I think it’s very difficult to explain what Endometriosis is and how it impacts people as everyone is different. So this is completely my account.
Before I had my diagnosis life was difficult, but without knowing there was anything wrong with me I always found a way to power through. For years the nausea and vomiting was my biggest issue, but I always pushed through. Pain was another obstacle, but for most of my life pain was never constant. I was very active before pain ruled my life and most weekends consisted of hiking for hours on end and most days ended in the gym resistance training.
Fast forward to summer 2018, pain had become a daily occurrence and something I was struggling with. My left ovary always seemed to constantly be in pain and my pain levels were pushed to new highs. I was stressed, I had ALOT going on in my life… I was awaiting a laparoscopy privately but the pain was just getting too much.
I remember one day my husband was driving and I had a stabbing pain around my left ovary, these pains (as deeply intensifying as they were) , had become a common occurrence, and it was usual for me to show some discomfort. What was not normal was for me to begin to scream uncontrollably because of the pain, or for my husband to have to stop the car and for me to walk hunched over at the side of the road crying and screaming in agony. The pain was a solid 15/10 and I should have gone to hospital, I should have fought for pain medication, I shouldn’t have let it slide. But I didn’t, I knew surgery was coming up, I’d signed a sheet of paper to say I’d potentially loose my left ovary… What could a trip to hospital have achieved (I should have gone to A&E, don’t be as ignorant as me, go if you need to!).
My mum’s health had seriously deteoriated around this time and she needed round the clock care. I didn’t have the time to think about anything else, let alone spend it in a hospital. It was the last place I wanted to be.
I’d lost my normal life long before surgery, I’d reduced walking, (something I love) because every time my hip moved… My ovaries would hurt. Walking amongst nature was my biggest stress reliever and at the time when I was most stressed, I was struggling to do what I wanted and needed. I was the most stressed out I have ever been, and for years I’ve lived with high levels of stress.
In August 2018, my mums heoric fight came to an end and my whole entire world shattered around me. Nothing can ever prepare you for loosing a parent, nothing. I was lost and heartbroken to say the very least, and I always will be but then I had another mammoth thing to contend with… My surgery.
In reflection, I never should have got surgery two days before my mum’s funeral…but some of my mum’s last words were to not cancel my operation, and to promise her I would see whatever this was through to the end. We both knew it was likely to be Endometriosis and I was never one to break a promise, especially with my mum. And so I went ahead with the operation, and sure enough was diagnosed with Endometriosis. 7 and a half years after my first operation (which apprently had shown nothing)! My womb was stuck to my bowel on my left side, and Endometriosis was found in numerous places on my right side. I was told the surgery had been a success and I was released from hospital less than 24 hours before the funeral.
Talk about emotional!
I knew how proud my mum would have been, that I’d seen this through, got a diagnosis and was able to show some of her strength and resilience. I knew I had to keep my promise and that surely now, things couldn’t get any worse.
My recovery wasn’t straight forward (it was a double wack, loosing my mum and having to recover from surgery), after my surgical pains passed… I quickly recognised the same pain in my left side… Yet it’d come back with a vengeance! The pain didn’t leave, the pain only ever got worse, as did the bloating. I thought for while this was normal and perhaps it was just internal healing or scar tissue and so I tried to get back into my normal life and full time work.
I sure tried my hardest, I gave it my absolute all! Little by little my life began to change, I was in constant pain, constantly. I was exhausted all of the time, I was introduced to chronic fatigue… It came and never left. I found that by lunch time each day, I was out of energy… I was completely done in. I had to push myself through each day and by home time I was ready for bed. But the pain just wouldn’t rest it was relentless. Meaning I couldn’t rest and the painsomnia (pain induced insomnia) helped fuel the exhaustion and fatigue that awaited each new day.
I tried to rest up and then venture amongst nature, but the pain would only heighten and I’d be crying bent over within half an hour.
I disagreed with my follow up appointments ‘recommendations‘ and sought a second opinion, quickly. The pain had stolen my quality of life, the last surgery had heightened everything for the worse. Another operation (corrective surgery) was agreed and arranged with a specialist, and in the weeks that followed I became weaker and weaker as the pain made most aspects of my life limiting.
I had my third Laparoscopy, second one in six months, at the end of February 2019. Endometriosis was found deep routed in numerous places, all over my left and right side, it was found in places I was told it couldn’t be. I was diagnosed with Diaphragmatic Endometriosis, explaining pains around my rib cage, something that couldn’t be touched during the surgery. Recovery again has been difficult, I have scars on top of scars that have only been there a few months, I have internal healing still on going and I still have pain quite regularly, daily. Although, the pain is slowly getting a little better. I now can’t leave the house without a walking stick, at 28, this is not something I could have imagined for myself. It’s taken alot for me to admit I need some support, but the fact of the matter is I do. Pain can strike at any moment, and I have potential nerve damage running down my left hip and leg.
Life is still exhausting, its still filled with an invisable illness that tortures me, daily. The illness has made its way into a space that means I’m in a tiny percentile of women with this condition and the constant pain acts as a constant reminder. I feel fatigue after doing very little, I feel fatigue when I wake up and it still continues. I’m learning that this is a life sentence, the chronic illness won’t ever leave me, there is no cure… But there are ways of coping, ways with dealing and ways for growing. Day by day I’m doing all of these things, and I’m so much stronger than I sometimes let myself believe.
My mum taught me all about mind over matter, she taught me the power of positivity and now I just try and put those into daily practice. Life is different from here on out, it’s about being less harsh on myself and realising every single day I fight through is a huge triumph.
I’ll always have Endometriosis and whilst it dictates alot of my life, I am not my illness; it does not define me💛