GUEST WRITER: My Relationship with Endometriosis – I Had a Hysterectomy at 32

This article was written by the wonderful Lo-Arna.

My feelings toward Endometriosis change all the time, but lately I’m on a positivity kick, even though I am currently the most ill I have ever been.

I’ve decided to focus on the good it’s brought me.

I actually wouldn’t be who I am today without it.

I actually wouldn’t be who I am today without it. 

I’ve lost organs and friends but I’ve gained so much strength and resilience. I’ve been a prisoner in my own body, an unwilling participant in violent, painful attacks but I look at everyday as a new chance.  A fresh page.

People are only supportive to a point with any chronic illness, but I don’t take it personally anymore. I realise it’s them – not me. They can’t spare the energy anymore that it takes to have when having a sick friend.  I appreciate it’s out of their emotional capacity to continue treating me as the person and not the disease, and I don’t have any hard feelings – this journey isn’t for the faint-hearted!  I used to get upset. It used to make me feel even more isolated, that I was worthy of being abandoned. That I was being punished for my wacky health.

But I finally don’t care.

Endo is both my enemy and my best friend. My strength and my weakness.

But I continue to talk about Endometriosis to everyone and anyone not for personal attention, but to get people to realise just how common and life-changing it is.

Let me try to explain in a way that might make sense …

Imagine taking your kids to the shopsfor a half hour and then being too wrecked to do anything else remotelyconsidered good parenting for the rest of the day.  Mums, remember the pain youhad during labour?  Imagine that x10 but having to function normally and goabout normal life stuff while enduring that pain.  For women without children,imagine the most devastating period or gastro episode you’ve had, combine them,and multiply by infinity.

Imagine having a disease that originated from your reproductive system but also affects your skeletal, digestive, respiratory and nervous systems.  Imagine being riddled with scar tissues and adhesions from internal bleeding.  Imagine your organs sticking together in a love fest.  Imagine having people look down on you for being lazy or dramatic when in reality, you’re fighting with each breath you take and you go to sleep every night despite whatever unspeakable horrible pain you endured that day, with the optimism tomorrow will bring with it a better day, because your grandparents always told you the sun would rise again tomorrow. Imagine your 9 and 10-year-old’s being fully aware how sick their mum is and asking with fear in their eyes if they will inherit such a horrible fate from you.

Imagine being so tired sometimes it’s all too much and putting one foot in front of the other is so hard it makes you want to break down in sobs because this life thing, it really wasn’t meant to be this way, was it?

Imagine thinking if you knew how hard your health would be on yourself and those around you, a crystal ball peek in to your future, maybe you wouldn’t have being selfish about wanting to have kidss o they didn’t have to endure the crappy reality of a sick mum.  Imagine having surgeries and tests and tubes inserted everywhere in your body to find more answers. Imagine having organs ripped from your body with the hopes of a new chance, or less pain. Imagine talking about it to others to ease some of the stigma and make others aware (anyone with daughters should be making sure they know ALL about it), but their eyes eventually glaze over with boredom.  Your pain makes them uncomfortable and eventually, they drift from you or tell you they don’t want to see you anymore because you’re negative.

Let me tell you something about people with chronic pain.  Some may be stuck in negative ruts but most of us are swimming against the odds every day to find the light at the end of the tunnel.  There is no cure for Endometriosis, only adjustment, endurance and a fight those who aren’t sick can’t even begin to comprehend and those using the word negative do not have a clue.  Not one.

Instead of judging, offer a kind word. You don’t know, it could be just the torch someone was needing in their darkness.

I live clear across the country from family.  Only a small number of my family talk to me anyway.  I parent solo and run a house solo.  I study full time at uni.  I am a fighter.  I don’t give a (insert beep!) what any of you say because those who judge, wouldn’t last 1 day living my life and those judging are the negative ones.  I keep trying, I keep fighting and 99% of the time I do it with a smile on my face.

I was given this life because I’m strong enough to do it.  Some days I can’t even walk, today being one of them because yeah, I went to the shops for half hour.

I practice yoga, meditate, focus on the positives, I’ve learned I can’t hate my body and we are in this together, I eat anti-inflammatory foods (I can’t say no to coffee though, this disease has already taken so much it’s not taken that too), I do everything that is recommended of me. I’ve tried it all.  And guess what, Endo still rules my life.

Endometriosis affects over 200 million women(Endometriosis Foundation of America) and I don’t care if you knew someone who had one excision surgery and got better, good for them! This is a disease that has been found in the lungs, brain and chambers around the heart it’s no joke and it’s about time people started realising it isn’t.

Where my uterus sat, it feels like a fist is in there squeezing and contracting violently.  So violently I fight not to vomit from it.  My ovaries burn, stab, throb and rip. My back feels like a snake is wrapped around it, the muscles and bones in my back and legs feel heavy, tight, spasming.  Each wonky step I take feels like the bones around my knee will shatter. My vision is blurry and under too much stress.

My body is under too much stress.

Invisible illness is not invisible, you just have to care to look.

Silence of this disease is a disease within itself and I wouldn’t wish this pain on my worst enemy.

I had a hysterectomyat 32.  Everything was taken but my ovaries, even my tubes. My ovaries are upnext which means menopause at 34.

Earlier diagnosis might change the fate of many sufferers.  Be aware, spread the word and don’t judge.  Judging usually is a side-effect of fear or not understanding, so I hope you understand a little more now how devastating Endometriosis  is to us.

Lo-Arna is a mum to two wonderful children, and runs her Instagram account spreading awareness and writing about Endometriosis.  She is studying a Health Science degree with an ambition to become a nutritionist, in order to help others with chronic illness.  Lo-Arna is also a self-published author.  Find her social media information below;

Instagram: @loubelle__

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