Deb’s Story

Endometriosis

My journey starts 14 years ago, soon after I married my childhood sweetheart at age 29…..I had previously been diagnosed with endometriosis at age 25 whilst living in London and had already undergone a couple of surgeries to try and cope with the pain I was experiencing from this debilitating disease. During that time I had been told pregnancy would be challenging but “would fix” my endometriosis – oh the irony.

After almost a year of trying naturally, my gynecologist suggested we try clomid to help things along a bit. After five attempts at that, it was suggested we move to IVF. At that point in my journey I was in denial and thought IVF was not for me and that a miracle would happen. I had heard so many times from well-meaning friends and family “just when you won’t expect it, it’ll happen” or “just relax and it will happen”. But, as many of us know, that is not the cure or the answer for everyone.

We moved to Hong Kong for a work opportunity for me in 2011 and at that point I needed to focus on my new job and naturally in the back of my head I thought – this might just be the relaxing or shift of focus I need to make our miracle happen. Again, it wasn’t to be.

Late in 2011 after investigating a load of options, we decided to travel to Bangkok under the care of Dr Wiwat at SAFE fertility. Dr Wiwat is a humble man who genuinely became a trusted friend to help us on our journey, he was honest when aspects of my health were beyond him and he always tried to understand more.

We underwent two full rounds of IVF in Bangkok and our numbers of embryos were very good. We never PGD tested at the time as the numbers were so high and it wasn’t a really popular thing to do at the time, just optional.

For the next 3.5 years we underwent six embryo transfers from those two rounds, mainly single transfers but a few double embryo transfers – one of which never went ahead as the embryos did not survive defrosting which was very unusual for our clinic. Those days just felt so stressful but there were moments of joy and always relentless hope.

International IVF had its challenges: scheduling flights around my cycle and managing work around that for both my husband and I; having to delay flights due to delays or complications in treatments; having to scan and do blood tests in Hong Kong; paying for flights and hotel, amongst other logistical challenges. These are all things you need to consider in your situation and ensure they will not cause too much stress for you, on top of what you are already dealing with.

Early in 2015 I caught up with a friend over a cup of tea and was sharing with her my usual woes about my fertility and also the very bad pain I was suffering from daily due to the endometriosis. I told her that four years prior a doctor in Hong Kong had recommended I speak to a professor in endometriosis who was based in Sydney that he felt was the best person to help my complicated case. It wasn’t what I wanted to hear at the time so I never called and instead just focused on trying to get pregnant. As we said our goodbyes she said ‘if there is one thing you do out of this catch up, please call that doctor and just see what he says’ – so I did.

That doctor was Professor Michael Cooper in Sydney, Australia. He said to me over Skype (no zoom back then J) immediately that I had a very severe case of endometriosis (Deep Infiltrating Endometriosis) and he could tell that from the few scans, photos and description of my pain that I shared with him, I could have 100 rounds of IVF and never succeed. As shocking as that was, the tears I cried afterwards with my husband were also ones of relief and validation – validation that it was nothing I was doing that was causing these IVF failures and validation that the extreme pain I coped with daily, was real and not something I should be suffering.

I scheduled surgery with him soon after and arranged to travel to Australia for two weeks.

Little did I know that that operation would turn out to be one of the most traumatic events of my life, everything that could’ve gone wrong went wrong – nine hours of surgery later with three surgeons covering different specialties operating on me, doing their best to preserve what they could of my reproductive organs, bowel and bladder. I am forever grateful for those doctors having the utmost respect for my desire to have children, and for their skill and empathy to get me through that time.

I ended up stuck in Sydney for 2 months unable to travel back to Hong Kong in what felt like rock-bottom as I lay there, slowly recovering. I remember lying in the hospital one day watching on the news that a bomb had gone off right outside our fertility clinic in Bangkok and after confirming everyone in our care team was safe, I couldn’t help but wonder if my embryos were. Fortunately that was confirmed a few hours later, but I really was wondering what else was going to be thrown at us.

Over the course of the following year from July 2015 until August 2016, I underwent five surgeries, most of which were to correct or fix things that were complications from the major one in 2015. It was a tough time with more surgery difficulties and surprises that I was forced to be patient with, as all I wanted was to capitalize on the post-surgery window to try and get an embryo in – because of course it was finally going to work this time, right?

Finally in November 2016 it was time to go and see Dr Wiwat for my FET (Frozen Embryo Transfer). Everything went smoothly and in it went. At that time, sadly my father in law was unwell and my husband had to travel immediately after the FET to New Zealand to be with him. I sent him on his way and said I would call as soon as we got the pregnancy test results. I really wasn’t expecting anything but positive news but sadly, it was another miss.

That time was very devastating. Most of what got me through the past year was the focus on healing to prepare for my baby as this was the best chance I had. Even though at stages through all the surgery, my husband and family had said this is no longer about a baby but your survival, as there were times when I really was very unwell.

I soon followed my husband down to NZ for Christmas and we focused on us, we ate great food, rode bikes, went hiking, lay in the sunshine and we talked about adoption seriously for the first time, we were going to be parents one way or another.

After that trip we came back to Hong Kong and booked the next trip down to Bangkok in late January to try again. Nothing was special about this trip apart from we were different, we were closer, we were a bit worn down but remained determined not to give up.

A couple of weeks later we delayed our blood test to have it on a Saturday when we could spend the day together. We received an email test result and lay on the couch holding each other. The results were in and just like that, we were pregnant on our eighth embryo transfer, after almost eight years and surviving eight surgeries, our lucky number eight.

The pregnancy was not an easy one due to my health background, with long periods of bleeding and in the end some complications due to excessive scar tissue, but our perfect boy was born and the gratitude I had for my body, my husband and everyone on our journey, continues today whenever I look at him.

It was only 6 months later that we decided to start putting embryos back in and over five years later unfortunately no more babies have come our way. By a cruel twist of fate we had a miscarriage at nine and a half weeks after a successful FET in February 2020 (right as the pandemic was taking hold). That was a new level of devastation that took a long time to work through, especially not being able to see my immediate family and friends.

I felt at the time that the hard work was behind us and we had ‘done our time’ to be able to have something come to us with ease. That is not to be in our lifetime and building our family has been a journey of self-discovery, hard work and unrelenting Hope.

Advice I give to people experiencing despair, confusion or exhaustion is: concentrate on putting one foot in front of the other – take one step/day/hour/treatment/stage at a time; practice gratitude for even the smallest things to keep your mind hopeful; and always go with your gut, you know better than anyone what the right thing for you is and trust that even if you feel lost, you will find your way.