March is Endometriosis awareness month. Endometriosis is probably a topic unknown to many or thought of as a heavy period, or female issue. I am going to be writing about my diagnosis and my life living with the chronic illness, endometriosis, in hopes people can understand it more and bring awareness to an illness that is hard to diagnose and harder to treat. 

 I am not one to usually publicly share this sort of thing, but this is something I have unknowingly struggled with for years and was only diagnosed properly a year ago. I was diagnosed with stage four endometriosis (stage four is the worst stage). Since my diagnosis, I have had surgery and have been able to adjust my life to make living with this illness easier. It is important to talk about as women’s health is something almost taboo. No fault to any woman in my life but I did not realize all the pain and symptoms I had were not normal. I thought bleeding 20-plus days a month was just part of being a woman, I thought debilitating pain after doing any exercise was normal. I am talking about this so that anyone who experiences similar symptoms is not alone. 

I will also preface this by saying I am not a medical professional, everything I am writing is my experience and research I have done on the topic. 

What is Endometriosis?

Endometriosis (en-doe-me-tree-O-sis) is an often-painful condition in which tissue that is similar to the inner lining of the uterus grows outside the uterus. It often affects the ovaries, fallopian tubes and the tissue lining the pelvis (Mayo Clinic). 

There are four stages:

• Stage 1 (Minimal):
  Characterized by few, superficial implants and mild adhesions. 
• Stage 2 (Mild):
  Features more and deeper implants than Stage 1, with some scar tissue, and minimal inflammation. 
• Stage 3 (Moderate):
  Involves many deep implants, small ovarian endometriomas (cysts), and scarring. 

     Stage 4 (Severe):
    Marked by deep implants, large ovarian endometriomas, extensive scarring, and potentially  significant adhesions that can lead to organ dysfunction

Symptoms I have experienced: 

Pain 

Ever since I first got my period, I remember it being very heavy. As the years progressed and I was in high school, I would get the most excruciating cramps and pain during my period. There would be times I would curl up on the floor in a fetal position because nothing would help. I remember in the height of my basketball career getting sharp pains during games and practices. If I ran too hard, it would feel as if I needed to release something and oftentimes I would run to the washroom to try and relieve the pressure. This continued on throughout my life, anytime I exercised too hard I would get these pains. I thought this was a normal thing and how my body reacted to exercise.

I love exercise so I would mentally prepare myself for these pains and complete the exercises I was doing, like basketball, the family marathons, and many other activities. The older I got the more severe the pain would be. I often found myself lying on a bathroom floor, puking or on the verge of passing out from the pain I was experiencing. No heating pads or ibuprofen were ever enough to ease these pains. I also started to notice that these pains were coming more frequently not just when I was on my period, but at all points in the month, especially when I would try to push my body to exercise.

Once again not knowing that this wasn’t normal and I am not one to complain about pain I just continued on with my life. I recall a moment last year when I was doing stairs with a friend, I got such bad pain I could barely walk back to the vehicle. I kept thinking just get to the truck and get home so I can go through this pain alone and on the floor in my bathroom because it is hard to explain to people what I felt. The pain never seemed to end. Endo has been compared to the same and sometimes worse pain than those who have experienced heart attacks and labor. I have not experienced those things, but imagine for those who have felt those pains, going through that multiple times a month, every month. 

Bleeding (skip this section if blood makes you queasy) 

Growing up in a family of all girls (my poor dad) we discussed periods a lot. We would talk about our symptoms and pains at length. My sisters and I all had heavy periods and we would be told and tell ourselves that the pain, length, and flow of our periods is because of genetics. Yes genetics play a role in a girl’s menstrual cycle, but there are some signs and symptoms that are unrelated to genetics.

