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Me Myself And Endo

This piece has been 2 years in the making. Not because of its word count, but because of its content. Writing this has been both cathartic and wearing, during my worst and best days.

Normal is such a foreign concept to me. What is normal? How do you define it? Its definitely not something I’ve ever felt, but it is something I’ve always wanted.

It never really occurred to me that there may be an explanation for the way I was feeling, and that there may be something going on internally. I had been to the doctors a few times for period pain but everyone gets period pain right? And how do you define your level of pain when it’s all you’ve ever known. It wasn’t until my mum suggested that I see a gynaecologist that I started to really think about my symptoms and what they might mean. Painful periods, fatigue, severe acne, dyspareunia, frequent UTI’s, and ovulation pain to name a few.

I was always exhausted, frequently sick, and like clockwork curled up in the foetal position every month. I was forever trying to keep up with everyone around me, partying all night from the age of 14 and putting all sorts into my body. I guess just trying to feel “normal” I remember falling asleep in class a lot, always waking up thinking how am I so weak?

Bang on that time every month, I would get knocked down with agonising cramps in my abdomen. Sometimes they would wake me in the night and others they would appear as if out of nowhere during my day to day. The pain would travel down my legs, into my toes, and on occasion I would start vomiting. Once I even blacked out from the pain. My lower back would seize up for days and every bowel movement during this time would be excruciating.

I was almost 3 years into working full time after finishing high school, when I took my Mum’s advice and referred myself to a gynaecologist. My younger sister was about to see the same practitioner (for the exact same symptoms), during my first appointment, the Gyno took one look at me and said “when do you want your surgery?”.
I had always known my mum had had endo and in hindsight I don’t really know what stopped me from taking my health into my own hands sooner. Maybe it was the lack of education about the disease. Maybe it was the fear of leaving another doctors office with nothing more than a prescription for pain killers. Maybe it was the fear of diagnosis?

I had a laparoscopy 6 weeks after first visiting the Gyno, and this surgery was a long and painful 10 years after my symptoms first began. This was a time in my life I will never forget. I was diagnosed with stage 4 endometriosis just moments after waking from surgery and was also informed that my appendix had been removed due to inflammation from the disease.

It was also at this time that I decided to doing something serious about my skin. I had always had bad acne but at this point I was suffering immensely. My face was red, swollen, and covered in cysts that seemed to never go away. I saw a skin specialist after putting it off for many years, and despite the horrendous list of side effects, I decided to give the drug “Acutane” a go. This for me was like a wonder drug. It was everything I had ever hoped for and more. My skin started to clear up and my confidence started to rise. I know it sounds superficial but for a teenager struggling with their appearance, clear skin really can make a world of difference.
However, the side effects did start to hit, first smacking me with bleeding noses, dry eyes, chapped lips, flaky skin, and more. Actually, come to think of it, I was sucked dry of EVERYTHING (if you get what I mean). Every bowel movement came at a cost, and I ended up having to lower my dose to the minimum and take laxatives for the remainder of my treatment. I know you’re probably thinking why put yourself through all this pain just for clear skin? The truth is, despite all the side effects, I actually felt better. I have an amazing, supportive partner who always told me I was beautiful no matter what but, it’s another world to actually feel that way.

After my surgery I was advised to make some serious changes in my life. There is no cure for endo, but there is the belief that there are ways to manage the disease and its symptoms, and that is something I will be working on forever. I started taking an array of vitamins recommended by my gynaecologist – omega3, magnesium, vitamin B, vitamin D and “skin clear tablets”. To tell you the truth, I have barely had a cold since! I started making a conscious effort to eat as much organic produce as possible, and drastically cut down on my sugar intake. I made a conscious effort to exercise more, and was advised to leave me job which “may be causing increased stress”. This wasn’t something I was prepared to do, however I did then make a conscious effort to work towards a healthier work life balance.

Endometriosis is a chronic disease where tissue that normally grows inside the uterus grows outside the uterus. This tissue begins to breakdown and can cause painful adhesions or scar tissue. The escaped tissue responds to hormones by thickening, and it may bleed every month. But because the escaped tissue is growing in other tissues, the blood it produces can not escape. This creates irritation of the surrounding tissue which causes cysts, scars, and other body tissues to fuse together. Symptoms can include painful periods, pelvic or belly pain, severe cramps, abnormal or heavy bleeding during periods, backache, leg pain, pain during sex, painful bowel movements, and infertility (to name a few).

I can relate to all of the above symptoms, and thinking back in time, I don’t know why I didn’t take my health into my own hands sooner. This is a disease that will effect women just as much emotionally as it does physically. I can’t imagine that anyone suffering from this disease hasn’t experienced a level of depression. I have been to the lowest level and that is not a place I want to go back to anytime soon.
If you’re still reading, here’s my advice; celebrate every good day. Celebrate every good day you feel healthy and free. Don’t fear the pain that may or may not come. A big one and arguably the most important; talk.
Talk about your symptoms and how you are feeling to anyone who lends a worthy ear. The more you talk about it, the more people can begin to understand. And with understanding comes support, compassion, and every now and then, empathy. And please remember, health is a forever journey so keep reading, questioning, and most importantly an open mind.
I am currently 5 years post surgery and to be honest, I’ve had a pretty good run these last few years. My pain has lessened, and to this day I still have a more holistic approach to living with this disease. Although, I have been suffering from chronic back pain for the last 12 months and whether this is related to my endo or not, even the specialists are still unsure. I have come to accept that although this is the way things are for now, they won’t always be this way. I am fortunate enough to work for a business that has gone above and beyond in supporting me and my disease, and for that I will be forever grateful. Don’t be afraid to let your workplace in. The more we start to talk about it, the more everyone can begin to understand.

Although this is not the end, I am writing this in the hope that someone reading this will be able to relate, and that someone reading this will know that they are not alone.

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