sure that I still agree and if you suffer from severe male factor infertility or azoospermia, I think there would be a strong argument the other way. Another gent that I spoke to put it like this “right. So, your comment has to be put into context as to who has the issue, and then possibly overcoming it by taking it on as “our” issue.”
  4. Your upbringing, career and life experiences have a major impact upon how we deal with infertility and the continuously changing problems it throws at us. I think the important take away is that you deal with things that feel right to you; by doing this you reduce the overall stress of the situation.

Becoming overwhelmed is a real possibility

What do all these peoples comments have in common

“Expect it to be a bumpy road, and make sure you are set up with a good therapist. You will most likely end up needing his help.”

“It’s a dark and long road, one which demands you to look at yourself and be honest about what you want – it’s not for the light-hearted”

“It is ok to cry, get it all out, don’t keep it in. Therapy helps.”

“You are not the only person going through this – reach out when needed for support and perspective.”

I think the key points that come from these are:

 

  1. Expect the journey to be long and painful – Don’t underestimate how much of a mental toll the infertility journey will have on you as a man – this is especially true for point 2 of the above section; it takes emotional resilience to continue to be strong. That resilience will be tested.
  2. Get a solid support system around you including professional help – Out of all the people that I spoke to over 70% said they wish they had got counselling sooner.

Lack of education and social taboo are preventing earlier engagement

What do I mean by this; in schools, college, university and through our experience we are taught the biology of reproduction, we see families and babies everywhere.

Our education and experience don’t tell us that having children can be difficult.

1 in 7 couples struggle with fertility. So why is it not discussed more? I think infertility can feel like being part of a cult – where the ‘normal’ world is interested in what’s going on behind the veil but ultimately shuns it.

When you take the above and add it to the fact that people as a generalisation are waiting till later to start their families this can exacerbate the fertility problem.

This is something that I have felt passionate about for a long time, so I was pleased to see it come out through people’s comments.

“1000000% would have wanted to find out at a younger age that i was infertile. Would have had a different outlook on life and maybe more motivated to find out if there was anything I could do about it.”

“I think men should be tested younger and we don’t really think about it until we’re trying to have babies.”

“I’ve also done some work with someone in my religious community to increase awareness of male infertility within Muslims but would love to expand that to the whole community… for so long it’s been a taboo subject in our religious community. Many men / women haven’t come forward (my wife and I can’t be the only ones). But now with mental health at the forefront of everyone’s mind – its showing that physical health is being attributed to playing a key role in everyone’s mental health. So now we have this situation where people are coming out a bit more. The work I’ve done is just to talk about my experience and want more people to listen to it and be okay with it. There’s nothing I can do so need to be more positive about life.”

“I would tell me and my partner to get ourselves checked out, health-wise, earlier. We’re all taught at school about the risks of getting pregnant too early in life, but nothing much is said about leaving it too late – only to discover that you have problems.”

 “As others have commented. If my partner and I had known our fertility statuses earlier in life, we could have made some proactive decisions rather than face the shock and pain of realising that we have left it too late.”

“If we had had the option of getting a sperm test and an AMH test at between 28 – 32. With guidance, we could have engaged earlier with the resources we needed.”

As you can tell there was a lot on this subject, in fact, I could have added another 10. What comes across clearly from the many discussions is the disappointment about the lack of education and engagement when it comes to male and female infertility. These discussions can then be further discouraged by religious or societal conformity

So what are the key points to take?

  1. Education about Fertility – This should start at schools and be part of ongoing adult and community education.
  2. The cult-like status of infertility needs to be broken
  3. This is a personal one, but I am a firm advocate of a basic suite of fertility tests for men and women to be offered at a specific age, maybe 25. These would be a SA for men and bloods and a scan for women. This should be similar to a smear test or blood pressure check, where you get a letter around your birthday from your Dr Telling you that you should have these tests, here’s the reason and benefits of you doing so and then letting you choose. People can then engage further.
  4. Age of finding out does have serious implications for those suffering from infertility so action needs to be taken.

An identity crisis

This is one that I hadn’t really considered myself. But I spoke to a few men where this was huge for them.

I spoke to one gent called Simon (not his real name). He suffers from complete non blockage related azoospermia which means that he and his partner only have the option of using donor sperm he says that for the longest time this has ‘defined him’

“I hate that I don’t create sperm, I don’t feel like a real man. I want to have a baby which is mine that is part of me. It makes me so sad that I put my partner through a year of IUI and now 3 cycles of IVF all because I can’t do what all other men can.”

