Endometriosis VS Me

You never realise how lucky you are until you get chronically ill. The word chronic refers to ‘life-long’, just like the chronic condition called endometriosis.

It all started as a young girl, living my life to the fullest. I first got my period when I was 11 years old. Ever since that age I noticed something unusual, compared to the other girls my age. My periods were abnormally heavy, and extremely painful. So painful to the point that I would have to crouch down to the floor in tears. After many doctors visits of being told that this is ‘normal’, I had to live with this pain for many years. At the age of 16 I had my first serious relationship. This was also the age I lost my virginity. During my first time I had a lot of pain, which at the time I thought was normal as it was my first time. I also bled after it. Sadly, the pain was so bad that I didn’t have the interest to be sexually active that way with my partner. Still during being 16, 5 years now of having painful periods, very heavy and with blood clots, I carried on fighting even on my hardest days.

Years had passed, and several partners later I was still having abnormally painful sex. No matter the position, no matter what time of my cycle I was at. It was painful. As this was worrying me and affected many of my relationships, there wasn’t a month that passed without making several appointments at the doctors. After searching google as I still obsessively do, searching all my symptoms, I had come across something called endometriosis. At this point I had no clue what it was so I did my research on it. It explained all of the things that I was experiencing: The painful sex (also called Dyspareunia), the heavy and painful periods, the constant abdominal pains, irregular periods, brain fog, pain when emptying stools, bladder pains, difficulty getting pregnant, feeling sick, constipation or diarrhoea. I was scared at this point and obviously once again booked myself in at the doctors. I was so fed up of being pushed away by them with no answers and I was certain it wasn’t all in my head.

I think it was in 2018 when I was finally diagnosed with Endometriosis. This doctor had opened my eyes finally. Not only was I sad to find this out but also relieved that someone finally had the time to listen to me. He had said that what I have been previously told by the other doctors was completely bullshit. Shortly after this I was lucky enough to get a gynaecologist appointment. During this time, not knowingly that my endometriosis was progressing inside me, I kept living life as normal as I could. More doctor visits had passed and still no help from anyone. I was simply left in the dark after every doctors appointment.

On the 28th of October 2019, I had a contraceptive implant put into my arm. As I was told this would ‘ease my symptoms’. Little did I know it was just making things worse for me. Periods became irregular and had stopped for a few months and then there was also a stage where I had one heavy period for two weeks straight. I ended up in the emergency room because I was worried about my period and was in a lot of pain. They had given me my tranexamic acids to take which were supposed to reduce the amount I was bleeding. Due to the amount I was bleeding my whole body went into fatigue and I felt weak from bleeding that much. I had no energy at all. Two weeks later, after going to the hospital, I got an appointment to have an ultrasound and transvaginal scan done. This scan was scary for me because it was my first transvaginal scan. This is where they use a probe that looks at the inside of that area down there and looks at the ovaries, bladder, cervix, uterus, etc. Although I had to wait a good month or so for the results, the results had come back negative, meaning everything was fine, or so they thought...

I can’t even explain how I felt at this point receiving results that said nothing was wrong with me. I felt like I was inside this horrible nightmare. Many of you might think, “Oh but that’s good though,right?” no, Wrong. I knew it wasn’t all in my head, I had to get more answers about my condition. At this point I had never felt more alone in my life. My parents were just like these doctors, always saying there’s nothing wrong with me or being told that it was all in my head. I’d get lots of comments saying “You just have to be positive”, or “Try this diet, try running that will make you feel better!”. Not only was this disease belittling me, my own parents were too. I felt so powerless, so lonely. All I wanted was someone there to support me through this tough time, someone to be there for me. After all they are my parents right? Luckily my boyfriend supported me in ways no one else did. He is my bestest friend and my boyfriend.

Lots of tears later, I reached out to a friend a few years younger than me but someone who also suffers with Endometriosis. She had mentioned that there is a hospital nearby where they specialize in Endometriosis treatments. Luckily I got in contact with the place and am now currently still waiting on a referral. Endometriosis is a tricky disease because there is no known cure. The only things that doctors recommend is surgery or medication. Shortly after this, I joined an online support group on Facebook. I was amazed by the support and comments that people leave, it’s amazing! It’s crazy to see how many people struggle with the same things as me every day. It was interesting to see how I can relate to other people all around the world who are battling with the same illness as me. One of the groups have 40K plus members! However, it is also sad to see that all these people have been left in the dark, not just me.

This one lovely girl reached out to me, shortly after commenting on one of her posts on the group. She gave me the details to a private doctor who specialises in scans for people with conditions like endometriosis. Of course this had opened my eyes, and i booked in with her ASAP. I was lucky enough to get an appointment two weeks later! So whilst waiting for all my other referrals, I was waiting to attend my scan and was weirdly looking forward to it.

Those weeks had passed quickly and before I knew it I was already at my scan. It was a big moment for me as I was about to finally get some answers. All those years of endless pain, knowing barely anything but the name of my disease, the day of knowing and acceptance had arrived. After a very painful transvaginal scan, I had spoken to my doctor and finally she had said the words. “ So it’s visible that you have endometriosis. It has caused endometrial scarring on your womb, and some adhesions on your right ovary.” As soon as she said this I started crying my eyes out. I felt so overwhelmed and relieved but also so so sad. I finally heard someone say it. I wasn’t going crazy, and it wasn’t just in my head. The pain is really there and I can now prove that to all those people who never believed me. So now my endometriosis has a name haha. It is scary to know how serious it has become over those years, as it is a progressive disease. And to now still wait to see what will happen now, whether that’s surgery or medication. I have no clue what happens now. But this is where the journey begins...