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Lived experience is raw, it is reality.

Category: Adenomyosis, Impact on Quality of Life, Impact on Relationships, and Multiple Symptoms.

When I was so consumed by chronic dagger like strikes to the stomach, running to the loo as I was going like the clappers, barely able to walk as my lower back was in spasm…I was not over-reacting, it was real, it was my reality.

Calling into work again for the second day that week, unable to even stumble to the shower…it was my reality. Will my boss think I’m pulling a sickie, am I exaggerating my symptoms for another day under the duvet? This was my reality.

I get invited to drinks on Friday after work and the first thing I think of it what is my exit plan if I go or will I get a pain attack just before I about to go? I have been popping paracetamol and codeine like candy. I am on day 21 of a major flare up. I haven’t been sleeping well lately and am barely able to juggle the balls in the air. I am constantly anxious that one, then two balls will drop.

I almost become slightly OCD about keeping my house clean and keeping on top of any bills or personal admin, to feel a sense of control. The anxiety sits in the pit of my stomach constantly. The exact same feeling I had for about 3 or 4 years after the Christchurch earthquakes. My adrenaline and cortisol must be bouncing around my body and I wonder what that is doing to my insides. This was my reality.

My energy levels are depleted, social occasions and girlfriend catch-ups can leave me exhausted and disillusioned. One of my best friends informs me, not long before I got a date for surgery that I will ‘have to change the story, the dialogue soon.’ I am dumbfounded. The same friend that tells me she just uses a hottie when she gets period pain. I feel totally unsupported and not listened to. My situation minimised.

I am now five months post hysterectomy (when I wrote this) and about two month’s symptom free. My outlook and energy levels are positive. Health and wellness is at the forefront and I have started weekly boot camp training and hill walks. I have this free-time, devoid of pain management; my thoughts and mind is clearer, less cluttered, I am regaining my life again. A bit like a toddler and its training wheels being taken off, a sense of independence perhaps. But I still harbour a sense of loss. A come down from the adrenaline and stress, I am not sure, but I sit with it.

Since discovering the adenomyosis and endometriosis social media pages – the light has gone on. Other women with ‘lived experience’. Safe forums where there is no judgment or silly questions. Sisters unite, a common thread.

This has been an extremely emotional and psychological rollercoaster the last couple of years, not just a physical gyno journey. Women just like me having to constantly prove ill health and symptoms, justify ourselves to our friends, whanau, partners and workplaces. That was my reality.

As I paddle in the early summer tide with sun streaming down on my back, entrenched in the present, I just sit with it.

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