I am 1 in 10.
Your sister might be 1 in 10.
Your daughter might be 1 in 10.
Your Mum might be 1 in 10.
Your wife might be 1 in 10.
Your best friend might be 1 in 10.
You might be 1 in 10.
You might not know that you are one of the 1 in 10.
All of the above might be true for you.
I've been quite open about my battle with Endometriosis. You can go back and read 'My Fertility Story' here. However that hasn't always been the case. When I was first diagnosed I was lucky (although I'm not sure lucky is the right word?) that my older cousin also had the same disease. It meant that the dialogue for this horrible condition was already open in my family. It was something we were aware of and knew to look out for not only in me but in the other cousins/sisters/relatives. However outside my family circle I found myself trying to explain what "it" was to everyone else. No one quite understands the debilitating and emotional effect it can have quite like another sufferer. When there are no answers, a delay in diagnosis, you are told it's "just" period pain and you are forced to take time off of school/work/etc you can start to question your own sanity. You can start to wonder "Am I just imagining this? Maybe they're right, maybe I am exaggerating this." Then you are hit with another flare up and whilst huddled up you know that's not the case. You know it's real. You're just not sure what to do about "it" exactly.
So I started talking about it. Of course it wasn't that simple. Mum & I saw a fantastic specialist, I had surgeries (multiple), I've had different medications, I've tried diet control, I've implemented natural therapies, the list goes on. I touched on my journey in my previous blog (here) but in short: I found what works for me. That's not to say I'm cured. I still have good days and bad days. Quiet times and flare ups. But I've learnt to look out for myself. Be aware of what can trigger me and do my best to avoid it. Know what to do to treat a flare up. Half the battle though was talking about it. Spreading awareness. Letting the people around me know how I was feeling and WHY. Even though half the time I didn't know exactly why myself.
And that's why I continue to talk about it to this day. After my last blog I had so many women reach out to me privately. They were sufferers themselves or Mum's watching their daughters struggle with the unknown. Talking helps spread awareness. And even though I am not a doctor, I have no medical qualifications, I can help simply by sharing my story. By being relatable. By making these girls and women feel less alone, less crazy and less confused in their battles.
I had my last surgery just over 12 months ago. I'm planning on giving an update on my progress at some point however here today is not the time for it to be just about me. It's about all the other women affected. It's the pain, discomfort and heartache they are living with. It's the time they have to take off of work or school. It's the wheat bag they frequently heat in their microwave to bring themselves some relief.
Because currently there is a 7-10 YEAR delay in diagnosis.
Currently there are many women putting up with chronic pelvic pain, bowel and bladder symptoms, irregular periods, infertility, abnormal bloating, fatigue, the list goes on.
Some sufferers experience all of the symptoms. Some experience one or two. Some experience no symptoms at all until they try to get pregnant and find they can't.
Just to confuse matters more there is no pattern or regularity to Endometriosis pain. You can be covered in it and have minimal pain, you can be covered in it and have excruciating pain. You can have very minimal growth (compared to other cases) and yet still have some of the worst pain.
Endometriosis doesn't discriminate. It's unpredictable. And there is still such a gap of knowledge and research.
Even if you're not a direct sufferer it's up to you to help spread the word. Because there is every chance that one of the women in your life is the 1 in 10.