Stage 4 Endometriosis – One hell of a pill to swallow!

January 2020, five years after my first fertility investigation, a five minute examination with a specialist gynaecological surgeon determined that I had endometriosis. Five years on this baby train and not one doctor, nurse, consultant or holistic therapist mentioned endometriosis to me. Not even as a possibility. Not once. Never.

Not only was it endometriosis but it was the worst form, stage 4.  The surgeon had found a hard nodule in my womb within a couple of minutes of examining me. And while he needed further testing and imaging to absolutely confirm it, he had the experience to know it was pretty bad. I tried to swallow the huge, hard lump in my throat as my eyes filled with tears. My husband’s expression of shock and despair said it all…

Why did no-one spot this?

• 6 Failed IVF cycles.
• Multiple operations.
• Hundreds of blood tests, genetic tests, biopsies.
• Thousands of very sad and difficult days.
• And more €€€€€€€€€€ spent than we could stomach.

Stage 4 endometriosis, also referred to as ‘deep infiltrating endometriosis’ is exactly that –  it’s deep. For some reason, over the course of my life, endometrial tissue has woven its way around my pelvis, gluing itself to organs, creating a highly inflamed and angry environment. Once we got our heads around the diagnosis, we did some research and realised that finding endometriosis that deep in the body can only be done through specialist investigations. So as difficult as it was to accept, it was unlikely that anyone who treated me over those five years would have spotted it.

And while I suffered at times with aches and pains and unexplained annoyances within my body, I had no reason to really ever consider endometriosis. It just did its thing without me even knowing that something suspicious was going on. Ironically, that makes me one of the lucky ones because so many women suffer so badly every single month, affecting every aspect of their lives for days on end. But it silently burrowed its devilish way into the most important ‘Mammy’ part of my body, making natural or IVF pregnancy pretty much impossible.

And yes, there was a momentary sense of relief finally getting answers that made sense. That so called ‘ah’ moment. But then it hits. And it hits hard. All that money, all that time, all the tests, all the flights, all the prayers, all the hoping…..

As it stands, I’m turning 41 this year. While I’m still clearly 25 in my head 🤷🏽‍♀️, the reality is that things look a bit different now. And before you say it, I know there are options! I am not defeated by any means. I still believe I will have that chance to shop for a pram or a cot and then complain about how I don’t get much sleep or time to myself anymore!!

I like to think that by sharing this story, it will help open up more conversations about endometriosis. It can be a very noisy or an extremely silent disease. One in ten women have it. It can affect your life very mildly or it can take over your life. Ultimately we have to talk about it. It’s not going away. There is no cure. There are surgical and medicated treatments but nothing permanent or guaranteed.

In coming to terms with this after so many years of disappointments, my friend suggested that I remain ‘curious’. She thought that by opening up to the idea of being curious, it would help keep a light at the end of a long, dark tunnel.

 

Till next time. Faith taller than fear xx