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MENTAL HEALTH

The second time around – Dealing with Secondary Infertility

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Confirming a secondary infertility diagnosis or feeling comfortable accepting an identity, can be as settling as it can be distressing. After weeks, months, sometimes years of confusion and uncertainty, to finally have confirmation of the box you belong in, can often be a huge relief.

You can seek the correct advice and treatment, you don’t have to worry about conditions you worried you might have and the confirmation brings to an end a horrid chapter when you’ve feared the unknown and felt gripped by uncertainty.

Realising I had secondary infertility and that my situation actually had a name, did exactly all of that for me. All I had known for all those years was that I wanted another baby. I searched Amazon for books about ‘struggling for a second child’ and ‘trying to extend the family’. I didn’t know the term to type into Google that might have pointed me in the right direction to find useful, specific information and secondary infertility support.

Dealing with secondary infertility

I was 38, happily married with a four year old son, boss of a marketing consultancy, been driven by my career all my life and I was desperate to provide a sibling. To others, I was seemingly happy, I had it all. My son was, and still is, the light of my life and after three years, having eventually conceived him with the help of Clomid, he had always been my dream come true. And yet, despite 15 months on Clomid and then three unsuccessful rounds of IVF, the heartache I carried at failing to conceive a second time was immense. It was often overwhelming.

Was I abnormal? Was it my fault? Was there something about me, my lifestyle, my habits, tastes, beliefs that meant I couldn’t conceive a second time? The truth is I’ll never know why. My secondary infertility, as with the first time, was unexplained. Nobody could tell me what it was about me that meant we were in this situation.

And yet, the confirmation that I wasn’t alone, that it wasn’t just me and that loads of other parents were struggling to provide a sibling too, so much so they’d given the condition a name, was actually hugely liberating! I might not have answers but I wasn’t abnormal and it wasn’t my fault. Whilst we might all be in the same boat, we secondary infertility sufferers are all different!

Different backgrounds, different lifestyles and so many different circumstances, yet the one thing we all have in common is that we are all blessed with a family but have a desire for another child.

The secondary infertility definition is commonly understood to be like my situation, where the couple have a child together, but for some reason or another can’t seem to conceive another child together.

However there are numerous profiles of couples struggling with fertility that I would strongly suggest should also fall into the ‘box’, ‘pigeon hole’, identity whatever you want to call it, that may not consider themselves as such.

For example, when a couple is struggling to conceive a second child, they are not eligible for funding for free fertility treatment as primary fertility sufferers are, because they have proved they can conceive successfully. This is irrespective of whether they required fertility treatment the first time round or not, even if they didn’t receive financial support the first time, they are still not eligible when struggling with secondary infertility on the NHS.

And yet, when either one or both, has a child with a previous partner, they too are not deemed eligible for funding for fertility treatment because they have also proved one or both can conceive successfully, even though this wasn’t together.

For some couples, those children from the previous relationship sometimes don’t even feature in the lives of their parents any more as contact is lost or few and far between for whatever reason. In other instances, those children are embraced by their Step Parents, loved and brought up as their own. In each case the couple understandably want to have a baby together, create their own little family but are seemingly denied the support or the recognition of having secondary infertility when I believe their circumstances show otherwise.

Another, often overlooked, profile is the couple that have more than one child. The most frequent retort when you have a child but say you are desperate for another is “Well count yourself lucky, at least you have little Johnny.”

There is very little understanding. When you already have 3 or 4 children and still feel desperate for more and dare to admit you feel sad that you can’t conceive again, the understanding from those around is pretty non-existent.

Irrespective of how many children you are blessed with, (and I’m sure you understand that you are indeed blessed if you are now struggling) you are entitled to feel the need or to want more and you deserve as much support as anyone else. You may be trying to conceive for your fifth baby but if you are struggling and seeking fertility treatment I would also include you in the secondary infertility statistics.

Women are having babies later, indeed putting off trying for children until later in life and more and more glass ceilings are getting shattered as girls are given more opportunities to excel in the workplace. At 38 I had been Marketing Director for a large PLC, ran my own marketing consultancy and felt I’d achieved many goals of the girl with big dreams, until I realised that all of that might have been at the ultimate expense of my actual biggest dream of being a Mummy to a large family. Here I was on the edge of the precipice at the big drop in egg quality and all that was now threatened. “You’ve left it too late” said some, “that’s why you can’t have more kids!”

