Alice’s Endometriosis Story
“And I know this is difficult for some people to hear, but I do think everything happens for a reason and that endometriosis was one of my biggest gifts, as it sent me on this journey.’”
Alice was 10 when she first started having her periods. Straight out of the gate they proved troublesome. She was suffering from extremely painful periods and would miss 3-5 days of school every cycle. ‘It’s just because you are so young! Periods can be painful. You just haven’t learned to deal with it properly yet’ was the message Alice got from the adults around her. A few years later, at age 12, Alice, despite being older, was still not able to ‘deal with it’ and she was prescribed hormonal contraception to try and help her cope with the pain. It didn’t do much to help her and for years she’d be back and forth to the GP's office.
The doctors explored everything from IBS to PCOS - but no suspected diagnosis ever seemed to be the right answer.
Alice, now well into her teens, busied herself with teenage life. She went to uni and told herself that one day she’d get around to dealing with the pain properly. After uni, life slowed down, and in turn, the pain became more apparent. ‘I realised that I was actually in pain every day. During my menstruation, I would be in severe pain, but then the rest of the time I just kept having this dull ache.’
Discovering endometriosis through Lena Dunham
Then one day Alice picked up Lena Dunham’s autobiography: Not that kind of girl.
There on those pages, Alice for the first time saw her symptoms and experiences of them, reflected back to her, black on white. ‘That’s what I have! It’s got to be.’ And now she even had a name for it. Endometriosis.
Now aged 21, Alice went back to the GP. ‘I think I have endometriosis. Please test me!’ This would be a nice place to end the story - with a: and then they did, they discovered it was endometriosis and she was given all the help she really needed. But, well…
Alice found herself being pushed around the system, being tested for, what felt like everything other than what she was asking for, continuously being told that it was more likely that she had an STI and with Alice becoming increasingly desperate for someone to believe her when she told them she was in pain - and a lot of it.
Getting help in New Zealand
Five years later she and her partner moved to New Zealand. At this time Alice also decided to come off the contraceptive pill, for the first time in 14 years and she now felt just how bad the pain really was. Alice decided to seek help from her new GP and it turns out that moving to New Zealand might have been the best thing she could have ever done. Within a year Alice had surgery to diagnose, and remove, endometriosis. Three months later she had surgery again, to remove more. The surgeons hadn’t been able to get it all the first time around. That STI the GPs back home had been convinced Alice had - was now Stage 4 endometriosis.
‘It was really mixed emotions [when first diagnosed]. On one hand, you are so happy that finally, someone is believing you and being told that you are not insane. On the other hand, you are immediately hit with the questions around fertility and when you want to have children and that was really scary and overwhelming. For my partner as well.’
Besides talks about hurrying up and start making some babies, Alice wasn’t given much information about what would happen next or what her options were. But Alice is keen to stress that she also didn’t ask the questions, and though in an ideal world she’d like for it not to be on the patient to have to ask - if she were to do it over, she’d come armed with questions.
The positive aspects of diagnosis
But simply getting the diagnosis did impact Alice's life in a hugely positive way: ‘The endometriosis diagnosis did change my life. Because I really hated my body. I resented my body, I basically wanted to live a life that my body wasn’t keeping up with and a diagnosis made me understand my body and made me fall in love with it again.’
‘A big part of endometriosis is suppression. Suppressing your pain. Suppressing your cycle with contraceptives. Suppressing your voice, not wanting to talk about periods. Going on my fertility journey meant that I had to respect my body and honour my body. So this journey [after being diagnosed] has been hugely positive for me.’
Navigating life with small children and a chronic illness
4 months after that second surgery Alice and her partner did become pregnant. Now a mother of two under three, Alice is navigating life with small children and chronic illness.
‘It is really hard with small children, but because I’ve been either pregnant or breastfeeding for so long, it wasn’t actually until about five months ago that my period came back, and they are unfortunately getting progressively worse. But I have amazing help, and more importantly, I now have the confidence to ask for help and let the people around me know when I need to take time for myself. And honestly, I think the female body is phenomenal. We can suppress what needs to be suppressed to take care of our children. So yes, I still take painkillers in the day, but I can’t take the really strong ones and look after my children, so I just get through the day and then once my kids are asleep I take the strong stuff.’
For Alice there is another really important component to how she has coped since being diagnosed: ‘I know it is a bit airy-fairy, but I do believe in the power of positive thinking and the law of attraction and I do practice gratitude every day. And I know this is difficult for some people to hear but I do think everything happens for a reason and that endometriosis was one of my biggest gifts, as it sent me on this journey.’
In 2018, not long after she was diagnosed, Alice started her Instagram account @what_the_f_is_endometriosis to share with the world how little she actually knew about this illness that had governed her life for so long - and as she’s been learning she’s grown a massively supportive community and in turn, she has been able to support lots of other women on their endometriosis journey.
What Alice wishes she had known
And looking back Alice wish someone would’ve told her that:
Periods shouldn’t be painful. Listen to your body, don’t ignore what it is telling you.
The medical world is there to support you, but you have to be confident in your own research and trust in your instincts.
That you can have an amazing and fulfilling life with endometriosis.
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