“Endometriosis is when tissue that is similar (not the same as the endometrium) to the lining of your uterus is found outside on other pelvic organs or any other organ in the human body. (It has now officially been found everywhere in the human body.) It reacts to hormones that power the menstrual cycle. This causes the endometriosis to bleed, which causes severe inflammation to the tissues surrounding it, causing severe pain and further growth of the endometriosis.
I remember my first period so well, like it was only yesterday, I remember waking up to the surprise and pain, wondering what was going on inside my little body at only 11 years old. My mother congratulated me, reassuring me it was normal and it was my first step into womanhood. I was told menstruation would be painful but not unbearable, and I would have to use sanitary products such as pads or tampons for maybe a week at a time. She assured me it would not disrupt my daily life and it would get easier once my body settled into its natural cycles. Little did I know, a storm was brewing on my insides. All hell was waiting to break loose, waiting to attack at any given moment. It was a battle of a lifetime waiting to begin.
By the time I was 14 years old, I was dreading my period every single month. The pain was so debilitating I often would vomit with the pain, even after taking the painkillers that would usually help with period pains. I could not leave the house in fear I would leak through my clothes. Every day was almost like a blood bath, from the time I woke up to the time I went to sleep. One month, in particular, was the turning point for me. I remember being woke from my sleep early in the morning with debilitating pain. I took some painkillers but only managed to keep them down for about 20 minutes until I vomited again with the pain. I had to crawl outside onto my front porch to get some fresh air while cradling myself in the fetal position to try and cope with the pain. This was when I knew my painful periods were not normal and I needed medical attention. This was when I started my 5-year journey to get my endometriosis diagnosis. My mom called the local doctor, ‘My daughter needs help immediately, she can’t stand the pain. I think there is something seriously wrong. She’s vomiting everywhere and crying uncontrollably.’
My local doctor tried to convince me I would grow out of painful periods and told me on several occasions, ‘It’s very normal for young teenage girls to experience painful menstrual periods. You just have to learn to manage it effectively and try to get on with your day-to-day tasks.’ This infuriated my mother and me because we knew deep down something else was wrong. How could this be normal for every teenage girl to go through? After months of pleading with the doctor, I was eventually referred to a gynecologist for some further testing and scans. I finally felt like this issue was going to be resolved, but unfortunately, it was only the beginning.
In the meantime, I noticed several symptoms were starting to appear throughout my entire menstrual cycle, such as painful ovulation, severe constipation, painful bowel movements, pelvic and back pain all throughout the month, nausea, and constant fatigue. By the time I saw the gynecologist, I was nearly 16 years old because of long waiting lists in my country. After several clear scans, normal blood work, and routine examinations, she decided to put me on the contraceptive pill, putting all my symptoms and pain down to hormonal imbalances as a young teenager.
Approximately 9 months went by and things went from bad to worse. If anything, the contraceptive pill only heightened all my symptoms and did not help with my menstrual cycles at all. At this time, I was studying really hard for exams in my school so I could continue on to University to study Midwifery. The constant pain had me bedridden for days at a time, meaning I missed valuable time in the classroom. I felt utterly defeated by my body that just couldn’t seem to function properly anymore. All I wanted was to do well in my education but even that was becoming an impossible task with how much pain I was constantly in.
After nearly a full year of chopping and changing different contraceptive pills, my condition had not improved. The gynecologist decided it was time to try a different approach and decided to have a look inside my uterus and insert the Mirena coil to try and tackle my heavy, painful periods. I remember briefly when I woke up from the procedure, she had commented, ‘You most likely had a condition called endometriosis,’ but that was it. Nothing further was investigated to see if I did have endometriosis. She never even explained what endometriosis was, she just sent me on my way hoping the Mirena coil would sort all my problems.
At the time, I did not question the gynecologist’s decision. I didn’t push to get the diagnosis of endometriosis because I wasn’t educated about the illness. It was the first time I had ever heard the word! The only further information I got about the illness was a small patient leaflet that was handed to my mother when I was discharged later that day.
A year and a half went by and I was feeling the benefits of the Mirena coil. I no longer had heavy periods, the pain was manageable, and I was doing well in my education. I felt like I had a new lease on life! My exams went well, my University application had been submitted, and I was enjoying life to the fullest before the summer was over and I had to face the reality of moving away for University. When I received my offer for my midwifery place at University, I couldn’t quite believe it. Words cannot describe how much joy I felt at that moment. Finally, all the hard work had paid off for me! The only downside to this amazing time in my life was my pain and symptoms had started to creep back into my life slowly. It started off as minor pain in my pelvic area maybe once a week at the most, but by the time I had moved away for University and started my lectures, it was starting to become a dull aching pain all over my pelvic region, back, and extended into the back of my upper thighs.
