Part Four of My Story… it’s the fun part?

PART FOUR of my story (Read Part One, Two & Three of my story)

Infertility is not a bad word!! You don’t need to do this alone. You’re not alone. I share my story to help break the silence, to give insight to others of this horrible and heartbreaking journey. To give strength.

Please feel free to share your story too, your feelings, or just to vent. I’m happy to answer questions about any part of my journey too. Even if it’s not for you, but for a friend who might be struggling to conceive and you want to help xxx

It’s the end of a very long 2 weeks.. and i’m so tired, my tired is tired! But I can’t sleep because the cocktail of medication is causing insomnia ๐Ÿ˜ฆ argh!

My last 2 weeks looked something like this:

โ€ข 2 hospital visits for 2 very painful (and humiliating) procedures

โ€ข 26 injections in my tummy

โ€ข 9 blood tests (all at once)

โ€ข 10 new steroid tablets

โ€ข and diagnosed with an autoimmune disease

I’m exhausted, and shattered inside. Yesterday I broke, for the first time since I started this journey 3 and a half years ago, I lost hope. I wanted to give up.

Yesterday I spent the day in hospital. A weekly occurrence these days.

Lying on a bed in theatre, surrounded by 3 nurses and 1 doctor. Wearing a horrible white hospital gown, naked from the waist down and my legs up  in strirrups.. waiting to be poked and prodded with this next procedure. I sobbed. A moment came where I felt like yelling, that’s it.. I can’t do it. I’m done. The universe won. i don’t want to be a mum, I can’t do it. I wanted to jump up, put my clothes back on, get in the car and just drive away.. but I didn’t. I lay there, quietly sobbing while a nurse rubbed my arm and told me to take deep breathes. She told me I was strong, I loved her for that. And I gave her a big hug after. I needed to hear that.

It hurt. Oh my, did it hurt. I was having a HSG tubal patency test. There were inserting a catheter into my uterus, inflating a balloon, and then injecting an iodine dye solution. The iodine would travel through my Fallopian tubes (just like an egg and sperm would travel) as an X-ray machine hovers above clicking away to watch for any blockages.

The pain is intense, so sharp and it comes on so abruptly and strong. I wasn’t prepared. I’m told that not everyone gets such intense pain, that it’s most likely because my period pain is bad. Just my luck, I thought.

I think it was the exhaustion that made it worse. I’m strong, I’ve never known how strong I was still I started this journey.. but I was exhausted. I didn’t want to be subjected to more pain again, I didn’t want more bad news.  I didn’t want to be on public display. And I just want this to be over so much.. I just want to hold my little one.

And that’s when I broke inside. Part of me just lost hope. I was still sore from only having to had a biopsy the week before, followed by 9 blood tests, diagnosis of a new disease and starting a fresh cycle of IVF. This new wave of pain, and humiliation, was almost more than I could bare. My brain kept asking why me? Why do other women not have to do this to have a baby? Haven’t i done enough? Proved my worth?

Like nearly every single women (and man) wishing for children that don’t come.. I wanted to be welcomed into the mothers groups, feel like I belong with ALL my friends who are now mums. I want to matter, I want to lift this fog and isolation. I want this pain and longing to go away. I want to make my husband a daddy!!! I want Christmas with presents under the tree and a little one too excited to sleep. But mostly I want that moment.. my baby in my arms, and the world a happy place. My life complete. My heart full.

But I did it, AND I’m happy to report my tubes are clear. There’s no blockages. And just as I was about to leap off the bed, to make my run for the door after the nurse removed the catheter and balloon.. the nurse halted me, she said instead I had to shuffle, with a sheet between my legs to the bathroom.. with my gown open.. tears streaking my face. What goes in must come out.. and the idodine solution was having gravity take over. Dignity? Nah I lost that the moment I started this journey.

Making a baby is the fun part…?? I think I don’t understand what fun is.

To all the women and men who are also on this journey, I’ll send a little prayer into the universe for you too. Don’t you dare give up. You are strong.

Now i get to “rest” (in between my cocktail of injections and medication) for a couple days till my next scan. I’m going to enjoy not being sprawled on a table, and I’m going to crochet. And I’m going to keep trying.. and keep breathing. I am strong. I will be a mummy, I just hope the universe is listening.

Love Nat xxx

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Part Three of My Story… in my little cocoon & NK cells (Natural Killer Cells)

PART THREE of my story (Read Part One & Two of my story)

I’ve tried to write this blog post about 599 times, but I just can’t find the words and I’ve been enclosed in my cocoon. I’m exhausted, physically & emotionally. But I feel it’s important to share my infertility story.. not just an outlet for me to express how I feel, but also to give some comfort to others who are on the same journey.. and insight to those who so fortunate to not be.

My last blog post I wrote in a moment of grief after another miscarriage. A way of me mourning the little ones I had lost. Since then I have unfortunately suffered another miscarriage, and a few failed cycles.

