For 18 years – I am 31 – I have lived with a secret. It’s a painful secret, sometimes a shameful one. It’s a secret I have been accused of lying about. It’s something I've hidden at professional meetings, at picnics and parties, from friends and family and lovers. Despite my secret, I’ve turned up to every birthday, every all-nighter at the Cross (before lockout), and every long and tearful BFF talk that absolutely had to be had, every chirpy breakfast. Hardly anyone knows….
Want to know what my secret is? It’s called endometriosis.
It’s not very sexy, not sexy at all in fact, but I’m at both a time in my life, and in my relationship with this disease, that I’ve decided to take some control and talk about it in public for the first time. Let’s just (basically) define this thing. It’s the tissue that’s supposed to be inside your organs – mainly reproductive – growing outside the organ. This basically means… pain. Like a period, only a million times worse (and I’m not talking about comparing it to child birth, I have no idea, nor will I probably ever). Pain sometimes, but all the time or me. It’s different for everyone. Here’s what it means for me.
It smothers most of my lower reproductive region. My bowel, as well, and what remaining uterus and ovaries I have left after several surgeries. I am generally in pain. So when I’m at your house I can’t go to the toilet because I might be stuck in there for 40 minutes, bleeding from my bottom. Or constipated. Hard to say. But always in pain. Sometimes I lie on my bathroom floor (in private), spasms shooting down my legs moaning until the pain subsides. The cold tiles somehow help.
This is my background, my history, my endo-manifesto (ha!) and it will form the basis of a personal campaign.
My partner is amazingly supportive. So is my family. I have started Syneral, so at 31 I have been transitioned into induced menopause. Next steps, deal with the spray, hope pain stops and go in for a full hysterectomy (this won’t cure endo but will help with some of the problems) at age 31. I don't want children, well didn't. So the decision to be pain free, came sort of easy, or the only option... who knows.
Endometriosis impacts on my ability to do my job but no-one would ever know. I've never missed a day of work, or an important function for endo. Despite the pain. Ever. I am learning, this is ok to do.
I have sought out the most wonderful team - GP, Specialist/Surgeon and Psych. There have been many. My experience has shown me to seek additional help if THEY don't believe you. I finally found people who did. It has changed my life.
The worst part is being surrounded by pregnant women. In every specialist appointment, scan or ultrasound, I seem to be nestled in amongst ladies (and their man) waiting for a baby update. I am not a hater but it is not what I want to see when I am sitting in a room, in agony, about to be told I probably won't have a child. The day I went to pick up my spray, the pharmacist reacted like I was prepping for IVF and spoke of my eagerness to start. I made it clear, next time that this was for hysterectomy prep. at age 31 and to back off about babies and IVF eagerness. I was just eager to get better.