My Story - The Life of Endo I Live

Endometriosis

Endometriosis affects almost every aspect of my life! My job, my social life, relationships, and my eating habits. Most children I knew were worried about acne, sex, and what they looked like when they hit puberty. My worry was reaching the time of the month when my period came! I was 11-years-old when I first started my monthly circle.

I was such a young girl going through unbearable pain.

I couldn't even put into words the pain I'd feel, and in fact still to this day do.

It is so crippling you cannot move from the same position. I'd be stuck rolled up in a ball for hours on end.

I had so much time off school and college.

I started the contraception pill aged 12/13 to try to help me with the pain and lighten my flow, not because I was "sexually active" (which I wasn't at this point) but this was the only thing the doctors could offer me at such a young age. Throughout years and years of never-ending pain and thousands and thousands of trips to the doctors and A&E with no help in the slightest, I decided to take myself to a sexual health clinic (aged 18).

At first, I was diagnosed with PID (pelvic inflammatory disease).

I had to try and explain to my current casual sexual partner that I'd been diagnosed with PID and he had to also be treated for it.

You'd automatically think it was an STD—when it is far from one.

It was embarrassing trying to explain this to someone.

After finishing the medication, nothing had changed. I was still in the same boat as I was before! I then went on for more endless tests for STD's, which kept coming back clear.

So what did they do next?

They gave me more PID antibiotics... ofloxacin, metronidazole, ceftriaxone, and doxycycline.

Two at a time, two weeks' worth... In total, I had 16 weeks worth of antibiotics. I can still remember how drained and poorly they made me feel.

Eventually, they moved to the next step and realized they weren't working.

I was referred to see a consultant, who then referred me to have a laparoscopy. I can still feel that relief of maybe finally figuring out what is wrong with me.

Operation day, the nerves were beyond high... All of these thoughts rushed through my head: "What if I don't wake up?" "What if I'm awake but my body's unconscious and I can still feel everything?"... (The most bizarre and silly thoughts I must say!)

Eventually, when I came to after the laparoscopy the consultant stood at the end of my bed and said, ''You have something called endometriosis. We found and removed three parts of it from your pelvis''

WhAt ThE fUcK is en-doh-mee-tree-OH-sus??

I was left so baffled and confused!

Don't get me wrong, my surgeon was brilliant and made me feel so comfortable, but I was not left with much information at all.

I never knew the ins and outs of endometriosis. I automatically thought, "Yay no more pain, I'm better!"

Three months went on and little did I know, endometriosis is a recurring illness.

I lost two jobs due to endometriosis as I became unreliable. My employers didn't understand. They thought I was lying because I didn't physically look unwell. They called it "a bad period." I started to feel numb.

I started doing my research on this dreadful illness, attending the doctors more often again for help.

One doctor actually told me to have a baby as that's the only way it will cure me. At 19 years of age, in no relationship, he was telling me my only option is having a child, although having children may never be an option for me due to infertility.

That hit me like a rock.

Another doctor told me a hysterectomy is also another option for women when the endometriosis grows back more aggressively!

Depression and anxiety took over my mindset and my body.

I had a constant fear of never being able to have my own family one day.

The constant fear I will never meet a man who could put up with endometriosis.

2016 I didn't have a sexual partner for ten plus months because the thought of sex made me feel physically sick. When I had attempted it before, it was way too painful to the point I'd be in tears.

I went into such a dark place I never actually believed I would get out of it. I genuinely thought... this is it.

Career plans, friendships, future dreams = ruined.

I felt like the whole world was against me because no one understood what I was going through. I was known for being dramatic, lazy, and a huge "FUCK up" basically.

I'm the sort of girl who's always got a smile on her face, the girl who is always trying to fix everyone else's life problems.

I'm never the sort of person who unloads my issues onto someone else.  Even if I know I can, I never will... They have to fight it out of me!

So in ways, I understand why people would think I'm lying when I say depression and anxiety took over my life. I never let anyone see me in that dark place because I didn't want sympathy or attention, I just wanted to be treated normally.

I found out 1 in 10 women of reproductive age in the UK suffer from endometriosis. 10 percent of women worldwide have endometriosis—that's 176 million worldwide. The prevalence of endometriosis in women with infertility can be as high as to 30–50 percent.

The same amount of women suffer from diabetes as they do endometriosis. But only 20 percent of the public have heard of endometriosis, compared to 80 percent for diabetes.

(now I'm not slating the knowledge on diabetes before anyone comments on comparing. It's a figure of speech and I know the knowledge isn't on top marks for diabetes.)

This fumed me! So one evening before bed I thought, "Fuck it! I'm going to make an awareness post on social media about endometriosis and how I suffer with it."

This took a lot for me to do, considering I don't share what I'm feeling with anyone to then unleashing my current situation with the world.

The following morning, I had hundreds of messages from women all over the world thanking me. I was in complete and utter shock. I was speechless; it wasn't just me who was suffering from this horrendous illness. It made me so emotional knowing there are billions of women out there who feel exactly how I'm feeling.

I carried on raising awareness via social media and gained a following.

I didn't just help these women who are suffering in silence, but they helped me get through my dark place and gave me hope.

I now try to look at my situation with positivity. HOW?! Trust me, it isn't always easy. I mean, I didn't know I was going to wake up one day and never get better. I didn't know I was living with a long-term incurable invisible illness BUT you cannot let endometriosis take over your life; you cannot let endometriosis win this battle because it has the power to destroy you and stop your dreams!

You've got to find something in each day to reach, even if that's getting out of bed in the mornings when you're feeling drained and with no emotion towards anything.

One small positive thought in the morning can honestly change your whole day! A negative mind will never give you a positive life.

Life is tough, my darlings, but so are you. FIGHT.

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