There is no cure but there is also a lack of support for women with Endometriosis, especially in Vancouver. It's difficult to find resources or to find information as to what's the best treatment or surgery for this condition. And how do I know this? Because I have been dealing with endometriosis and its variety of symptoms since 2008. Being a Registered Nurse, I trust other health care professionals to know what is best for me and my health; at the same time, educating yourself and knowing what is best for you is extremely important because this disease affects each woman differently.
When I first was “diagnosed” with Endometriosis (my family doctor made a very educated guess based on my symptoms otherwise diagnosis can only be confirmed through laparoscopic excision) I was 25 years old. I had been on birth control since I was 11 years old and had been off of it (by personal choice) for almost 2 years when the random pains started. When I researched Endometriosis at the time of my diagnosis, I found a short paragraph stating it causes period pain (which is a complete understatement for those who have experienced this pain) and can cause issues with fertility. I thought to myself, I’m young and otherwise healthy so I'll be fine. Had I known what I was going to go through these last 5 years of my life, I would have looked further into this disease and what preventative measures could have been taken then. In 2015, I was also told I had an adenomyoma; even though I did have my uterus operated on, I now have diffuse Adenomyosis. I'm 35 years old, married, no kids, have had 3 surgeries, and even though I am better than I was before my third surgery, I still suffer from chronic pain, nausea, and fatigue…… and those are only a few of the issues I face on a daily basis.
Currently, I cannot have gluten, dairy (I cheat and still eat small amounts of cheese but I pay for it of course), soy (which seems to be in everything!), sugar (still working on this), caffeine, alcohol, and I try to avoid red meat because all these products make me really sick and it's all thanks to my endometriosis. The constant fatigue, nausea, and pain make working as a full-time RN really difficult. I worked part-time at a skin surgery centre and on my days off I tried to recover and rest but I had other responsibilities and obligations just like everyone else.
Guilt and trying to be my old self drove me for a long time to do things and attend events but I have now realized the impact a few busy days has on my body. When I read about getting enough rest or people telling me to get some rest, I would kind of roll my eyes and think, who has time to rest? There are a million things to do! And the reality is, there will always be a million things to do but if you aren't well, you won't even be able to do one of those things.
I choose not to go out as much, not because I don’t want to but the energy isn’t there and I don’t feel comfortable being out for too long as I don’t know if the pain is going to get worse. Aside from the pain, getting ready to go somewhere uses up half of my energy and I'm not even talking about doing my contour and highlight girls! My life has changed a lot and I am in the process of learning a new norm for myself because I can't go back to being who I was.
To be completely honest, I don’t know where to start about the changes I have gone through. It took me time to find out what I do know about Endometriosis and Adenomyosis; I have tried to include links to various resources around the Lower Mainland within my articles. I want you all to know that I am not sharing my story to gain sympathy or to say look how sick I am, feel sorry for me.
The sole purpose of me starting this site is to get people educated, informed and talking about this terrible disease so others suffering know they are not alone no matter what stage of Endometriosis they have. This is not a competition of who is more symptomatic or who has had more surgeries; we need to listen, learn and support each other in our battle with Endo.
Endometriosis and Adenomyosis can change you and your life. I experienced sadness, disappointment, anger, and depression when I first became sick. Even now, I still have days where I am trying to understand what I have, am and might still go through and it can be difficult to comprehend it all.
I have felt weak and defeated so many times battling this disease but I know I'm not because I have come a long way. Even though there are many things I can no longer do, I am going to do something about Endometriosis.
BSc Psychology, BSc Nursing