Endometriosis Awareness Month – Gabi's story
March is Endometriosis Awareness Month. To help broaden our understanding of this debilitating disease that affects one in nine women, we spoke to our friend Gabi, who bravely shared her story.
"This has been a lifelong journey for me. I have had bowel and gynaecological symptoms forever. I first saw a gynaecologist when I was 17 who put in an Implanon which was meant to stop my periods. It didn’t work for me. Fast forward to 2017, I was diagnosed with Endometriosis, but by that time I’d had multiple cysts on my ovaries that had burst, multiple bowel issues and I was just constantly fatigued and in overwhelming pain. I was in and out of ER and at some point, the pain just became too much.
Thats when I had my first surgery. They removed a lot of scarring and told me that it was all gone and wouldn't regrow – within a month I was back at the gynaecologist and its safe to say they hadn't removed it all, not by a long shot. I was at the doctor’s office pretty much every month asking them to do something else. I was still on heavy opioid pain medication and I was struggling to function on a day to day basis.
Thats when they told me, you need to get pregnant now or you’re going to risk not having a baby at all. I was studying at the time so I had to give that up. My pregnancy was very normal – I suffered all the usual pregnancy aches and pains but the Endo was mercifully quietened for a while. It then came roaring back with my periods when I was five months post partum. I lasted another five months off medication before I had to go onto strong meds again, which had its own complications because I was still breastfeeding and didn't want to have to give that up. On top of that I was dealing with postnatal depression so it was a lot to handle.
Since then I have been on strong opioid medication. I don’t go out much, I don’t really have a social life because I frequently have to cancel on people and I’ve found that people have a tolerance of certain amount of time they’ll give you to be chronically sick and then they’re done. I often can’t drive because the meds will hit me hard and I just have to lie down.
The side affects from the drugs are really awful – I have loss of concentration, no energy, I’m forgetful, my work performance has dramatically decreased. You also build up a tolerance to the drugs but you have to be so careful in what you take because there’s an addiction side to them. The worst part is that when you run out of your weekly meds, the only way to get more is to present to the ER and be administered some there. And lots of hospitals will treat you like a drug seeking addict, rather than recognising the very real and debilitating pain that you're in.
Then there’s the time I spend in doctor’s waiting rooms, in pharmacies, driving to doctors, driving to hospital – it affects nearly every facet of my life. Not to mention the actual monetary cost – what I spend in weekly medication is huge. I had surgery last year with a private surgeon – up until that point everything I had been doing was through the public system. That surgery cost us $20,000 which of course we didn't just have lying around – it had to come out of my superannuation.
The surgeon estimated that I would have a 70–80% reduction in my symptoms and that sadly hasn’t been the case. There is still scarring on the four ligaments which support my uterus so now I am preparing for a hysterectomy. It’s been really hard to reconcile that we will not be able to have a second child, we won’t be able to give my daughter a sibling. But we’ve had to assess what my mental health can take, what our budget can take and what’s going to be the best thing for all three of us in the future.
Last year I tried to overdose – I just wanted the pain to go away. I was so distraught and in such a deep depression that it really seemed to me the only solution. I’m now on antidepressants, I take things to help me sleep and I’m recently off mood stabilisers which is great news.
Hospitals are getting better at taking people seriously but there is so much work to do in raising awareness of the severity of this illness. I also recognise what a privileged position I am in – I’m caucasian and from a supporting family so I know that I receive better treatment than a lot of other women. But that just highlights the depths of the inadequacies in our health system.
My new motto for everything is high hopes, low expectations. I have to roll with the punches and see how I can get quality of life back. To live most days pain free is my goal – let’s see where this year takes me."