Josie Wiley On Her Journey To Motherhood, While She’s Still In The Middle (Part One)

02.05.21

 

So many stories of infertility are told from the perspective of those who have made it out the other side. Who have survived the thing that felt unsurvivable. Who, at long last, have their baby. And while those stories can provide much needed hope and comfort, they can also be further alienating to women who are still unsure of how their story ends. I’ve heard Josie’s story a number of times now and every single time it takes my breath away. It’s impossible to overstate the challenges she’s faced in pursuit of motherhood and I’m so grateful she wanted to share her story with me, and with you, in the hopes that it will bring comfort to anyone else “still in the middle”. 


Tell me about the early days of your fertility journey. When did you and your husband first start the conversation, and were either of you aware that you may face difficulty?

I was 11 when I got my first period and by 13 they had started to come with a vengeance. What started as monthly, became fortnightly, then weekly, then daily. I had my period every single day for my first year of high school. I was severely anaemic, quiet, and withdrawn. I became known as the “quiet and shy” twin, and my sister the “outgoing” one.

I used the mini Pill to help regulate my periods and things seemed to settle down temporarily, but as I grew older and became more educated on the effects of taking a synthetic hormone, it no longer felt right – I realised I didn’t know my body at all. I stopped the Pill just before my husband and I got married in 2017. I had no issues coming off the Pill; I had a perfect period straight off the bat, I lost a few kilos of water retention, my skin remained clear, the fogginess in my brain went away, and I had more energy. My husband and I felt ready to start trying for a baby.

Fast forward to 2019, the heavy bleeding began again. My body’s natural cycle, having been suppressed for years, was now communicating to me that I had never actually got to the root of the problem. I was becoming a monster to live with; I couldn’t control my emotions due to being in constant overdrive of hormonal imbalance. I was worn down by the debilitating bleeding and pain, I was fed up, exhausted and confused as to what was happening to my body and my mind. I started to wear excessive baggy clothing to mask my bloating to the point where it became an obsession, and I was unable to exercise as the smallest movement would cause me to essentially bleed out.

One afternoon I was having a rare break from a bleed, so I decided to go for a run. I headed down to a reserve which takes you through a small forest. Not long into the run I knew I was in trouble. I sprinted to a secluded part of the forest and literally had to scoop the contents from my underwear and bury it in the earth. That was my breaking point.

It had become clear that perhaps my anatomy wasn’t like everyone else and a visit to my GP confirmed that I did in fact seem to have a vaginal septate that causes two channels, instead of just one, leading up to my cervix. This explained why tampons were never an effective tool as I technically would have needed to use two at a time to manage the blood.

 

What were some of the earliest indications or memories you and Jeff have of realising that conceiving a baby naturally was going to be a challenge?

After I had my first Hysterosalpingogram (HSG) scan in 2019 I was told I had a slight septum (also known as a uterine adhesion) in my uterus which can cause miscarriages and infertility. This scan can also see if there are any blockages in your fallopian tubes. To do this, a balloon is inserted via a catheter into your uterus, releases the dye and shows any areas of concern on an x-ray screen. This is not a pleasant procedure and one of the potential side effects is your body can go into shock. This is an extremely painful reaction and unfortunately happened in my case; my tubes started to spasm uncontrollably and as a result we were unable to get an accurate read.

The doctors decided that the first step was to have the uterine adhesion removed via a Hysteroscopy, which is done vaginally. This is where they burn off the excess tissue to create a more rounded uterus. I also needed a laparoscopic procedure done, which is completed though a few surgical excisions in your lower abdominal wall to locate and remove the endometriosis by key hole. It wasn’t until just before going in to theatre I was advised that if my tubes were blocked they would have to be removed for my own safety. Jeff and I looked at each other and had less than a minute to digest this before I went into theatre. It was only after hearing that, that I realised we might have trouble falling pregnant.

Following the surgery, I was told that it wasn’t actually a “slight septum”, but a full uterine septum which divides the uterus into two. What we thought was a small dip was in fact something far more challenging. I now had two cervixes, a vaginal septum, and what we had initially thought was a small amount of endometriosis was actually Stage Three and implanted in my lower organs. I was booked in for the excision of the vaginal septum a few weeks later on Valentine’s Day. I joked to Jeff he was getting the ultimate Valentine’s day present: A new vagina!

  

You’ve experienced both miscarriage and ectopic pregnancies in the past couple of years, are you able to speak about these experiences and how they have impacted your willingness to continue trying to conceive?

I was told that the three to six month period after having endometriosis removed is when you are at your most fertile, and after my surgeries my medical team were confident I faced no further obstacles in conceiving naturally.

In July 2020, I woke up with severe pain in my pelvis. I decided a gentle walk might help as the pain was crippling, but I only made it twenty metres before momentarily collapsing. I called my specialist and she booked me in for bloods. I remember the call from the nurses the following day telling me all my hormones looked normal – and that I was pregnant! I was so, so happy and shocked! For 24 hours, Jeff and I shared this special secret, but the pain in my pelvis never left. We went to A&E the following night and were immediately admitted to ED. This led to a gruelling three months of being in and out of hospital, countless bloods tests and scans, and an overall experience I think I am still triggered by to this day. I was told I was 10 weeks pregnant but was losing the baby and potentially had an ectopic pregnancy that would require surgery to terminate. I can’t explain how it felt to go from such a tremendous high, to the lowest of lows in such a short amount of time.

I remember driving to the Emergency Department and asking the Universe for a sign that everything was going to be okay – I asked for a red circle. I was taken to the Women’s Assessment Ward and in my room there was a red Christmas bauble hanging from the ceiling. In the middle of the year, with no other decorations around, I took that as my sign and held on to that as comfort that perhaps I was being watched over. To naturally miscarry was the best outcome in this situation, and after a couple of days my HCG hormone began to drop (a sign of miscarriage). But after miscarrying for a week, my HCG began to rise again, and by this point it was beginning to feel like a mind fuck. This meant the embryo was still inside me and was trying to latch on. This made my heart break as our beautiful little baby was trying so hard to survive.

The doctors operated, located the pregnancy in my Pouch of Douglas and I was told it had been successfully removed. However a couple of days later I received a call to say that what they thought was removed pregnancy tissue, was in fact excess scar tissue and a blood clot, and the embryo was still inside. At this point I broke. Up until then, I’d mentally coped by completely detaching from my body, and instead focusing on the logistics – procedures, appointments, daily blood work – but now it was too much. Now there were more stitches in my stomach that didn’t need to be there, more scar tissue contributing to my infertility, and doctors we trusted who were telling me they had removed the embryo when they hadn’t.

 

Part two of Josie’s story, coming soon.

 


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