One minute you assume that the stabbing, shooting and pulling pains in your pelvis for the past 8 years have been ‘normal’. The next, you learn that you’re standing alongside 700,000 Australian Women, who also live with Endometriosis each day. After two particularly excruciating episodes of pain in early 2018, which left me gasping on the floor, I knew that something was actually very, very wrong. Like so many Women before me, I then went through the process of specialists, ultrasounds and surgery to finally receive my diagnosis and understand that the past 8 years were in fact not ‘normal’ at all.
I'm the type of person who tackles things head on. So when I found out that I had invasive Endometrial tissue growing throughout my pelvis, ovaries and bladder, I was all too ready and relieved to dive into surgery and have that monster removed. In my mind, at the time, that would be the end. Problem solved. Time to move on with my life. And I did! For about 6 months I was able to experience what it’s like to pass a bowel movement without my uterus feeling like it was tearing open. I didn’t experience breathtaking cramps when my heart rate would rise too quickly during exercise. I didn’t notice the daily random stabbing pains, which are now again, a constant reminder that this battle is not yet over. Slowly, slowly, my symptoms began to return, and my mind started to wander.
After my surgery, my doctor had explained to me how the Endometriosis had attached my bowel to my bladder. And that due to this, she was unable to remove the entirety of the tissue without risking damage to my bowel. I was told that in future I may need to remove part of my bowel. At that time after my surgery, I was drowsy, groggy and to be honest, in a lot of pain. I didn't fully grasp what she was saying and besides, that kind of thing would never happen to me right? Up until now I’d been invincible and my body had always been so strong and resilient for me. Though Endometriosis (to my knowledge) is not life threatening, I still felt that I had been given the first taste of my own mortality. That this body I inhabit, may not be as bullet proof as I’d always assumed.
The thing about Endometriosis is that it’s so silent. I had no idea what it actually was until it directly affected me, and even now I find myself scrolling through articles and blogs regularly to understand more about it. After my initial surgery, I made a YouTube video sharing my story. My hope was that it may help or encourage others to look for symptoms and figure it out a lot earlier than me. To date, that video has had 77,000 views and holds 223 stories from other sufferers in the comments. So this is clearly a topic that people are seeking answers for. It is a beautiful thing to know that you are part of a community, however at the same time, I feel a daily heaviness. That heaviness comes from knowing that as of today, there is no cure, the cause is unknown and apart from going on ‘the pill’, there wasn’t much more that doctors could do for me. It upsets me that there is a very real possibility of me being unable to fall pregnant naturally. It upsets me that like many other women I might have a long line of surgeries ahead of me. It upsets me that my body can’t manage to fix its self. And it upsets me that I have become so hypersensitive to every little pelvic sensation throughout my day, which brings my mind back to what’s going on.
I know that there are people out there who are going through a lot worse than me. Since sharing my story I’ve received emails from young Women in their mid 20’s who’ve undergone full hysterectomies. From Women who can’t count on their fingers anymore how many surgeries they’ve had. From Women who’s professional lives have been so greatly impacted by excruciating pain and the inability to go to work. And from Women who’s personal lives are suffering as the act of being intimate brings them too much pain.
The thing that really messes with my head, is that I feel my options and time frame for potentially having a baby have all been hijacked. Becoming a mother had never been a high priority to me. I just wasn’t that little girl who played with dolls or knew that one day she wanted to be a Mum. But when that idea is restricted or potentially taken away, it's a really strange feeling. All of a sudden it becomes a race. ‘If you want to get pregnant you have to be trying within the first 6 months of your surgery’. That’s what the doctors tell you. I feel like I’ve been left in a weird limbo of wanting to do and learn so much before having children, but now having some weird, unknown deadline lurking in the distance. What if I leave it too late? What if I too, will need a hysterectomy? What if it attaches to my fallopian tubes and closes them off? I just don't feel ready, and i don't want to feel like there is an egg timer held to such a big decision. The control freak in me has undoubtedly been tested by all of the unknowns surrounding vagueness of Endometriosis. I'm sure that others are feeling the same.
Writing is somewhat of a therapy session for me. Getting my thoughts and fears out of my head and onto a page feels like a weight becomes lifted. I’m sorry if this all seems a little doom and gloom. But in my mind, it’s not all roses and butterflies out there, and sometimes it’s more comforting to have someone sympathise with you than to be told that ‘everything will be ok’.
Next week I’m off to see a new specialist to talk about the management or options for me seeing as a lot of my symptoms have returned. I’m approaching with open eyes and an open heart, i’m ready to find the lesson in all of this and grow further from it. Today I wanted to talk not just about the physical challenges of Endometriosis, but also the day-to-day mental impacts that it can have. Living with a disease, which has no cure, is a strange thing, but something that I am slowly becoming more comfortable with. There are some wonderful organizations and people out there bringing light to Endo in a positive way. And I believe the more light we shine on this, the better the future will look for all of us. The government even granted money to Endometriosis research recently which is a great sign that we one in ten Women are getting the message out there.
Namaste x x