Where to begin…

I have been wanting to write this for several years now, but I have always chickened out of it for some reason. But, here goes! 

My name is Melissa and I am 25 y/o originally from Sydney but have recently relocated to Adelaide. I am married to a wonderful and supportive husband named Harry. Of course, I must not forget that we have two adorable and quirky pups named Macey and Arnie who bring us so much joy and laughter!

Let’s get right into it now shall we? 

My journey to diagnosis started in my teens. My mum had been preparing for the ‘moment’ for quite some time and being the overly prepared mum she was, decided to stock up on over a dozen packets of pads of numerous types and brands but of course, we later discovered that those were not actually necessary (sorry mum!).

When I was approximately 14 y/o, my mum became rather concerned as to why I had not yet experienced my first period, so naturally she arranged an appointment with my local GP. The doctor did not at all seem concerned and just said ‘come back next year if ‘things’ don’t change’.

A year went by and when I turned 15, I visited the same doctor again. This time she said, “Ok, let’s book you in for a blood test”. I eventually had the blood test (after several attempts and nearly fainting because I suffered from ‘delicate veins’). The results came back about a week or so later as ‘within range’ and ‘completely normal’ the doctor went on to say “you’re most likely just a late bloomer. You are also quite athletic and slim too - I would suggest maybe putting on some more weight. Also, it’s probably just because you are of Polish and Serbian descent”. Hmm, okay. I thought that seemed a little odd and of course, the doctor said, ‘come back later if nothing changes”.

Another couple of months went by and I was approaching 16; I was becoming increasingly concerned so I thought I’d better go back to the doctor once more. Finally the doctor said, “Ok, let’s book you in for an ultrasound”. On the day of my ultrasound appointment, I was feeling a bit anxious, however I thought ‘it will be ok’ and I was right! The reporting doctor had simply concluded on my ultrasound results that I had a ‘retroverted uterus’ which was ‘difficult’ to visualise. I was reassured that all was well and as my mum had also previously been told many years ago that she had a ‘retroverted uterus’, I felt I no longer had anything to worry about as everything was clearly fine!

Ready for it? 

Okay, well another year went by and I thought what is going on? I am nearly 17 y/o and I am seriously the odd one out amongst all my friends at school! On this occasion, I decided to see a different doctor who suggested I get a more ‘specialised and detailed’ ultrasound at a specialist women’s health clinic. I remember this day so vividly. I was nervous, my heart was racing, my hands were shaking, and I didn’t know why! I was also unbearably uncomfortable from having to drink so much water but I just waited patiently until I was finally called in. The sonographer applied the cold jelly on my stomach and proceeded with the ultrasound. A couple minutes into the ultrasound the sonographer’s face had said it all. He looked a bit ‘off’ and his eyes had a look of pure disbelief. I thought to myself, ‘what is going on?’.

The sonographer left the room and later returned with several other sonographers and doctors. The looks on their faces were the same and I suddenly had a room full of strangers hovering over me as though I were some sort of ‘magnificent and majestic creature’. And then, I hesitantly and softly asked, ‘Is there something the matter?’ Instantly I was struck with quite intrusive questions, “Have you ever had a hysterectomy? Is there something you want to tell us? ‘Are you hiding something from us?”

Now I look back and wish I could have rolled my eyes and sarcastically responded with, ‘Yeah, I’m hiding a uterus somewhere”.

That afternoon, my mum and I waited anxiously for the report and eventually we had it in our hands. We could not wait to open the letter but that was probably a bad idea! We sat down on a bench in our local shopping centre and read the following: ‘absence of the uterus, left ovary not located - further investigation required.’ 

WHAT?

My mum and I looked at each other and we were suddenly overcome with intense sadness and shock - our eyes began to weep with tears streaming down our faces. I quickly ran into the nearest bathroom to hide and pull myself together. My pale face was paler as I delicately wiped away tears from my sad, blue eyes. I just tried to keep it together. 

‘Mum, mum – I am fine. Don’t worry about me. I will be ok’. 

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After the initial shock of it all, we were called to attend another appointment to further discuss the results and for an onward referral to a ‘fertility specialist’. The appointment was short and brief; to the point and probably a tad insensitive. The specialist read through all my medical notes as well as the recent report. The doctor then randomly grabbed a diagram of the female reproductive system, scribbled all over it and said…

“...so, you’re basically missing this (a uterus). I don’t know what it is. I don’t know how it happens. There is no cure or treatment but you cannot have children. I suggest you do your own research through google and come back to tell me what your findings are.”

I was distraught and concerned, ‘what does this all mean for me?’

My future dream of ever becoming a mother was shattered into a million pieces and was suddenly taken away from me. That night, I spent hours reading through various medical articles and I came across something which seemed to match my ‘diagnosis’, Mayer-Rokitansky-Kuster-Hauser Syndrome or MRKH as the acronym. I realised I wasn’t one in a million like I had once previously been told but I was actually a 1 in 5000 statistic. This suddenly felt less lonely. I eventually stumbled upon an MRKH support group where finally, I had something in common. I thankfully managed to get in contact with Ally Hensley, MRKH Advocate, who helped me get in touch with a specialist with the knowledge and experience on this syndrome. Yay for me. I attended this appointment with this doctor and for the first time, was approached with kindness and concern. I was instantly referred for a laparoscopy and was even placed on a shorter waitlist because of the kerfuffle I had originally been through. 

I had hope.