In fact they were wrong. Firstly, even at 38, I always had bumper egg production and they were of the most excellent quality, but more importantly, secondary infertility can strike couples of any age. If a couple conceived a child in their late teens or early twenties, there is still every possibility that if they try for another, certain circumstances may dictate that they may not be as lucky second time round, whatever their age. Saying “But we’re still young!” may give them hope, but they should not put off seeking investigations or indeed fertility advice, no matter how young they think they are if they have been trying unsuccessfully for a sustained period.

The other area to consider when profiling secondary infertility sufferers is the World Health Organisation’s broad definition, which includes “all women unable to carry a pregnancy to live birth after a previous pregnancy”. They therefore include those women who have had repeat miscarriages, again a group who may be overlooked as to needing support through a secondary infertility support group.

And I guess whilst medically speaking, the circumstances are slightly different, I would also include some same sex couples in the category of Secondary Infertility where others may not. Why not? If either partner has naturally conceived in a previous relationship, or indeed if the couple have conceived through a donor or surrogate and they already have a family together, the fact that they may want to extend that family, to me, means they will still feel the same pain, longing, guilt and isolation of any other couple wanting another child.

We all like to feel part of something, to share love or interests with others and to have friends around us. Secondary Infertility is such a lonely world; one where you feel you can’t talk about your desires, your pain and your guilt, even to those closest to you. Thankfully more and more people are talking about the situation and so more people are recognising themselves and feeling they not only have an identity and a diagnosis, but also a friend.

It’s important that we all recognise that Secondary Infertility is still Infertility. It’s also important that we recognise that the profile of someone struggling with secondary infertility is not necessarily Mrs Married (to the same man), 40+ with a high flying banking career, high heels and shrivelled ovaries! Nor does she just have one child, just as she’s not necessarily straight, even married or most importantly seeking fertility treatment.

Not all those couples struggling to conceive a second child will contact a fertility clinic, seek advice or indeed access treatment. Their story will never be recorded and they more than most are probably oblivious to relevant support or information.

Figures on Secondary Infertility are scarce on the ground and any that do exist can only be wild guesses. Most fertility clinics don’t note if the cause of infertility is primary or secondary and whilst they may enquire as to the family background, this information is not recorded on any database.

Figures provided by fertility clinics will clearly be wide of the mark from figures generated by survey studies of the general population.

The pain at being unable to conceive is immense, it’s different but still unbearable if you already have one, two or many more children already. Whatever the couple’s circumstance or profile, wouldn’t it be great if we could hold back any judgement and instead extend support and understanding to anyone struggling to conceive?

Helen has struggled with Secondary Infertility for three years and runs the secondary infertility blog secondaryinfertilitymatters.com

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MENTAL HEALTH

The Invisible Wall

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The Invisible Wall

“Most relationships fail because we spend too much time pointing out each other’s mistakes and not enough time enjoy each other’s company.” – Unknown

Struggles through infertility can tend to take over your life. The constant stress of the treatments and the repeated disappointments can definitely strain the relationship between partners. Women may feel more irritable & emotional and her partner may feel helpless and worried. This makes for a difficult combination for any conversation to occur! Slowly there is an invisible wall starting to appear between the couple, emotions take over and make it even more difficult to talk.

With infertility, making a baby isn’t sexy. It isn’t fun. It’s stressful. It’s hard. It’s hormonal. It’s just miserable. The process truly is a make or break on relationships. Women can especially feel volatile just like a volcano about to blast at anytime with no warning. One minute you are positive, the next negative, becoming miserable, seemingly out of the blue. It can become exhausting for the partner quickly. The invisible wall gets thicker and taller… Sound and feel familiar?

Infertility can be an awful journey if the partners are not truly supporting and caring for each other. I have heard so many stories where partners are separating temporarily or permanently due to the stress and struggles with infertility. It doesn’t have to be that way!

Here are some tips to break the invisible wall…

1. To the woman who is in the thick of infertility, pay some attention to your partner. Ask them how they are doing. One of my clients asked her husband that very question on Father’s Day, and he broke down. Men also feel it, they just feel it differently.

2. To the woman struggling through this process, allow your man to be vulnerable. As a man, vulnerability with your partner doesn’t make you weak, it makes you even stronger. I have seen many relationships become very successful amidst the pain and struggles, when there is vulnerability between the couple. It strengthens your bond and makes you closer.

3. To both partners, when emotions are running high, remove yourself from the situation, take some time to collect yourself. Don’t talk or act when emotions are running high. The invisible wall gets higher when emotions are high.

4. Remind yourself and your partner frequently that “Together, we will make it thru this too”. Saying it out loud makes a world of difference and gives a great comfort to the other partner.

