Becoming an Endo Warrior with Megan Dunkley
By Megan Dunkley
Can you imagine getting your monthly period but having it last for 3 to 6 months on end? Being completely bed ridden the entire time in horrific pain, when no pain relief can take the pain away? Feeling intense stabbing pains and contractions in your uterus every period or any day of the week? Constantly. No warning, you can have a flare up at any time. This is what living with Endometriosis is like.
Endometriosis affects 1 in 9 people assigned female at birth. Endometriosis is an inflammatory condition which causes chronic pain for many people around the world, this can go undiagnosed for many years or even for life for some. Endometriosis can go undiagnosed for many years as many doctors have little to no knowledge on this disease, which can see sufferers in years to come with a hysterectomy (still not a cure!) or experiencing fertility problems, perhaps not being able to have children. I am 1 in 9, hearing from my doctors that eventually I may need to have my uterus removed because of the damage endometriosis has done. Or unable to have children or needing to have numerous of excision surgeries to remove Endometriosis. It’s scary and it can cause serious mental stress on young people when trying to handle it all.
I am speaking out about my story in the hopes that it can help one other person - someone trying to get pregnant and hasn’t had any luck yet, someone in pain, someone who doesn’t know what’s wrong, but knows there’s something wrong. There is absolutely no cure for this disease, which probably is the hardest thing to hear – that no matter what we do it will ALWAYS be with you, and can grow back.
Endometriosis can go completely unnoticed if people do not experience pain, the only reason some find out if they do not experience pain is with an extremely heavy flow or inability to conceive. My journey started when I was 14 years old experiencing horrifically painful periods, though even before this I had pain. Whenever I got a period, I would be crippled in bed with excruciating stomach and back pains. I would be so sick from the pain that I would get nausea and even in some cases be physically sick. This happened every damn period, time after time. Alongside Endometriosis I also have Anxiety, brought about due to the uncertainty of the continual pain, not knowing a real diagnosis for so long and always stressing about when I was going to get my next period – or if it would ever go. This caused a dangerous cycle for my mental health, I now can stand proud and wear the scars on my sleeve openly tell other people “It’s okay” “I have been where you are, it will get better”.
I started off getting insanely bad periods from the age of 12, I would not be able to function at all, I experienced the most insane cramping, vomiting, nausea and a whole lot of blood. Endometriosis flare ups can cause insane bloating and because of this your belly can be become rock hard from the inflammation build up. When these flare ups occur, they can make someone look up to 6 months pregnant. I missed out on school and crucial social activities due to the amount of pain and bloating I was experiencing. It was extremely hard at times as this disease is more so on the inside, so while I didn’t look ‘sick’ I felt incredibly sick. It took years for me to convince a doctor to take my symptoms seriously.
For many years I just thought this was normal as I went to a few doctors until I started to see a female doctor that wanted to help and actually listened to my symptoms. Then I got referred to the same Gynaecologist as the one who delivered me 23 years ago. Their first response was to put me on the pill constantly, by stopping my body from having a period. From the age of 14 I was on the pill constantly without ever having a “break” however it wasn’t always smooth sailing. I went through probably 5-6 different pills and I had break through bleeds when I least expected it. The idea of a Laparoscopy did come across at this point to see if I did indeed have endometriosis. At this stage, I decided to not go through with the surgery as the idea of needing to have more than one had scared me. Looking back now, I should’ve gotten that surgery done then as no matter how many pill packets I went through and different brands, the more my period broke through the more I became anxious.
I managed from the age of 14 to the age of 23, to be on the pill constantly despite my many different brands, I found Normin 1 was the most consistent and seemed to slow down my symptoms massively. Although I was taking the pill there would be many days when I would unexpectedly be in huge amounts of pain, curled up in a ball or vomiting from the most intense pain. I would have a period for months straight whilst taking the pill. I would be terrified each day while at work or at school if I was getting my period because of the most horrific stomach cramps, back pain and feeling of a heavy bleed instantly. It affected many relationships that I had built because I wasn’t sure what was going on. I become so anxious to the point where I needed to be put on medication to help with my anxious moods, all because of being undiagnosed. I started to be unsure of who I was because finding answers to why I was in so much pain constantly, just never happened. I became depressed because every single time I would bleed – no matter if I JUST had a period. Time after time, it started to creep up on me. It was depressing to continually see my body bleed and be in so much agony, missing out on what I loved the most. It hurt.