PART ONE – I want to be a mum

PART TWO – it hurts because it mattered

This is PART THREE…

We have been trying to conceive now for almost 3.5 years.. with my wedding anniversary looming and a new year, and my birthday.. I start to feel bitter sweet. We celebrate our wedding anniversary but we also mourn the loss of our babies, and another year with empty arms.

I have retreated into my own little cocoon (as my hubby calls it). It’s safe here, the world feels so cruel at the moment, and I think I am trying to protect myself from more grief. Totally emerged in my own cocoon, where I crochet and visit my specialist and watch my cycle.

Since I continue to miscarry and have been trying to conceive for years now, my doctor and I decided to do a biopsy of my uterus last weekend. We tested for Natural Killer Cells (NK Cells).

The biopsy wasn’t much fun, it’s done at the IVF specialists offices, in the chair with your legs in stirrups. Much like a Pap smear, a straw like device is inserted into the uterus, they scrape away some tissue lining, and use a suction device to remove it. Although extremely intrusive, embarrassing and painful, it’s over quick. It feels like very strong, sharp period cramping. But I would do it ten times over, every single day if it helps my chances of conceiving.

My test results came back positive. Extremely high, for NK cells. And, as funny as it sounds, I’m so happy.

I’m so happy it’s another answer, another step forward, a chance at treatment. I’m sad that it wasn’t tested and detected earlier. Unfortunately it’s something they don’t test until you have either had multiple miscarriages or failed attempts at IVF. Only 10% of women have these NK cells, and I am within get the top 1% percentile.

What are NK cells?

Now let me first say, I am NOT a doctor. This is just my understanding of NK cells, and what has been happening with my body. From what I understand. Please always do your own research and speak to your specialist/obgyn.

Everyone has Natural Killer Cells, they are part of your immune system, and what attacks the germs and bugs. When you’re sick, these NK cells attack the germs and help you to get better quicker or stop you from getting sick.

Now normally, when you fall pregnant, your body first sees the embryo (or when you’re ovulating, the sperm) as foreign bodies. And your NK cells go to attack. BUT normally, your body then tells the NK cells that the sperm, or the embryo are ok, and to let them be. And your embryo grows into your beautiful baby.

MY NK cells are overactive, I have too many and they are very aggressive. So what is happening is when either the sperm goes to fertilize and egg, OR when an egg has been fertilized and implants as an embryo my NK cells keep attacking. They either don’t get the message to not attack, or are so over active that the message is lost. And so they attack the little embryo, destroying it, and I miscarry.

It’s quite a horrible and sad way to think about it, that my body is attacking this little life every time. And part of me felt like, the odds are now stacked against me. That even my own body doesn’t want me to have a baby, that maybe I shouldn’t be a mum. But I need to silence that little voice in my head, because I can’t believe my body is thinking like that. It’s just my immune system.

Normally an overactive immune system probably isn’t such a bad thing, and if I wasn’t trying to conceive it would never have been detected and most probably never impacted on my life. I rarely get sick, and when I do, I get better quickly. I thought I was just fortunate, but it’s these NK cells. And they are not helping me conceive.

So now what happens?

I need to break down my immune system. This is done by taking (yet another) injection everyday. A cocktail of hormones and steroids, designed to break down and slow down my immune system so it doesn’t attack the embryos.

If you would like more information, please google “the Bondi protocol” a still experimental treatment, in Australia for NK cells.

The downside of this treatment, there are some horrible side effects… including insomnia (bad insomnia, days on end of no sleep) but I get that from the IVF injections too. Weight gain, and fluid retention. Plus these injections are rather more painful.

Plus, the treatment will break down ALL my NK cells, which means my normal defense system will be down. I will be able to contract colds and bugs a lot more easier. I will have to be careful.

I start this treatment next week, for those who would like to know what it is like, you can contact me ๐Ÿ™‚

I will need to continue with this treatment not only until I fall pregnant, but the whole first trimester and possibly until I give birth. As we can’t let these NK cells come back and attack whilst I’m pregnant.

Like i said, I’m not a doctor, and this is only my limited understanding of how NK cells are effecting my infertility. My recommendation is that if you have had multiple miscarriages, or repeated failed attempts at IVF, please please speak to your specialist and ask (push) for a biopsy test. It’s not fun, but it’s worth it.

For me, this is a small victory, a little step forward. A little bit of renewed (almost completely lost) hope.. that maybe… this will make a difference. BUT I cannot let myself get too carried away.. I know it’s just another layer we have peeled away. I need to prepare myself just in case there are more. But I am hopeful. And I start again, more injections, more tests and scans.. more waiting… and a tiny little sparkle of more hope. I want to be a mum.

Love Nat xxx

There is no “at least” in child loss… None.

Ps. In my experience, it hurts to say to someone who had miscarried (especially several times) AT LEAST you got pregnant.. for me, it hurts because i continue to loose a baby. it’s not just a loss of a baby either.. it’s a loss of a 2 year old, a 10 year old.. a 16 year old. It’s a loss of a life. And it gave you hope. I would rather not get pregnant at all, then continue to loose my baby.