5. Get professional help, specifically someone who truly been there and understands the infertility struggle. They can help with tools and techniques to slowly eliminate relationship struggles, help identify the relationship goals and help you move forward positively in your life with or without successful fertility treatments.

Don’t let the invisible wall keep growing stronger and taller. Find ways to break the wall down slowly. Infertility shouldn’t be the reason for a relationship to break! Take small steps forward.

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MENTAL HEALTH

20 Things You Should Never Say To Someone Struggling With Infertility!

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“You may never know what someone is going through, but if you notice any signs of pain—hostility, negativity, or over-sensitivity—then odds are, you know how they feel. Respond to the pain instead of judging the signs.” Lori Deschene

I have unexplained infertility and my fertility journey was very long and painful with almost 8 years of failed treatments. I had 3 miscarriages, 3 IUI failures and 8 back to back IVF failures. It was an emotional roller coaster. I struggled in silence for the major part of my journey. I avoided talking to people with the fear that they will ask me about having kids. I avoided going to India (where all my family is) for 4 years in a row giving all sorts of bullshit (pardon my language here) reasons on why I can’t go. I wore a mask at work and never talked about anything personal. Talking to friends and family members was a nightmare especially who recently became pregnant or had a child!

I always avoid telling others about my infertility journey to avoid the comments that can really sting, let my blood pressure rise and bite my tongue, to put it mildly. There are sometimes where I wanted to react in a more animated fashion to those somewhat insensitive and ignorant comments.

This doesn’t just happen to me. It happens to many of us who are struggling with pregnancy loss, primary or secondary infertility. I recently put a question (What is that one thing that people say annoys you most about infertility?) to an online FB support group and its members had overwhelming response talking about their personal experience with these insensitive comments.

This list is based on my personal experiences and the collective experiences from many amazing souls going through fertility challenges including my wonderful fertility clients.

I am writing this to create awareness to those people who haven’t experienced infertility, who typically say things like this (many times with good intentions) to others going through infertility.

Here are 20 things NOT to ask/say people going through infertility:

  1. When are you going to have a baby? You are running out of time.
  2. Just relax, it will happen
  3. Drink a glass of Wine, it will happen
  4. Go on vacation, it will happen
  5. Stop trying, it will happen
  6. Lose weight
  7. You are young, you have plenty of time
  8. Do this, try this, it worked for, it will happen (Varies all the way from eating McDonald’s fries to using essential oils)
  9. For people with secondary infertility or have experienced losses before- You at least know you can get pregnant
  10. I know a bunch of ladies who’ve had babies in their 40’s! Don’t worry, it will happen
  11. To people with secondary infertility- At least you’ve got one, you’re so lucky, you might just have to be happy with one
  12. You are lucky you don’t have kids yet! (or) It’s so hard having so many kids
  13. You can have one of mine
  14. My husband looks at me and I get pregnant (or) I sneeze near my husband and I get pregnant
  15. Comments by a younger couple – We tried for a really long time( 2-3 months) to get pregnant, I understand your frustration
  16. Don’t worry, the technology is so good these days!
  17. Have you thought about adopting? it will kick-start your hormones and you’ll get pregnant. It happened to my (insert random relative)
  18. If God thought you were ready, you’d be pregnant.
  19. Maybe it’s just not meant to be (or) whatever is going to happen will happen.
  20. It’s not just the words, it’s the body language too- When people ask if I have children and I say, I do not, their reply almost always is, you never wanted kids?! With a surprised look on their face.

Even today at my nail salon, my manicurist asked me, how many kids, I said one(adopted). How old, 5 years. The next question immediately, you don’t want to have more???? You should have more..

This article is not intended to judge or blame those folks who say these comments. Many of you say these things out of good heart and well intentions. You all want to support and care for your loved one dearly.

Just keep in mind, these words can and will create a deeper wound to people going through fertility struggles. Because many of us are desperately seeking and doing whatever it takes to get and stay pregnant and yet it’s just not happening.

Unless you have experienced infertility, it’s hard to understand and relate to the pains and struggles all around. Infertility affects ones overall being- physically, mentally, emotionally and spiritually.

Here is one suggestion I will offer to people who are supporting a friend or a loved one.

Tell them, I may not truly understand what you are going through, but remember, I am here for you. And give them a big hug. Sometimes that’s all we need to feel better even a teeny tiny bit!

“Sometimes, what a person needs is not a brilliant mind that speaks, but a patient heart that listens.” Anonymous

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MENTAL HEALTH

Fertility Treatment Survival Skills

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Fertility Treatment Survival Skills

Practical and Emotional Top Tips from Iris Fertility Sherpa Natasha Canfer, Clients and Colleagues.

