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Jordyn's story: Endometriosis

I remember the first time I came across the word Endometriosis, I was 17, suffering from extremely heavy periods and excruciating pain every month since the age of 12. For me, I found it through good ol' Google as I had been seeing doctors from my first period but I was always told, like every other sufferer of endometriosis, that it was 'just bad period pain.' I was checked for polycystic ovaries at 13, and put on the pill to 'calm it all down'. I continued taking the pill until I turned 18, knowing it made absolutely no difference as I was still bleeding for weeks at a time, and had days where I was lying on the bathroom floor in pain.

I decided to take matters into my own hands and continued visiting GP after GP, telling them that it was Endometriosis but continued to be turned away. I was given the Implanon at 18 and after 6 months, had the Implanon removed, and started on the Depo Provera shot. On my 2nd month of the Depo Provera, that was when things got too much, to the point I will never forget. I bled for 2 months non stop, presenting myself at the ED every few weeks, and being put on cocktails of medication to calm it all down. Having had multiple ultrasounds that didn't show any signs of Endometriosis, I thought I was going mad, and after finally being referred to a gynaecologist, I was made to feel that way too.

I was given the paperwork for my first laparoscopic surgery, with mirena insertion. I was told 'Now we may not find anything, like what your ultrasounds show but as you are persistent, we will bring you in'. I asked if nothing was found, what would be causing the bleeding and pain, to which I was told it might be a 'psychological thing' aka it's all in my head. After months of waiting for a date for surgery, I was finally seen and boy, was the specialist shocked by what she found, even uttering the words to my mum, 'We are lucky we brought her in when we did, otherwise if left for a few weeks longer, there may not have been anything we could have done for her'. I stayed in hospital a few nights to recover, and was sent on my way.

About 6 months later, I was complaining of bad pain again and presented myself back at ED multiple times. We organised another laparoscopy and replaced the mirena, but apparently not much more endo was found. Feeling like I wasn't being listened to, I decided to seek out a second opinion, from a very highly recommended specialist. After waiting months for an appointment, I was seen but what was said was quite disappointing. After taking a quick look over all my paperwork that I have collected over the years, I was given a referral for a pain specialist and pelvic physio. I began forking out hundreds of dollars every few weeks to see both, but I just felt the pain was being muted, rather than treated.

The excessive amount of prescriptions each day that I had to take just wasn't good enough. I persisted and went back to see the specialist and I was told that she would take the mirena out, and put me on a nasal spray by the name of Synarel which essentially put me through a state of menopause. The side effects, and the feeling after 9 months of this was too much and in that time, doing my own research, I went for a third opinion.

This time, a male specialist, who took one look at me when I sat in front of him and said 'You must be desperate if you're looking for a third opinion, from a male'. I was desperate, I had no life, I had to cut back hours at work constantly, I was cancelling events and struggled with daily activities. After looking at my paperwork, he was disgusted by how I had been treated up until now. He asked if I had a bone density scan before starting Synarel, which I didn't, I wasn't advised of this. But upon learning, is extremely important, just like only being on the prescription for up to 6 months at a time, rather than the 9 that I had been left on it for. He said that putting me on Synarel is when a specialist is out of options, and has basically 'given up on me'. We booked a third laparoscopy, and when I came out of it, he expressed how he couldn't believe how I was left on the inside from the two previous laparoscopies.

The amount of scar tissue that was left behind, he said it was no wonder I couldn't do anything. I had already been told it was Stage IV Endometriosis or 'Deep Infiltrating Endometriosis' but he said if it was possible to go further, he would call it that with a further diagnosis of Adenomyosis.

It's been almost 5 months since my laparoscopic surgery, and in February this year, I had the mirena placed back in. This time hoping that since the Endometriosis was more thoroughly excised, I would have better results but unfortunately, everyday life on the mirena is becoming a bit of a struggle again, and at this stage, it's back to square one to see which path I can take now.

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