This disease can stop people from being able to function like a normal human being, it can stop them from going to work or doing the things that they love. This was the hardest for me, I have tried multiple avenues to just learn to live with it. I am a very active person, I compete in CrossFit which means I train multiple times per day, I eat healthy and measured, I also work full-time and studied at University. I missed out on days of school, work, uni and many social activities due to the amount of pain that I was in. When you’re so passionate about something, it’s so hard to be functioning like a “normal” human being one day and then the next day, be completely bed ridden.
Many people know hardly anything about Endometriosis, which is what makes this a bigger issue. There is no cure for this disease, however with proper research and education the world will be a better place. Many people do not know the amount of pain someone is in unless you are in their shoes, heroes are real. The ones that show up to life even while living with chronic pain. I have reached out to many women around the world that have Endometriosis, to just know that everything I felt all those years ago and now is felt by others – it’s a surreal feeling. This is the reason why I’m speaking out about my journey, yes it did take me a whole of 9 years to get an ‘official’ diagnosis but the more that people like myself, stand up and speak about it. It can trigger other people to start examining their periods, the pains they get and bloating etc.
I am proud to be standing here, sharing my story of Endometriosis. I am not ashamed that I have anxiety because of this disease, many people all around the world are most likely going through the same thing. As mentioned, at 23 almost 24 years of age – all my “unanswered” questions and reasoning behind all my pain was finally answered. It was a tough 9 years in limbo thinking I was making it all up, but I really wasn’t, so many doctors can easily dismiss you – you have to be persistent.
I want everyone to know that having a Laparoscopy surgery is beyond worth it, this is the ONLY way they can definitively diagnose Endometriosis. Excision surgery is the gold standard. The earlier you discover this disease the faster you can learn ways to live with it. Endometriosis can be found anywhere in the body, not just the pelvis. After this surgery, I was diagnosed with Stage 1 endometriosis, there are 4 stages of this disease. Amount of pain does not correlate with amount of disease, I have only stage one, but I’ve experienced horrific pain. This disease isn’t “one size fits all” as it can be silent – meaning some people can go completely unnoticed having Endometriosis until it’s too late and they struggle to have kids. During my surgery, they did remove endometriosis on my right ovary and also discovered it was growing on my organs. This means I may require another surgery later down the track, excision surgery done well can be life changing, but it does not mean that endo won’t ever grow back or that your endo is “cured”. The risk of having trouble conceiving is very real with Endometriosis, which is something many of us find hard to hear.
This fear of potentially not being able to have a family of my own furthered my anxiety and depression. I spent years researching on Endometriosis and trying to find some answers, exploring the role of diet and exercise. Exercising can also be a huge factor, it certainly has benefits, which works in my favour competing in CrossFit. However, you have to be smart on the ways that you train and to learn that during ‘endo flare ups’ training may be a big no no. Post-surgery, I have gone completely gluten and dairy-free, I have noticed a huge difference in my endometriosis flare ups and the regularity of them, they have decreased. While yes, I still do have them but they are nowhere near as often or as prolonged as what they once were.
People with endometriosis can be scared to have a period, as the amount of pain they experience can be beyond intense. Endometriosis is still so unknown to many people in society and I’m standing up alongside other people to be a voice to share what we experience. I want to limit another person going through 9 years of undiagnosed hell and confusion. If by sharing my story I can help another endometriosis warrior start a family by getting it looked at early or getting young people to start looking into their heavy periods or insane period cramps - I’ve done something for the Endometriosis community.
While I wish I didn’t have Endometriosis, I am glad that I have found it early enough and to be able to alter my life to live with it and not let it control me as much as it once did. I can now finally find things that work alongside reducing the symptoms I experience. I have found the strength to share my endometriosis story, which to me is something so powerful. I never want another young person to go through 9 years of undiagnosed limbo, it was hell. By being an advocate for this disease I am actively working towards living out this goal.
You can follow Megan on Instagram here.
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