As the founder of Iris Fertility – an organisation offering bespoke practical and emotional support and companionship to individuals before, during and after fertility treatment – I am regularly asked what people can do to help manage the challenges that fertility treatment throws at them. Together with Iris Fertility clients and colleagues, I’ve put together our top tips, insights and nuggets of information.

  1. Put Yourself First Throughout the Process

Go gently, treat yourself kindly and say ‘no’ to people who are going to sap your emotional energy especially when treatment’s underway or you’re in the 2 Week Wait (2WW) – finding interest in or compassion for anyone else while you’re in the throes of fertility treatment can be challenging. Put activities on hold that you’re not interested in or can’t face. If you feel like you ‘should’ be doing something with someone then probably best to avoid! Be aware that how you feel day to day (and even within the day) is likely to change.

Don’t put off taking that first step – that might be going to your GP or going directly to a clinic for a Fertility MOT.

Don’t do too much of your own research – it can be mind boggling, confusing and cause anxiety.

Seeking the support of an individual or organisation (like Iris Fertility) who knows the process really helped us with having a sounding board away from the clinic environment. We could ask the questions we didn’t necessarily want to ask our clinic and raise concerns we weren’t able to share with friends and family. Don’t leave a niggle or a doubt unsaid.’ Loretta, Somerset

2. Trust Your Gut Feeling

Follow your instincts. Those instincts or your gut feeling might not appear to be logical but if something doesn’t feel right then it probably isn’t for you – even if you can’t pinpoint the reason.

3. Inform Yourself

Depending on your circumstances, appointments at fertility clinics can feel overwhelming. You might be presented with a lot of information and it can be difficult to take in exactly what’s being said and what that means for you – particularly if you’ve just received tests results that aren’t as you’d hoped. Also, a clinic may only give you information that’s specific to the services it offers rather than providing you with an overview of what might be available to you nationally and globally.

‘Don’t be afraid to ask questions – the doctors aren’t gods and they need to be challenged sometimes so that you know they’re doing the best for you as an individual.

Talk to people who have also been through this and don’t bottle things up especially through the 2 Week Wait.

Don’t be scared by the process. Embrace it but be careful as it can become addictive – trust your instincts when it comes to knowing whether you’re ready to say “enough is enough”.’ George, Ireland

Other sources to look into if you feel able are:

Progress Educational Trust (PET) – a UK-based charity which advances public understanding of science, law and ethics in the fields of human genetics, assisted reproduction, embryology and stem cell research: Progress Educational Trust

Human Fertilisation and Embryology Authority – the UK’s independent regulator of fertility treatment and research using human embryos. An expert organisation in the fertility sector and the first statutory body of its type in the world: www.hfea.gov.uk

‘Question, question, question your clinic about all the costs involved and its refund policy.

Ask your clinic about risks of failed fertilisation and unsuccessful thawing of frozen eggs and embryos.

If you opt to use a clinic abroad, check whether you can use a clinic of your choice in the UK alongside that overseas clinic or are you tied to one of their associated clinics?

If you go abroad, factor in how easy it is to arrange scans, blood tests, medication, intralipids, etc. Also work out whether you will easily be able to get flights and accommodation at short notice.

Is the clinic open at weekends and able to work around you?’ Sarah, West Yorkshire

4. Remind Yourself that it’s OK to be in a Different Emotional Place from Your Partner

Depending on your circumstances, it’s possible that you and your partner may want to choose different treatment options or you may find yourselves in a different emotional place from one another. That’s OK and totally understandable. Open and honest ongoing respectful communication with each other is important – and can also be exceptionally tricky especially when emotions and hormones are running high. If you feel that counselling would be beneficial then speak with your clinic about what they can offer you and when. Otherwise, you could locate a specialist infertility counsellor through BICA

Take the time you need.

Talk to your friends. If they are real friends they will want to lend an ear.

It’s OK to recalibrate your understanding of who you are if that’s necessary.’ James, Hertfordshire

5. It’s All About You: ‘Fertility Treatment’ is an Umbrella Term

Ensure that your clinic tailors all your treatment and medication to you and your needs.

6. Who’s Who? Clinic Staff

Make a friend among the clinic staff and ask them for their work contact details. It’s beneficial to have an ally or two on the ‘inside’.

If there’s a staff member who you have strong negative feelings towards for whatever reason and you would prefer them not to be involved in your care then let your clinic know. Most clinic staff work as part of a team and will try and accommodate patient requests of this nature.

