Enduring Endometriosis (Erica)
I’m Erica. I’m 43, mother to an 11-year-old son and two-year-old pug. I crochet like crazy and I’m always making gifts for my friends.
What is the greatest challenges you have had to overcome in your life?
Everything in my life all comes back to my endometriosis. Endometriosis is awful and I wouldn’t wish it on anybody. I got diagnosed when I was 21 but I’d had pain since I was eleven. It took ten years to get diagnosed. Back in the day, twenty years ago, no one spoke about periods, no one spoke about pain, nobody knew or spoke about endometriosis.
My mum had been taking me to the doctors since I was eight, because I had tummy pains. They used to tell my mum I was putting it on, I was doing it for attention, there was nothing wrong. Then, when I got my period, the pain intensified, my periods were heavy and for someone who was twelve years old, and doing intense sports, that was a lot to cope with.
I used to ask my mum, ‘What’s wrong with me?’, ‘Why am I hurting all the time?’. Doctors used to tell her it was all normal, normal to have pain with my period, just get on with your life, she’s faking it, she’s lying, she’s putting it on for attention, there’s nothing we can do.
When I was 21, out of home, I had a really good GP, and she suggested we investigate this further. So, I went and saw a gynaecologist, had a laparoscopy, and he said ‘You have endometriosis, there’s nothing you can do about it, I’ve burnt some of it off, if you want kids you need to before your 28 otherwise you will never children.’ He said it all like that in one sentence. I was on my own, I didn’t have a boyfriend and when I told him the doctor said, ‘I suggest you go out and have a one-night stand’.
How did you initially react?
I don’t really remember how I coped with it. I walked out of the office, thinking nothing of it. There was no definition of what endometriosis was, no risk management, no cure, no pamphlets, no support group, no information, nothing. So, I kind of just ignored it.
I went on with life. I travelled overseas a lot on my own. The diagnosis always played on my mind. I was getting closer to 28 but I met my son’s father and he and I started IVF when I was 28, before we were even engaged.
IVF was an awful process. Ten years in total we tried on and off. I’ve had nine pregnancies, but I’ve only got my one son, my little man.
There was this huge chain reaction it had on my life that I didn’t expect. I just went on with my life, not expecting how it would effect everything. I had no other friends going through IVF, no one else who knew what it entailed or how taxing it was financially or emotionally or physically. We did several rounds of IVF and it came out that I also had polycystic ovarian syndrome (PCOS). That made a lot of sense too with how intermittent my periods were.
The doctors said that 99% of people at my age doing IVF are successful, but “You are the 1%. We have no idea what to do with you because your body isn’t doing what we want it to do”. Which is really awful, because there are so many stages that lead on to more stages, I wasn’t producing enough eggs, and the treatment for that landed me in hospital many times. It’s actually really dangerous. The medications you have to go on can overstimulate your ovaries and can actually kill you!
Between when I got diagnosed at 21 and now (43), I’ve had 23 surgeries. The last one being a few weeks ago. That’s including IVF treatment, multiple laparoscopies to get rid of the endometriosis, I had an emergency appendectomy because it was actually my appendix that had burst and not my endo pain and this had confused the doctors.
Did your reaction change across the years?
When I look back now, I was really naïve. I had no idea how it would change my life. I had a plan. Be a mum, I was going to have ten kids, a beautiful house, be married and have a wonderful life. It really didn’t work out like that.
I’m so lucky to be my son’s mum. I wasn’t supposed to have kids. And he knows about the story of what his Dad and I went through to have him. He makes me a better person.
What did you ultimately learn?
It’s been a lot of accepting my life and body for how they are. It’s a work in progress every day. But I had to let go of thoughts like, ‘My life isn’t where it should be’, and that’s a really hard pill to swallow. Some days I’m better at handling it than others. More good days than bad now but its taken a lot of work on me to get to that point of ‘This is how it is and I need to make the most of it’. I need to be happy with doing the best that I can, I can’t do any more than that.
Do you often tell people about your endometriosis?
I’m really comfortable talking about it. I think I have this big sign above my head that says ‘Endometriosis! IVF! Come and talk to me!’ I have a lot of friends with daughters who are coming and talking to me because they’re at the age of periods and pain. There is a huge network of people experiencing endometriosis and I was plugged into that community for a long time, and there are many friends I’ve met there. There have been so many young women I’ve connected with and helped and advocated for. I know way too much medical stuff, I’m like an honorary doctor LOL.
People do gravitate towards me, maybe because I’m so open about talking about it. It should be spoken about. There is still stigma around it. I’ve spoken at the Australian Parliament House, trying to get more funding for research and management into a cure for endo.
Would you go through it again for the same outcome?
I’d liked to say yes, straight off the bat yes, because I wouldn’t have my son. But I would have liked to have seen more progress in the management of endometriosis by now. There are too many women who have a similar story. I’m the product of a disease not being managed properly or acknowledged. I would go through it all again, but I would have hoped there would’ve been more progress. It’s made me who I am so I can’t change anything that’s happened and at the end of the day I’m a better person because of what I’ve been through.