I knew straight away something wasn’t right and booked myself back into the gynecologist. She said nothing was wrong and my symptoms and pain were more psychological than physical. In simple terms, she was trying to insinuate the pain was all in my head. The rest of her team thought otherwise. They realized how much pain I was in when they examined my pelvic area. They could see the emotion in my eyes when I pleaded with them, they saw the tears fall from my eyes when the consultant left the room after discussing her opinion. The team had a discussion with the consultant, which led to the decision to do an explorative laparoscopy. The consultant assured me nothing would be found and it was for my peace of mind. I was booked in for the 24th of January 2020.
Looking back, it was one of the most emotional days I have experienced so far in my lifetime. I was anxious from the time we checked in until the time I went down to the operating theatre. The hardest part was right before they put me to sleep because I knew the next time I would be awake, I would either have a diagnosis or be looked at as a ‘crazy person’ who is imagining all this pain in her head. When I was coming around from the anesthesia I remember hearing the consultant briefly handing over to the nursing team about her findings, hearing the words endometriosis, left side of uterus, and bowels was enough for my heart to start racing. I didn’t know if I was feeling panic or relief because yes, having a diagnosis of endometriosis was a relief but having that diagnosis potentially meant my fertility could be affected in the future. One of my biggest fears in life is not being able to have my own biological children so you can see why the panic had started to settle in.
When the consultant came around to see me a few hours later, she confirmed I did, in fact, have stage 2 endometriosis and the pain was not all in my head. She apologized for not validating my pain earlier and explained I had been referred to a specialist surgeon in another hospital because she could not remove the endometriosis because of its location. ‘Lauren I have to apologize. The pain was not in your head you have stage 2 endometriosis covering the left side of your uterus, Pouch of Douglas, and I’m nearly positive on your large bowel, we need to refer you for specialized surgery. I’m sorry I dismissed your pain.’ In that moment, tears just flooded my eyes. I was so happy to finally understand what was happening inside my body but also so afraid of the potential effects this chronic illness could have on my fertility and my body.
It took me a few months to properly understand my diagnosis and to educate myself properly about endometriosis. I started up my own Instagram page dedicated to my endometriosis journey so I could learn more about the illness and spread more awareness about endometriosis. 1 in 10 people suffer from the illness worldwide, which is approximately 200 million, yet not many people understand or know about the condition at all. Unfortunately, my journey has not been an easy one and continues to challenge me every single day, I am awaiting my next surgery to hopefully excise and remove the endometriosis on my bowel and uterus. Covid-19 has delayed my surgery for months now and I really am not getting any better. My flare-ups are more frequent, the pain is spreading, and my symptoms are becoming worse the longer I go without this surgery.
I continue to fight my battle every day while also trying to maintain a normal lifestyle. I continue to work part-time, attend my midwifery placement in university hospitals, study my lecture materials, and have a decent social life when possible. What people do not understand is I wake up in pain every single day but I still keep going. I may wear the brightest smile in the room or laugh and joke about things but I assure you, I am still suffering from the pain and symptoms my endometriosis comes along with. Life doesn’t stand still for anyone, even for people with chronic illnesses, so I try my best to keep going and to not let my endometriosis define my path in life! Just because you cannot see my illness on the outside does not mean it is not there on the inside. You learn to live and to carry pain well when you are diagnosed with a long-term chronic illness like endometriosis.
After being diagnosed with endometriosis, my perspective and goals in life have changed completely. My main goal in life is to now be the best advocate for endometriosis I can be. I want to spread as much awareness as possible so I can save future generations from suffering and going through all the pain I had to endure for years. Please remember painful and heavy periods that disrupt your everyday life are not normal and should be investigated. You should be able to enjoy life and not have to dread every single month because of pain and suffering.
My advice to anyone who thinks they may be suffering from endometriosis but does not know how or where to get a diagnosis is to simply keep fighting, fight for your health, and for your diagnosis— no matter how many times medical professionals disregard your pain or medically gaslight you keep fighting. If you push hard enough, I promise you, you will get a diagnosis eventually. You know your own body and you know when something is not normal.”
This story was submitted to Love What Matters by Lauren. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
Read more stories by Endo Warriors here:
‘Ugh, you can have my kids. Just relax and it’ll happen.’ My journey ended with a hysterectomy.’: Woman diagnosed with Endometriosis after years of infertility, finally finds peace in a ‘beautiful, unexpectedly child-free life’
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