As I got older and was in my late 20’s my bleeding was getting intense. I would bleed 20 or more days in a month, not always heavy and crazy, sometimes just spotting. Regardless of the amount I thought this was just how my life was. I never questioned it because I am a girl and we bleed.  Bleeding everyday has many side effects, fatigue, embarrassment and depression.  Bleeding so frequently is not normal and I never realized. I remember talking with some girlfriends about how much I was bleeding (when I wasn’t on my period), I am talking about filling pads, and they looked at me shocked and said that is not normal. Even after my surgery that was supposed to help with this symptom I still find myself bleeding abnormal amounts.

The endo has spread to many of my organs, including my bladder, so I often find myself peeing out blood as well. This symptom is the one that causes me the most distress in life because it is so random and mentally, bleeding every day is challenging. 

Other Symptoms

As many people know, I decided to become vegetarian (pescatarian) about 5 years ago. I did this because I noticed that some of my pain and discomfort stemmed whenever I would eat red meat. Since I was a child I noticed my stomach would grumble, have sharp pain and just overall I would feel not right anytime I ate red meat. Being from a family in the prairies, beef was a staple so who was I to say no. Once I moved out and was able to experiment with what made me feel my best and I realized that a diet with no red meat and eventually no meat at all made me feel my best. I started to do some research and it is said that people with endometriosis often have more severe flare ups and are more likely to have symptoms when ingesting red meat.  This research validated my thoughts of meat and the effects on my body as my current vegetarian diet has lessened the symptoms I used to feel. 

Exhaustion. People living with any chronic illness can relate to this symptom. Although I work more than most people and live an active life, I am always exhausted. It does not matter if I get an 8 hour sleep at night, I cannot physically go throughout my day without having a nap or a lay down of some sort.  I have tried caffeine, I have tried getting a good night’s rest, I have tried supplements and no matter what I end up taking or doing I cannot function without a nap in a day. I used to be embarrassed by this fact and felt judged by people who always comment on the amount I nap, but I know for me and my body I need this. Chronic illnesses are no joke and fatigue is one thing that will always be a part of my journey. 

Diagnosis

The crazy thing about endo is that you cannot diagnose it with scans, tests, or bloodwork. The only way to confirm the diagnosis is through laparoscopic surgery. My gynecologist said that during the surgery they diagnose and clean out the excess tissue all in one go.  I had my procedure in the summer of 2024. From that point forward I was able to learn more about my illness and ways I can ensure I have the best quality of life. I was diagnosed with stage four and after seeing the images from my surgery, I understand why. My bowel, bladder, and fallopian tubes were and are the most affected. I saw a picture of a normal bowel and then saw mine and I felt like I wasn’t looking at the same part. My gynecologist has been great in explaining and telling me about my diagnosis and next steps and I am just grateful to have been diagnosed so some of my questions have been answered. 

Now 

Where do I go from here? Now that I know what I am dealing with and understand my situation more I already feel better. I workout now with no pain since my surgery. I remember going for my first run and thinking where is the pain? Why do I still feel fine even after running 5km?” I am amazed that by having the surgery I was already feeling different and feeling like I should have felt all along. 

My doctor and Gynecologist have both given me so many options of how to treat and prevent major symptoms in my life. Different things work for different people, so I am currently on a path of finding out what works for me. Hormone treatments, Hysterectomy, medications, lifestyle changes are all things I am exploring and trying out. Of course I am young so a hysterectomy is something doctors advise against. Since I am stage four my chances of ever conceiving are pretty much nothing. It was a heartbreaking thing to hear that I might not ever be able to have a child, but as I have sat in my diagnosis and understood more, and as I have grown as a person, I have realized that it is okay to not have children. 

Moving forward, I want to spread awareness of this chronic illness, to hopefully show younger girls that they should be proactive and really advocate for themselves to get diagnosed. This is also a message to all women to speak openly about women’s health to the younger generations so that they will know when something is not normal and so they don’t brush it off thinking this is just how life is. 

So after all that, thank you for taking the time to read about my experience. If you have questions at all and want to reach out, please do. If you know someone with endo, grant them grace as it is not an easy illness to live with. Different them my other posts, and hoping I will be back to writing about my travels soon.