It was 2014, my first period at age 11, it started light but as the next few months went on things changed. I would find myself bringing stick-on heat packs to school and wearing them constantly during my period. I always needed to buy super pads as my flow was constantly heavy even on Day 7. No painkillers could ever do the job for me, not even to lighten that dull aching pain that just would never go away. Little did I know this wasn’t normal.
Later on that year, I was prescribed the pill called Norethisterone (progestin-only birth control) to help with supposed acne. Two weeks later I found myself in the bathroom feeling like vomiting and not being able to walk properly due to a killer migraine. I stopped the pill straight away.
4 years go by and I find myself yet again being prescribed birth control, the contraceptive implant. My next cycle I found myself bleeding 80% of the time, sometimes bleeding for three weeks in a row causing me to be constantly low on energy and in pain. I kept using the implant for 2 years despite the horrific side effects and being told it should help with bleeding.
5 years fly by and I’m starting to experience lower back pain. And I don’t mean just a dull ache. The pain I was experiencing was a constant pull feeling, often accompanied by a constant throb and tightness in my right hip. Most times when I would experience this pain I would feel tingling in my feet and a sharp stab down my leg which felt like from only what I could associate it with was sciatic pain.
It got to a point where the pain became unbearable and I found myself lying in bed at any time of the month not being able to move. One day I had enough of the pain, I couldn’t cope any longer and decided it was time to see a doctor.
As I sat down waiting for my general GP, I was hopeful that they could sort something out for this pain I was experiencing. I didn’t know anything of Endometriosis at this point. So I believed what I was experiencing was a bulging disc in my lower back. After explaining my symptoms to my doctor, I was asked to bend over so the doctor could check my spine for any abnormal features. As he worked his way down my spine he pressed right into where I was experiencing my pain making it 10 times worse. I ended up leaving that appointment with a painful hip, “non-necessary referral,” for a scan and a prescription for general painkillers. Soon after my results for my spinal scan came back with nothing.
Around six months went by and during that time I saw somewhere that there's a thing called PCOS. Symptoms include heavy, long, intermittent, unpredictable or absent periods, infertility, acne or oily skin, excessive hair on the face or body, male-pattern baldness or hair thinning, and weight gain, especially around the belly. Sitting there looking at the symptoms I ticked heavy periods, long periods, acne, oily skin and excessive hair growth on the body. It was at that point I knew needed to go to the doctor again.
On the day of my second visit with my doctor regarding PCOS, they referred me to get a scan at the local public hospital. Going in I was nervous but hopeful that maybe just maybe something would be found. Everything went well and a few weeks later I found myself looking at the results once again at the doctor.
My results read, "No myometrial abnormality. There is a small linear echogenic focus at the fundal endometrial/myometrial interface, Faint focus of calcification. This is of doubtful acute clinical relevance. Both ovaries appear normal and show follicles. No PCOS morphology. There is a small amount of free fluid in the pouch of Douglas."
My heart dropped, it was at that point it was suggested that I was experiencing muscle pain. I began to do fortnightly sessions with the physio therapist. I would find that doing the physio made me flare up but occasionally helped so I kept going back every two weeks. It got to the point that my pain got so bad once again that I just stopped going. I didn’t feel heard anymore and I didn’t want to be going to Physio if I felt like it wasn’t working for me.
So I went back to my general GP, this time they gave me a diagnoses of Fibromyalgia. I felt like it was the right diagnosis at that moment. The chronic pain in muscles in my abdomen, back, or neck. The pain occasionally occurred at night, the constant nausea, constipation and excessive amounts of gas I had. Even the feeling of fatigue, muscle tenderness, difficulty falling asleep, having pins and needles or a sensitivity to pain as well as other symptoms. But one thing that did not account for was my heavy periods and the amount of pain I was in before, during my period and sexual activity at that point in my life.
At this point, I found my mental health getting lower and lower as time went on and every intense flare-up made me feel like no one understood me and maybe everything was in my head. The contraceptive implant was not working for me, the Physio I was doing was not working for me, and the workouts I was opting for doing at home were not working for me even despite my recent fibromyalgia diagnosis.
At that point, I was over everything and at an all-time low. I booked an appointment to go and see my gynaecologist 2 hours away to discuss the things I was experiencing. His response was, “We will try the Mirena for you. It’s proven to be very effective for those with heavy bleeding.” So, I got the Mirena.