“She is so desperate for children that I agreed to use a sperm donor, but I am scared that now she is pregnant that this child will never really be mine”

When I was talking to Simon this discussion nearly caused me to cry, I could feel his pain, I could see the tears draining from his eyes. His pain was real, it was visceral. It fucking hurts to see a person be defined by something that is out of their control. It was at this moment that I really felt that infertility is an indiscriminate destroyer of identity.

This conversation was the one that made me realise how big of a problem for men and almost certainly women this can be. Others said.

“First and only one: Don’t let your fertility define who you are, the second you do is when the mental doubts and anxiety kick in”

There were a few responses to this comment which included

“I think I sailed on that boat a while ago 😔 hopefully I jump off and swim soonish!”

“love this. Totally correct. We’re all MEN at the end of the day.”

“Yeah, I had the problem, got involved in a lot of high profile media when going through the start of our journey. Taken a break from it and we are just being us, it’s made things a million times easier.”

So, what can we take from this section?

 

  1. Infertility shouldn’t but can define who we are – We need to actively fight against this and make sure that our lives are fulfilling through other avenues
  2. When the problem is with you; guilt is sometimes worse than grief
  3. Societal expectations that we can create and should produce children is a powerful driver of our identity.

Treatment or Cure

Some causes of infertility have a cure but overall infertility itself can’t be cured. Many couples go through their fertility testing their IUI waiting to get to IVF – They assume that this is the cure to all their problems. It’s not.

Whilst for some IVF will bring them the thing their heart desires most, for many more, it’s just another disappointing step in the process – It’s not a miracle cure.

IVF has a 10% – 40% of working per cycle, this means that most people will need multiple cycles in order to get pregnant.

I read an interesting statement on Twitter about the choice to not have children through the infertility journey. It was arguing that people chose; it didn’t consider circumstance. Your choice may not have been a choice but an enforced decision because of the cost, your physical or mental health or it just took too long and now it’s not possible to have biological children. Is this a choice – I’d argue not.

Families can be created in many different ways and biologically is just one a couple of quotes I found from Dr’s are

“True professionals provide considered advice. And sometimes doing nothing is exactly the right thing to do. The same is true of medicine. Recognize that the doctor who advises no action may be the one who really cares for you.”

— DR. GILBERT H. WELCH

This one is so true regarding the medical side of infertility at times we have to say enough and with the strange power dynamic that exists between Dr and Patient the power in saying I don’t think we should continue can be the news we needed to hear. This is backed up by what some of the men I spoke to said:

IVF does not guarantee results.”

“More often than not IVF does not work in the end”

“Do not be afraid to stop and get off the rollercoaster of IVF, there are other options such as fostering and adoption.”

“IVF was just another step we had to take to meet our daughter – who we adopted”

“My wife and I went through 10 years of fertility treatments – after this, we choose to live our lives childless. We now define our existence through travel, friends and love. Looking back I just wish we had reached this decision sooner.”

I don’t think we need to say more other than I saw this wonderful tweet from a Dr. on twitter that I had to share as it felt ‘right’ for this section

“Helping build families is a privilege.

Families come in all different forms – birth, donation, adoption, mentoring, and friendship but all built on a foundation of love.

I am grateful to be a part of the process”

— DR. LORA SHAHINE

Key points

 

  1. IVF is not a miracle cure – It is a step in the medical side of the infertility process. When you decide to stop this is not the end of your options for becoming parents and starting a family.
  2. Choosing a life without children is the right choice for some only you can make that choice.
  3. The medical side of infertility represents just a small slither of the overall journey and as one man put it ‘don’t be afraid to get off the rollercoaster”

Closing thoughts

A massive thank you to everybody who took the time to speak to me either online, face to face or over the phone.

I hope that you think this article has some value to it and that it made you think a little more about infertility in general but also male infertility. Remember every one of these comments was from a man who has gone through or is in the process of going through infertility.

It was amazing to have discussions with each and every one of them, some of them moved me to tears and some made me chuckle – The discussions are like everything in infertility they represent a strange but real dichotomy from extreme joy to the deepest grief.

If after reading this article any men or women are interested in sharing their story you can get in touch with us either via the comments or email us at info@indeedivf.co.uk

We’d love to hear it and help you use your voice to empower people through their own journeys.

Thanks for reading if you got this far – it was a beast.

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