When I was 20, I mostly thought about fashion, my friends, and what I was going to do with the rest of my life.
When I was 20, the last things I ever thought about were my period, my fertility and having babies.
Sure, I had always had extremely painful periods, that sometimes made me vomit or pass out and often left me bed-ridden, but I thought that was normal. I also knew I wanted children, but I always thought that I had plenty of time for motherhood.
At the time I hadn’t been diagnosed with stage four endometriosis, so I had no clue that my fertility clock was ticking every period or that my period was causing irreversible damage to my reproductive organs.
Now that I’m 28 – and after a long struggle with my reproductive health have fallen pregnant (scary but so so exciting at the same time) – the first thing on my mind is ‘I wish I was educated about endometriosis when I was 20’.
Endometriosis (or endo) is an incurable disease where the lining of your uterus grows outside of your uterus. The severity of endo is measured on scale of one to four. Commonly, women have endo scarring in places close to their uterus like their fallopian tubes or bowel. When you have stage four endo it means not only is your scarring deep and severe, but also in places well away from your uterus; in my case I have scarring all the way up into my respiratory tract.
Endo is debilitating, excruciatingly painful, but most of all an extremely misunderstood disease.
Most people, both men and women, don’t understand how it affects your day-to-day life, especially when you call in sick to work because you have “period pain”. I can’t count the amount of times throughout my life that people thought I was being a drama queen because I couldn’t do something due to that time of the month.
“Thank you Lena Dunham, for being so honest about endometriosis”: Lena Dunham spoke about her endometriosis and the effects it has on her ability to carry children. Why isn’t it spoken about more often? Post continues after audio.
In fact, it took some of my friends a while to really comprehend just how dangerous endo can be. By the time I was getting emergency surgeries, and explaining I might never fall pregnant, people got the idea.
Where it all began
I discovered I had endo after I had surgery to remove an 8cm cyst from my right ovary in October, 2014. I had struggled with painful periods for almost 10 years at this point and my GP was reluctant to even give me a referral to see a specialist because ‘everyone gets period pain’.
It was a relief to have a diagnosis explaining why I had constant pain ALL month long. Although I had no clue about what this disease meant, I could finally tell people I wasn’t crazy and there was actually something wrong with me.
In March of 2017 I had a second 8cm cyst burst in my left ovary. This changed everything for me. It was the most excruciating pain I have ever felt in my whole life – like toxins being poured into my blood stream and body. Doctors explained an earlier diagnosis in my twenties would have resulted in less complications.
We tried to deal with this uncontrollable cyst non-surgically at first, with hormones that made me go into menopause – even though I was only 27. Instead of these drugs fixing the situation they made my cyst grow to 14cm. I went straight into emergency surgery in July and I missed out on an amazing trip to Greece with my new fiancé, Georgio.
When I woke up, I was told that not only was this cyst so bad that my left ovary had to be removed, but I had such extreme scarring on my fallopian tubes that they had to take be taken out as well.
I learned I would never be able to fall pregnant naturally. This was a lot to take in.
After some processing, researching and a lot of encouragement from Georgio, we decided that we wanted a family – so we had to figure out a way to make it happen.
Georgio has been my rock through everything, despite the strain that my health issues put on our relationship and sex life. I’m not going to lie, when I found out I had lost my ovary and fallopian tubes I was sort of ready to throw in the towel on the whole baby thing. I was devastated and thought it would never happen for me.
Georgio was the complete opposite. He has always told me that we were going to fall pregnant, full stop. He wasn’t naive by thinking it would be easy – but we put a strong plan in place and we were going to work our butts off and be positive until we reached our goal. Yiota, who also suffers with endo, had just announced her pregnancy around that time too, so she was my source of hope.
We plunged into the world of IVF and what an experience that was. Acne, weight gain, irritability, moodiness, migraines, name any other symptom you can get from artificial hormones and I pretty much had it! Our first IVF harvest we got six eggs. If I had done this when I was 20 I would have gotten around 20 eggs.
I had to go through two full rounds of back to back IVF. The second round I injected myself over 60 times! The second round of IVF was less successful in terms of eggs retrieved, however from the one and only embryo we created – it stuck.
After 12 hard months of struggling with so many ups and downs, I am pregnant and in my second trimester.
I have a miracle in my belly. I can’t believe this baby chose to stick in a womb full of disease and scarring. I can’t deny that this baby is very special but my life would have been different if I had just been diagnosed with endo sooner.
I believe that you can’t just say ‘I have something wrong with me’ and expect your situation to change. You have to positively put things into action to get results and take control of your health. So many people just stand up and SAY they have problems but don’t try to FIX anything. Awareness is great, but at the end of the day actions are better. I’m lucky that I had the resources and finances available to allow my dream of becoming a mother to become true.
Now more than ever, and being pregnant, I want to explain to other women that if you want to see a change you have to make it.
If you’re 20, 30, or whatever age and you think something is wrong with your reproductive health, don’t be afraid to tell people… but also don’t be afraid to go out and do something about it! You can start simply by having a conversation with your partner, your mum, you best friend or a trained professional and from there, figure out your next steps. The journey seems too overwhelming until you start.
Every endometriosis journey is different, and no body is the same but I know from experience YOUR body will benefit if you action steps to tackle this disease.
So from one #endowarrier to another; if you want to see a change, start now.