Living with Endometriosis: Jenene Crossan
Crippling. Scary. Frustrating. Debilitating. Painful. Infertility. Nightmare. Common. Surgery. Disease.
These are just a few words that come to mind when we think about endometriosis.
It’s more common than you think, with Endometriosis New Zealand reporting that endo affects approximately 130,000 girls and women in New Zealand. The scary bit is a high percentage of women are still undiagnosed.
This was a very real fact for nzgirl founder Jenene Crossan who at 35 was only diagnosed with the disease in September 2012. Two surgeries later, Jenene’s on the road to recovery with “pretty spectacular” results. Now it’s a waiting game to see if the disease comes back.
We talked to Jenene about the impact of living with endo, her advice for other women going through a similar story and how she copes with the pain, brought to you by Libra Hotties.
1: What impact has endometriosis had on your live?
Pre-operation endometriosis was crippling. Basically one week out of every month was taken up with it, not to mention a raft of circulating issues that I never really put down to it. I guess I just ‘lived with’ having a sore tummy all the time, thinking it was normal. Post surgery and life is on its way to a better place. My health feels radically transformed and whilst it hasn’t gone completely, it’s far more manageable.
2: What does endo look like for you? What symptoms do you get?
You sure you want to know the answer to this? It’s not a pretty picture! Basically indescribable pain is at the core of it. Bent over, unable to move, crawling from bed, to bath, to floor, to toilet. Literally. Vomiting and diarrhea just part of the unpleasantness – part caused by the endo, part by the drugs. The drugs fix the pain, but cause their own issues. My bowel was never a happy, fun place. High temperatures, backaches, chronic tiredness….
3: What would you say to a women who’s going through a similar story to yours?
Don’t just tell yourself that you need to ‘harden up’. It’s not true – it’s not ‘normal’ to live with this level of pain. Get it checked out and push for answers. The operation for diagnosis can be a bit scary, but it’s a path forward to wellness where you’ll feel ultimately better and that’s the goal. It’s not a fun process to go through, but neither is living with debilitating pain. Get help and get it sorted – you’ll be infinitely happier for it.
4: How do you live with it? What strategies have you developed to help you cope?
Planning has always been important so nasty surprises are had – like trying to perform on stage or deliver an important presentation during the first day or so of my period. I’ve been caught out a couple of times and it’s not fun driving to something knowing you could lose it at either end at any time. Getting drugs and heat in early is good for getting on top of it quickly. I’m always grateful for when it starts during the day so I can ‘climb the mountain’ faster (as opposed to middle of the night when you haven’t eaten, so can’t take medication).
Libra Hotties have been a life saver – being able to easily stick a patch on under my clothes and keep going. Sooo much easier than taking a hot water bottle around with me!! They last eight hours or so and do the trick. I can frequently be found (even post op) wearing one of these.
I’ve also taken a few other initiatives on to get to the bottom of my pain. They don’t really know what causes endo and it can have a lot of other ‘roll on’ affects. For me, working out what was making my bowel unhappy was important. I undertook some allergy testing and worked out which foods needed to leave my life. Gluten being top of the food chain. Trying to be sugar free also helps and my overall health has benefited from these small, but permanent changes. I took nine weeks off alcohol, made a conscious effort to ensure exercise happens at least three times a week and for me, the pill wasn’t an option. I wanted to feel all my emotions and felt this masked them. I feel overall a much stronger, healthier and more rationale human being for all of these changes.
5: What’s it been like living with it for so many years undiagnosed? Is it easier to deal with, now that it’s diagnosed?
To be honest? A bit embarrassing. I think I could have trusted myself a bit more and got it taken care of earlier. I knew something wasn’t right and I didn’t listen. Now though, I feel relieved and I’ve been very lucky to have amazing people around me. In particular, my partner Scottie has been incredibly supportive and my surgeon has been understanding and very knowledgeable, helping us navigate the terrain. It’s definitely been easier since diagnosis – you have a road map and a plan. That always makes it easier – we can deal with a plan, we just can’t deal with surprises.
6: What’s your biggest fear?
Probably not having a baby (which is considered a very good way to ‘cure’ endo) and instead having to have a hysterectomy at a young age. That’s a worse case scenario, but one that came true for both my mum and my sister. The idea of having to be on hormone replacement scares me – as I really don’t like false hormones. Other than that, I try not to spend too much time worrying about it at all and just take one day at a time.
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