Fast forward 1 year later, I found myself on school camp surrounded by a bunch of girls. They so happened to be talking about Endometriosis and how they had been diagnosed. I had never heard about it up until that point and the way they were explaining it weighed on me that I could potentially have what they have.
Not long after school camp, I found myself researching doctors I could find that specialised in Endometriosis or Women's reproductive issues and got myself a referral and appointment to the closest one I could find. This time I wasn’t going to the doctor empty-handed handed I brought all my own history, my family history of reproductive issues, and my symptoms. I wanted to go into that doctor’s appointment with every single bit of information I could gather to show.
On the day of my doctor’s appointment with the most experienced reproductive general practitioner I could find, I gave her all my findings. Soon I found myself in tears trying to explain my symptoms. The pressure of dealing with everything I was experiencing just came out, I found her looking at me in disbelief that no one had tried to do a scan on me for Endometriosis before. By the end of the appointment, I was sent off with a referral for a scan and some blood tests to be done.
On the day of my scan, I was yet again hopeful that they would find something. During my scan, I felt this intense pain, similar to what I constantly felt during flare-ups. The Radiologist realised I was almost in tears and tried to take things as carefully as she could. The appointment went by fast but what felt like an eternity of pain.
A few weeks later I found myself back in with the general GP that specialised in reproductive issues to get my results. The results read:
"Right ovary normal, mobile but tender."
With everything else showing up normal they could not find any signs of deeply infiltrating endometriosis but could not eliminate superficial endometriosis. With these results my doctor told me to find out if I did have endometriosis I would have to push for a laparoscopy.
Going out of my appointment I was determined to get in for a laparoscopy, I felt this was my time to finally find answers. So I called my gynaecologist, but the only time I could get in was a month later and that was a problem for me. The time I could get in so happened to line up with the same time I was moving states across Australia so I requested all my information to be sent to me allowing me to sort everything out once I moved.
Fast forward to 2023, I was scheduled for a laparoscopy in January of 2024 where they would go in to diagnose me for endometriosis and remove it if I had Endometriosis. I was originally put through the public sector for my operation. During my pre-operation appointment, I was told that going in for a laparoscopy might not show anything, that it might be just a manifestation of my childhood trauma. That my chances of having Endometriosis was of disbelief. I pushed to continue to get the laparoscopy and was then transferred into private care for my operation.
The day of my operation I was as nervous as could be, as it was my first operation. I sat in the waiting rooms for hours, the feeling of hunger overwhelmed me due to having to fast the morning of. Eventually, I was put through, I remember being greeted by really friendly staff and before I knew it I was recovering from the surgery.
The first words that came out of my mouth after surgery were, "did they find any endometriosis?" I was told I would have to wait until I got a call from the surgeon. I left the hospital soon after and not long after being discharged from the hospital I got a call that I still remember to this day from the surgeon.
“We found severe endometriosis, Stage 4.” I broke down in tears, I kept repeating myself, “ Thank you, Thank you, Thank you.” I finally had the closure of knowing that the pain I was going through was not in my head and that the times doctors told me I was just experiencing something normal was not right. I had my clarity.
Fast forward 6 weeks I had my post-operation appointment. The doctor gave me my official results. Stage 3/4 Endometriosis in the Left Side Wall, Pouch of Douglas, Bladder and all over my pelvic floor. Also having to remove Endometriosis from my Left ureterolysis going around the nerves. We discussed the options to prevent it from spreading further and the only option I was given was to go on the pill. At that point I put my guard up but continued to ask questions that I had prepared before the appointment. When I asked about all my endo being taken out the response I received was, “your cured.” Which I knew for a fact right then and there I didn’t want to be going through my doctor anymore.
I refused to take the pill and ended up retrieving my photos and results from the surgeon as I no longer felt comfortable seeing him due to the constant feeling of uncertainty he gave me regarding my diagnosis and the wording used to explain endometriosis. I felt like he didn’t understand endometriosis to the depth that he should have treating me.
I am still navigating my way through my diagnosis today. Learning how to eat right, what flares me up, how I can manage my symptoms and work on becoming the best person I can be given my diagnosis journey.
The only advice I could give to those struggling with Endometriosis symptoms and medical gaslighting is to stand your ground and know deep down that your pain is NOT in your head and that you are worthy of a proper diagnosis and proper medical treatment! If you feel something isn’t right, stand up for yourself. You know yourself more than anyone else!
- Catherine