Endo, oh endo, where do I begin? You have been crawling under my skin for the longest time possible.

At age 10, I began to spot. Nothing serious - just an early bloomer everyone thought. I was so embarrassed when I had my first bleed. My mom assured me it was nothing to be scared about. It's Mother Nature taking it’s course.

By age 14, my agony began. Intense pain, bloatedness, fatigue, headaches and extreme moodiness. I was told it's just normal teenage hormones. I shrugged it off until the agony increased, more and more painkillers and one hormonal contraceptive to another once my body got used to it.

It wasn't all bad - I had my good days with no complaints. Up to mischief that caused mom lots of headaches and heartache. I tried to do everything all at once for I knew when the pain strikes, I won't be able to do what others so easily do.

As the years went by, this ever consuming illness intensified. By age 16, I had been to every clinic and doctor in our small town. The pain got so severe, I started lashing out at everyone. Rebellion struck with a vengeance because no one understood the pain I endured from cycle to cycle, uninterrupted and misunderstood.

I started to question my sanity. Feelings of intense loneliness hit for I was young, where is this all coming from? From doctor to psychologist, I was just more and more misunderstood. Being told it's all in your head, that I'm uncontrollable, jumping between happy and sad. I sucked it up and tried to move on but endometriosis didn't want to be left alone. I was seeking for love and acceptance, someone to understand what I was dealing with, but with no diagnosis in sight, my call for help fell on dead ears with no solution in sight.

Went to college at 18 years, missed a few days class, saw another gynaecologist, was given another prescription to pop some other hormone concoction.

Fast forward to when I entered adult life, started to work but had to take more sick leave than I was actually at work.

22, turning 23, my pain peaked just before I got married. Had my first laparoscopy, just to nonchalantly hear: “You have endometriosis, but it's not severe”.




Hysteroscopy number 2.

Laparoscopy number 2.

And then the final big one: colon resection, where they found my insides were a huge mess! Uterus, rectum, colon - everything was fused together, even my tube looked funny, like stuffed sausages! Stage 4 endometriosis spread through my intestines. I have never cried so much of sheer pain, exhaustion, not being able to eat… But most of all, thankfulness that now at least someone figured out what was wrong and why I was misfit, not fitting in. It wasn't all in my head, I wasn't losing my mind, contrary to popular belief.

Had blood transfusions and started life over, learning to adapt to my new normal. I couldn't work, I couldn't eat. All I wanted was to sleep.

After 4 years of marriage, we headed straight to IVF, just to hear no, you need something more intense like ICSI. At age 27, I had my 1st embryo to transfer, just to lose that one a few weeks later. At age almost 28, another 2 embryos, maybe-babies, were transferred. Seeing those magical two lines on a pregnancy test - it’s phenomenal!

Then came the low, when I lost both of them. 1 found in my tube - ectopic pregnancy. I lost a part of me and my left tube too.

Now, here I am, almost 29. The agony I experience is still so intense. Now I struggle with daily pain in my right shoulder that intensifies every time I get my period, every 32 days stat. No doctor can make a connection, even after another surgery. That prompted me to start my own research… And I think I found my answer. Lucky me, it’s so rare, no one can figure it out. I show all the signs and symptoms of diaphragmatic endometriosis but no one is qualified here to have a look.

So my struggle continues with this hateful illness. My days are spent crying painful tears of lost dreams and hopes because of this damn illness. Doctors looking at me funny is a common thing. My tummy is a mess. The medicine isn't working no matter what they try. I'm in pain daily. It's felt everywhere. I am so tired of going to the doctor, hoping, praying someone or something will give me relief. I am tired to the core with disbelief. So until someone starts listening and figures this out, my life is filled with daily doubts. How will I survive this black tunnel with no light insight?

Endo I hate you, that I can't deny.

Thank you for sharing your story Anneeda.

If you would like to contact Anneeda, you can follow her on Twitter @anneeda_pekeur.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.