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.
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 🙂
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.