After I was diagnosed with Endo the response I got the most often was
"But you're so young!"
Yes, I was young. I was 20 when began noticing the severity of the disease, but found that symptoms really began around the time I was 14. After diagnosis I began searching for other women my age to read about their experiences, or to try and connect to someone else feeling how I felt. I maybe came across a handful of profiles of women under 27 that spoke about having Endometriosis and living with the disease. The reality was that very few women received diagnosis before the age of 32.
So what happens when a 20 year old is told you have a hormonal imbalance that will change your life forever? What happens when you are told you might not be able to have children before the thought even enters your mind? What happens when you are told you have three years to try for children before your chances drop dramatically, and you still don't even have a steady boyfriend? What happens when you have to go through chemical treatment while you are still just trying to finish school? What happens when your first time having sex hurts like you expected, but so does every time after. What happens when you trade student loan debt for medical bills?
It's like listening to your life end before it even begins. It's like being a stranger to yourself in the years when everyone is telling you to find out who you are.
I am not just speaking about infertility, but about the entire package that comes with having Endo.
It's the surgeries, the medicines, the acupuncture, the diet, the bleeding, the boating, the crying, the weight, the headaches, and the emotions.
This disease is no longer for the middle aged. It's hitting girls during their most fragile years and leaving them to face a lifetime of internal chaos. We start frantically planning for what we should do next.
Do I freeze my eggs now?
What if the Endo comes back?
Do I do Lupron and go through menopause in my 20's?
Am I okay with a hysterectomy in my 30's?
Will early hysterectomy raise my risk of Ovarian Cancer when I am older?
How do I explain to my future husband about Endometriosis?
How much is IVF?
Does insurance cover any of this?
How will I maintain a job with my pain?
Do I explain my disease to my future employers?
So I have to avoid dairy, alcohol, gluten, and soy for the rest of my life?
It's all just... chaos.
You are left with so many questions. You are left sad and afraid of what this means next. You feel alone. You feel different and broken. It's no wonder so many women suffer from depression and anxiety. I learned while in treatment that the disease had been dubbed "The Invisible Illness".. it sounded like a horror movie, and well, it was. When relief can't be found you lose hope it will ever get better. When one surgery follows the next you begin to think nothing will ever change. You only have questions never answers.
You are left with so many questions. You are left sad and afraid of what this means next. You feel alone. You feel different and broken. It's no wonder so many women suffer from depression and anxiety. I learned while in treatment that the disease had been dubbed "The Invisible Illness".. it sounded like a horror movie, and well, it was. When relief can't be found you lose hope it will ever get better. When one surgery follows the next you begin to think nothing will ever change. You only have questions never answers.
So why is it that when I am doing most of my research the only answers I am getting are from other women suffering? I don't understand how still so much is unknown about this rampant disease. I don't understand why we are left to suffer until finally we break down and give away our insides. They can't even diagnose it without cutting into us. I don't understand how the term Endometriosis still goes unrecognized in conversations. I still don't understand why I am having to use a cancer screening test that I pay for out of pocket, because we don't have our own and insurance won't cover it.
1 in 10 women have Endometriosis in the US and we still don't have our own screening test.
1 in 10 women have Endometriosis in the US and we still don't have our own screening test.
I just don't understand why are we not talking about this as soon as girls hit the age of menstruation. I complained for years, and still not one doctor asked me about Endometriosis being in my family. I even had one tell me I was just to young! Endometriosis doesn't have an age limit. I began this journey at 21 and I will face it for the rest of my life. I am writing this today because I am angry. I am angry and saddened at the phone calls I get from other women talking about the hopelessness and pain that they feel. While nobody ever told me life was fair, they never told me how painful it would be. So I want to talk about it. I want to talk about it a lot. I want to ask questions and give answers. I want to meet other women and I want to hear their stories. I want to figure out what comes next in the medical word for us. I want to help in any way I can. I want to stop being passed around until I can meet a doctor who can carry a conversation about options, while understanding I am a human and being pumped full of hormones or being cut open every other year is just not working.
Recently I found a website called http://www.myendometriosisteam.com
It's like Facebook for women with Endometriosis. It has really helped me connect with women of ALL ages about having this disease. It's open and honest, and a very real look inside what living life is like and can lend some much needed support. You're not alone in this. There are others out there who do understand. Never be afraid to ask questions or to push for answers.
Endometriosis is no longer my mothers disease, it's mine too.
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