I was approaching 19 y/o by this point and had just begun studying at university but suddenly, I had to worry about something most people my age didn’t really have to.

Do most worry about becoming a mother in their late teens?

It is surgery day and I was the first patient on the list. I arrived at 6am and felt extremely nervous. I didn’t even sleep the night prior but I was just grateful that I would be able to have something more ‘official’ to hold on to. A couple of hours passed, and I was very drowsy and groggy from the anaesthetic needed to perform the laparoscopic procedure. I heard the gentle voice of someone speak to me, “it’s all done and dusted now, Melissa. You have two beautiful, healthy ovaries and fallopian tubes, you will be just fine”. A doctor from the team later explained my diagnosis in depth and reassured me that I have options such as pursuing surrogacy. As the doctor said, “You have the eggs, just not the basket!”

I will always remember that day.

I was officially and finally diagnosed; it brought some relief to me to finally have an answer after all these years of repeated and unnecessary tests but at the same time I was so shocked. I later fell into an extreme depressive state. I did not want to leave the house. I struggled with suicidal thoughts. I was overcome with horrible idealisations. I kept telling myself I was not worthy and that no-one would ever love me because I was ‘broken’ and had a ‘missing piece’.

I even struggled to do something as simple as go to the shops without bursting into tears. Whenever I would see a pregnant woman, babies in their prams or children running around -  I would fall apart. I refused to attend family events where children or babies would be present or anything similar. I just wanted to curl up into a ball and be left alone. I isolated myself and refused to go anywhere. I could not even talk about it and whenever I tried, I soon shut down again. I felt so incredibly alone; different and weird. I struggled to keep up with my studies as I kept it all to myself – hidden. I could not cope. I suffered in silence for nearly a year and felt I had lost myself in the process. I was broken into many little fragments and felt I was beyond repair. Until, one day when I thought out of the blue, ‘enough is enough. I need to do something about this.’ And so, my journey to self-acceptance had begun.

It did take quite some time, but I created my own coping mechanisms and even tried to change my mindset. Instead of comparing myself to other women and thinking how ‘great’ they have it to be able to bear children, I turned things around. It may seem like a silly approach, but I tried to see all the negatives to having kids as opposed to the positives. I saw screaming children throwing tantrums at the shops and thought, ‘geez, that doesn’t look fun’. I heard pregnant women complain about their uncontrollable cravings and moods and how tired and unwell they were feeling. I saw some women who decided to put a hold on their passion and/or careers because they had to dedicate their time and energy into raising their children. I thought to myself, ‘wow, I can pretty much do whatever I like and not have to worry’. This was not always the case though as I had silently judged pregnant women and mothers whenever they would complain. I would think to myself, ‘why don’t they realise just how lucky they are?

Soon, I was able to attend family events including my nieces and nephews’ birthday parties. Those once awful and consuming negative thoughts about my self-worth and my inability to carry a child slowly begun to diminish. I looked up to many strong women who did not want children or were infertile themselves and they were and could still be happy nevertheless.
To this day, I am able to not let those negative thoughts consume me as they had once previously done so on a regular basis. Of course, I have some off days here and there but that’s expected. I now have the strength and courage to carry on and you do too!

Late last year, almost suddenly out of nowhere there was the long-awaited mention of the Australian Uterus Transplant trial commencing in Sydney. Without any hesitation, I instantly sent an email to enquire more about the process I soon received a phone call to ask if I would like to attend an appointment to discuss the screening process further. I was instructed to bring along my partner and a donor (if I had one). Going back to when I was first formally diagnosed, my mum pulled me aside one day and said,

“Mel, don’t worry you will be a mother one day and it will work out in some way - maybe through surrogacy, adoption or who knows. There may even be uterus transplants as an option for when you’re older and I will donate my uterus to you!”

And so, this overwhelming and emotionally charged, yet exciting journey began.

On the first day of our appointment for the trial, we were instantly referred for tests. My mum and I both had more than twenty-two vials of blood drawn for pre-transplant workup. Surprisingly, my ‘delicate veins’ coped well, and we were later called into the clinic with good news. My mum was a perfect match and were deemed ‘ideal candidates’ to participate in the study!

From around early November through to the beginning of 2020, my partner, my mum and myself attended regular but necessary appointments which also involved meeting the entire team who were assisting with the trial. We attended appointments for ultrasounds, MRIs, CTs and other examinations including a psychiatric review and counselling sessions to determine if we were indeed suitable to proceed. All was looking great! Until, yep, you guessed it – the COVID-19 pandemic hit. Suddenly, everything slowed down and eventually it all came to a halt!  Harry and I were almost ready to commence the IVF process and we were just waiting for approval from the ethics committee with surgery to be planned in late September (just after our wedding).

Unfortunately, the screening process is currently paused with the hope to recommence early 2021. We regrettably had to withdraw from the trial as my donor (my mum) would no longer be within the age bracket required in the criteria. My mum had just turned 66 y/o back in October but in a way, I am a little relieved moving forward.

And so, our next journey begins! 

When my husband and I are ready, we plan to pursue the IVF process and look further into surrogacy but for the meantime, we are just going to enjoy married life – with a much-needed honeymoon to look forward to in the future.

Wow, that was a lot! 

I hope in some way, whoever reads this may relate to my story and any feelings of loneliness subside. To not feel as lonely as I once did. I try my best to raise awareness on MRKH whenever I can, as I look back at my younger self and think if only my journey to diagnosis was originally handled with more kindness.