I would’ve liked to have treated myself almost as if I was recovering from an illness – very gently. So do what makes you happy or at least calm. Go to places that make your heart sing and your fear retreat. See only those people who make you feel positive and with whom you can be completely yourself.’ Caitlin Allen Acupuncture, West Yorkshire

7. Statistics and Other Numbers are Only Part of the Picture

Perhaps easier said than done but try not to get too hung up on statistics and numbers. No one can say for definite how things are going to work out for you. Ultimately you need one egg, one sperm and one womb to get along with each other. If you’re comparing clinics then make sure you’re comparing like for like statistics. The figure you’ll probably be most interested in is the live birth rate for the female age group relevant to your situation.

8. Check Out Donor Conception Network

If you’re considering using donated eggs, sperm or embryos then check out Donor Conception Network (DCN) as soon as you can but preferably before you even start any treatment or become pregnant. Donor Conception Network is a charity and supportive network of more than 2,000 mainly UK-based families with children conceived with donated sperm, eggs or embryos; those considering or undergoing donor conception procedures; and donor conceived people. Staff, volunteers and network members have a wealth of knowledge, information and expertise about all things past and present in the world of donation including the possible impact of telling or not telling donor-conceived children about their genetic heritage: www.dcnetwork.org

‘If you wish to find the best possible fit with a surrogate mum, then Surrogacy UK is a great association to join. With their ‘friendship first’ ethos, get togethers are organised so that friendships can be formed before Teams are created.

Speaking as a two-time surrogate mother, I felt that finding the couple to team-up with was all about friendship chemistry. Being open, honest and approachable is a good way to connect with a potential surrogate. It may feel scary at first and you may feel exposed and vulnerable, but it works both ways. Imagine a year down the line when your surrogate/friend is about to birth your baby, she will be trusting you to hold that space for her, as the baby is delivered at long last in your arms.’ Jay Kelly, Surrogate, Baby Alchemy

9. Going Abroad – Is the Grass as Green as You Think?

If you’re thinking about going abroad for treatment, investigate what the implications of doing so could be for you and any future children. Here are just a handful of things to consider:

  • If your UK clinic is encouraging you to go to a particular overseas clinic then is it affiliated in some way to that clinic? If so, how and what does that mean for you and those clinics?
  • How is the overseas clinic regulated?
  • What’s the legal situation regarding types of fertility treatment in the country (or state) of your choosing?
  • Which screening tests are performed on patients and partners?
  • How much is it going to cost you financially, physically and emotionally especially by the time you’ve factored in flights and accommodation?
  • If you’re using a donor abroad then how are they screened and selected?
  • What are the anonymity rules in relation to donors and how would this impact on any child(ren) born from treatment?
  • How many families can a donor donate to and what could this mean in terms of the number of half siblings for your potential child?

10. DIY Donor Sperm – Future Proof Yourself

If you’re using donor sperm outside of a clinic environment then before you even start preparing for pregnancy ensure that your personal safety is paramount. Also, get legal advice regarding your specific situation and make sure you have legal agreements in place in relation to your particular circumstances.

11. Remember the Adult Child

While your focus may initially be on you becoming pregnant, your goal is to have a baby. That baby will hopefully grow to become an adult so when making decisions around the types of treatment you are willing to undertake, consider how your future (adult) child at different life stages could feel about any decisions you make and the impact of your choices on them.

12. Include Your Partner

It might feel that the spotlight is on the individual physically undergoing the fertility treatment so actively include (and encourage your clinic to include) your partner if you have one.

13. Changing Times

The nature of fertility treatment changes all the time so if it’s been taking you a while to get that baby into your arms you might begin to wonder if a particular treatment had been available to you earlier then whether life would have worked out differently. Be kind to yourself and remember that on your quest to become a parent you can only make your best decision with all the information you have available to you at the time the decision needs to be made.

14. Escape!

Develop a new hobby or skill in which you can immerse yourself and that can be done at any time regardless of the stage of treatment you’re at. Current favourites to distract clients are escape rooms, singing and learning a new language.

15. Funding

If you’re eligible to receive NHS funding but you’re not sure you want to have treatment in your allocated NHS fertility clinic then you could investigate the possibility of transferring your funding for use in a private fertility clinic.
If you’re not eligible to receive NHS funding or it’s not available in your area then speak to your clinic about any payment plans it might offer. You could also look into specialist fertility funding organisations which provide IVF refund schemes and multi-cycle programmes.

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