I’m Chelsea, I’m twenty six and have just been discharged from hospital after my fifth Laparoscopy and Excision of Endometriosis. If you know me then you know I’m incredibly passionate when it comes to Endometriosis and the journey that it’s taken me on. I am one out of 190 Million women globally diagnosed with Endometriosis.
Unfortunately I’m one of the “lucky” ones who was diagnosed within two years of having symptoms because on average it can often take up to seven years of being in chronic pain to be diagnosed and get the answers we all search for.
Pain, anxiety and the constant battle to be taken seriously by medical professionals is sometimes a daily struggle. I’ve been told everything from “it’s all in your head” to “your case is one of the worst I’ve encountered in over twenty years in this field”.
Not only is there no fix all for Endometriosis but there is also so much misinformation spread online that unfortunately can affect and deeply root doubts in the minds of many people when it comes to advocating for themselves with doctors, nurses and other medical professionals. I have personally experienced how isolating this condition can be and I wanted to share my own experience because I think it’s important for those who are considering taking the next step in their own journeys to know they aren’t alone through this.
I first started experiencing symptoms in 2015, I went to the doctors and they told me that it was “just a bad period” and “all in my head”. I bled out every day for a year and was getting weekly blood tests, watching my iron and haemoglobin scores drop each week. I was paper pale, fainting and finding small tasks exhausting but still was not being taken seriously by my GP. One day I was feeling horrible and got a call saying I urgently needed to get to the hospital because my haemoglobin was down to 45 and taking an ambulance would waste too much time. On arrival I received multiple blood and iron transfusions and met with a gynaecological team who recommended an exploratory laparoscopy to see what was causing the blood loss and severe pain as the countless ultrasounds and MRI’s showed nothing remarkable.
I was told that without those transfusions I would have been hours away from dying. I went in for surgery and when I woke up I was told that I had stage 4 Endometriosis and the head gynaecologist who performed my surgery told me it was the worst case that she had seen in twenty years. I had a Mirena inserted to try to stabilise my body however after recovering I still was experiencing severe pain.
Two years later after constant continual testing I had my second surgery. My endometriosis was back and the cords of my Mirena were piercing through my uterus. Unfortunately they did not close one of the surgical cuts inside of me which led to me developing sepsis which nearly cost my life again. This threw me back into theatre which led to more Endometriosis being cut out and a week in the hospital.
I had my next surgery in 2021 after even more testing despite being diagnosed already, this was due to the increase in daily pain that I was experiencing. I decided to try to heal my body through healthy eating and exercise as I’d been recommended to do for years however the pain remained.
At the end of last year before Christmas I had another emergency surgery to remove more endometriosis and also a 100ml cyst that had been causing new levels of pain even for me. The recovery process had become second nature for me then so I went through the motions as I had before but again the pain continued.
9 days ago I had another surgery after 10 days of excruciating pain in the hospital. I truly have never been in so much pain in my life, and they had to borderline sedate me to just be able to do basic functions. Yet again they found endometriosis however it had stuck my ovaries to my uterus and my bowel together. There were many cysts ranging in sizes as well. I’m finally home, comfortable and healing from what was a dramatic few weeks and am yet again wondering what my next step is.
On this admission I had to advocate for myself and continuously vocalise my pain to doctors in the emergency department, gynaecologists and surgeons and unfortunately nurses in all areas of the hospital to take me seriously, even after a decade of having this condition. It got me thinking that there must be so many people around me going through similar things and not sharing them with the world.
I’ve always kept my social media focused on the positives and best parts of my life, not all of the moments I can’t get out of bed because the pain is too much, the events and catch ups I’ve made and had to cancel due to a flare up or the battles I’ve fought to advocate for myself. But they are there and continue to show up daily. I’ve realised that by not sharing those moments that I’m part of the problem because sometimes hiding being an #endowarrior lets down those looking to you for guidance and reassurance.
There is no book on how to handle your journey because unfortunately pain is a personal experience. However I wanted to share my story for the ones that feel like they are navigating this by themselves because I know if I had someone who had been through this a decade ago it would’ve changed the learning process my journey took me on.
I’ve been lucky to have my family and specifically my mother there through every admission and the ups and downs of Endometriosis. I know that this is likely not my last surgery, or my last battle to fight with my health, but I do know that I can handle anything life throws at me and only I get to decide how I handle it.
This time I’m choosing to handle my illness by viewing it as an opportunity to open up discussions even if it’s between you and yourself about your health, reaching out to me or by taking the next step and booking that appointment.
I don’t know if anyone will read any of this, but even if it makes a difference in one persons life then that means everything to me. I’m only a message away if you need to talk, cry or just feel heard because for a decade of my life I’ve longed for the same.
Don’t stop fighting, even if you win the battle because the war is still raging.
Xoxo Chelsea
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