It took me years to share about my experience with having endometriosis. I kept it a secret and only shared it with my closest friends and even then, it simply became known as “endo” – some mystery condition which seemed to cause me pain or be a reason why I couldn’t attend a social occasion. I didn’t talk about it and I certainly didn’t blurt it out onto the internet as I am doing it now.
Having shared my message for over 7 years through this website and on social media, I thought I would share some of my thoughts and personal experiences on why I believe endometriosis doesn’t get nearly enough publicity and attention.
Endometriosis doesn’t kill us
I hate that diseases kill people. I hate that many of those diseases take a very long time to kill people. I have seen it happen within my own family – my dad died of brain cancer and it totally stripped him of the whole man that he was. It was heart-breaking and degrading and I honestly believe it is a big reason why I decided to study Naturopathy because I needed to understand the body better and what could have contributed to his death.
With endometriosis we may not be dying but we are suffering. Many women are suffering every single day and they are simply told to live with it and put up with it. They get little sympathy or care from anyone because endo is simply some random women’s condition which hey… it doesn’t kill you, so it can’t be that bad? Hmmm that just doesn’t seem right to me.
Cancer sucks in a big big way but so does endo. Why can’t we have more support for these women? Why do women have to simply suffer in silence?
I have heard of a number of women committing suicide because they just couldn’t face another day with living with endometriosis. I am sure messages of “just put up with the pain” don’t help these women!
Women are scared to share about endometriosis
I am not blaming anyone for not sharing about endometriosis – I certainly didn’t feel comfortable sharing about it for over 15years! It is hard to talk about and even harder to explain to people. Most people switch off the minute you mention painful periods or blood or lesions or anything to do with the uterus.
To be honest, I think the reason we are scared to talk about it is perhaps from previous experiences of being told “it’s all in your head” or “it’s just period pain” and being dismissed for years. We don’t want to appear like we are only sharing to gain attention – which is an interesting trait only women seem to struggle with 😉
I know from my personal experience that I didn’t feel comfortable sharing about it as I was embarrassed about having endometriosis. It felt like a dirty condition – like I had done something to cause it. I felt shame about having endometriosis and certainly didn’t want anyone to know that I had a messy condition that affected my fertility!
It is a condition which affects women 99.9% of the time
Let’s be honest, men still run our medical systems. As much as I wouldn’t wish endometriosis on anyone, there have been times when I have wished that my Gyni could just feel what I was feeling for just one day. That he could re-hash his words of “just live with the pain”, once he had actually experienced it.
I honestly believe that if men had endometriosis, there would be better support and systems in place to at least take care of us better.
Why shine a light on something you don’t understand?
One of the key things I notice time and time again when it comes to endometriosis is that very few people seem to know anything about it. They know what it is and can describe the condition to you but ultimately, there is very little true knowledge that exists online or within the medical system about endometriosis. You will find websites and research papers that still cite really outdated information about endometriosis or contradictory information which just confuses people.
The reality is, that if we shine a light on endometriosis, we are shining a light on something very few doctors and surgeons truly understand. That makes people look foolish and stupid and nobody wants that. Endo is hard to explain and even harder to treat – so why point out the big fat elephant that is standing in front of any group of women, if you don’t actually have any real answers?
It is an embarrassment to the medical community
Okay, I had to say it but let’s be honest – endometriosis medical treatments suck. There are no guarantees of any of it and it is embarrassing to do countless hysterectomies, cut women’s bits out time and time again, subject women to hormone treatments like Lupron (which now has lawsuits against it) and honestly think you are doing a good job of treating endometriosis. (read more here).
It’s a great little money spinner but where is the care and protection for these women?
I get the stories in my inbox every single day and they are not pretty. These women are being subjected to the worst advice and treatments and are then just abandoned with “there is nothing else we can offer you”. This makes me so incredibly angry and so incredibly sad.
With every surgery a women is going to have more adhesions and places herself under risks. Hysterectomies don’t cure anything. With every hormone treatment, she is depleting herself of vital nutrients and altering her natural hormone balance (designed for a reason!). The more pain-killers she takes the more she ruins her liver health which ultimately affects her ability to manage endometriosis.
What happened to “first do no harm“? Why can’t we treat endometriosis with options which have no side-effects or long-term consequences first and see if we can repair the situation naturally before opting to cut a women open or subject her to synthetic hormones?
It hasn’t been easy to share my message. People question my motives. Women question my theories and approach. But here’s the thing… I am an advocate for women with endometriosis. I shine a light on this condition around the world in over 120 countries.
I share my message because I give a pillar of hope and possibility for women. I do it because I myself have seen the changes and experienced the shifts for women who have taken onboard the advice I give. I do it because I believe endometriosis needs an advocate like me to truly shift the status quo. These women deserve better and my approach truly changes lives.
And perhaps my message will reach that poor lost women currently contemplating suicide because she simply doesn’t believe there are any alternatives that can help her… please hang in there. I promise it can get easier and you can live a normal life.
This Post Has 2 Comments
Yes! Other items your artical inspired and reminded me about:
A. it can be hard banding together and sticking up when your unsure of being able to commit to gatherings or community events.
Leading To B
. What about when you have your sicknesses are trying to eat healthy barely have a pay check or enough food stamps to get you through the month.
But can’t work a full time job due to being incapacitated by pain randomly,
it’s not looked at as a true disability so in workplace it’s a huge detriment and (I understand why people wouldn’t want to say anything.) due to this lack of understanding that it effects individuals differently and can be crippling
Amen to this! You stated everything so eloquently. It’s so easy to feel all alone in the struggle; thank you for being there for al of us and bringing us together.