‘I am lucky’: Learning to live with endometriosis

HAVING a hysterectomy at 26 isn’t something that many women can say they have been through. I have, and it isn’t something I would wish upon anyone.

Five years ago I struggled with endometriosis and had a hysterectomy as a last resort. Medication didn’t work. Changing my diet didn’t help. I was in limbo. After trying everything, (conventional and not), I was desperate.

Yes, I am fortunate to have three daughters, but I feel like a part of myself is missing. Well, technically, it is.

Before, people would come up to me and say, ‘You should be grateful you have three daughters,’ and I am, don’t get me wrong – but this disease took my choice to try for another baby. To be able to connect with my daughters when they get their periods. They don’t remember or see normal female behaviours in our household. Women bleed; I don’t now.

I would bleed through my clothing constantly. The crippling pain. The non-existent energy. This disease controlled (controls) my life. But supposedly, I looked so healthy. I looked so happy.

I looked like I had an eating disorder, and I probably did have one. I was obsessed with what I ate because I knew some foods made my Endo flare up. Yet, some days I would look six months pregnant from the bloating.

My hair was falling out. I was an emotional wreck.

2016 was the year. A few weeks before my surgery, my grandmother passed away, the central figure of my family – the woman I looked up to, who believed in me. My marriage was failing, and my body hated me.

I knew I needed this surgery, and I was running out of options.

My beautiful doctor, who had been my gynaecologist for over ten years, came to me after my surgery in tears. My Endo was horrendous, and if I didn’t do what I did then, I would be fighting for my life now (battling cancer).

I am lucky.

Everyone tells you the recovery from a hysterectomy will be challenging, but until you experience it – you have no idea. The recovery was the worst pain I have ever experienced in my life. I felt like my body was cut in half.

I told myself I deserved this pain and suffering because I was a horrible teenager – that this was my body’s way of ‘payback’. But in my mind, I felt like I deserved this. I earned this disease and the trauma that came along with it.

It is tough to be strong for my kids while constantly scared they may face the same challenges I did. A constant voice in my head tells me that my daughters will have Endo when they get older, which terrifies me.

Growing up, I knew I was different to my friends. They would have their periods for seven days, and I’d have mine for three months. I don’t want my girls to feel like that. The constant fear and judgment of bleeding through your clothes, missing out on activities because of pain or bleeding. It is depressing.

If someone in your family has Endo, the chances of developing it are seven to 10 times higher than if someone in your family doesn’t. So, chances are my girls will have it.

I had my girls young, knowing that it would be a struggle as I got older (it was still a struggle in my 20s).

I didn’t know who I was at 20 (when I fell pregnant); I was just scared – terrified that my body would fail me and that this was my chance to become a mother.

When I was first diagnosed, Endo was taboo. I wasn’t told about freezing my eggs – or anything like that; it was just ‘have a baby’. People thought I had a sexually transmitted disease. I was treated like people could catch it from me.

I was prescribed Clomid, a fertility medication that helps you ovulate to fall pregnant. I was 23 years old, and we tried for another baby for nine months. I did two cycles of Clomid before falling pregnant with our second daughter.

My middle daughter is now eight years old, and I am so very thankful to have her, but did you know that fertility treatments increase the chances of neurodiverse disorders? Me either. Annabelle is on the Autism Spectrum, and the judgment and opinions from that are unbelievable.

I am lucky, and I know that many women who suffer from Endo cannot have children at all. This disease takes away women’s choices, my choices, our options. This disease has impacted every aspect of my life.

I can’t tell you how many times a week that strangers see me with my girls and say, “Are you going to try for a boy?”

I know they mean no harm; I just smile and say, “I’m happy with my girls – thank you.”

However, I could say, “I can’t have more kids; I had a hysterectomy.” But guess what, no one wants to hear that. No one wants to listen to my struggles in my pregnancies or how hard it was for me to fall pregnant.

People look at me because I’m young and assume things about me. Their assumptions hurt.

People judge me because I’m studying now, studying I should have done before I had my girls. That I don’t have my life together, that I should have had myself ‘sorted’ before I brought children into the world.

But I couldn’t study then. I couldn’t stay in a job – Endo controlled my life.

I was told that no one would want to be with me because I couldn’t have more children. I am too complicated. That no one would love me because I already had children. I was told that I was broken.

I’ve been repeatedly told that I’m different, that supposedly Endo is a dirty disease. I’ve been told to get over it. But I can’t because I need to fight – I don’t want my girls ever to experience what I have had to.

For too long, I was told period pain was normal. That bleeding for extended periods was okay and that I needed to get on with it.

Don’t tell girls these things – instead, let’s educate our children. Education programs in our schools and, most importantly, designed for parents. One in nine women have Endo, which isn’t an obscure condition – it affects so many of us. Yet, it takes between seven to 10 years to get a diagnosis. „

` Everyone tells you the recovery from a hysterectomy will be challenging, but until you experience it – you have no idea ... a – Danielle Maidens