My Story with Endometriosis Part 1: Living With Endometriosis
My story with endometriosis isn’t a story I was sure I’d ever share. I’m definitely a perfectionist, and my experience with endometriosis has been far from perfect. This experience has brought up feelings about myself that I thought would be too painful to ever admit. But these are what these awareness months are all about – sharing the hard truths and realities of what it’s like to live with these conditions, and discussing the dire changes that need to be made in order to make life better for those who are still suffering.
What My Periods Felt Like
So, we’ll start from the very beginning. I was 12 years old, and in my heart, I knew there was something deeply wrong with me. I’d get my periods and the pain was absolutely excruciating. People often ask what it feels like to have endometriosis. For me, every period felt like a battle.
leading up to my periods
The whole week leading up to my period I’d be marked with a fatigue so intense that it was genuinely hard to function. I’d start feeling like I’d need a nap by 12pm, and I would drag myself through to the end of the school (later work) day, at which point, I’d be heading to the couch. As an adult, cooking dinner, cleaning, or going to the gym, was completely out of the question the week before my period. I was quite literally surviving. That week I’d also have quite a lot of pain. If 10 were the most pain I’d ever experienced, my PMS week was a 5. Then my period would come.
the pain
It’s hard to even write out what my periods were like, because I have such sadness and shame that I accepted living life this way for so long, especially in my line of work where I’m constantly advocating for women’s health.
But in the name of total honesty, here’s what it was like: I’d get my period, and on that first day, the pain would go from a 5, straight up to an 8/10. From the moment I woke up, I took Advil extra strength, praying to God it would kick in within the hour, and I’d probably take another 3-4 extra strength Advils as the day progressed (more than what the label suggests). This would just take the pain from an 8, to a 6 – bearable but not great. I’d also have to take an Advil before going to bed to try and just be able to sleep through the night. This was rarely successful, as I still woke up every night for 2-3 hours, writhing in pain, often ending up on all fours in my bed crying.
Aside from the excruciating pain, there was one MAJOR symptom that should have really clued me and my health practitioners into an endometriosis diagnosis, and that was severe pain with bowel movements during my period. The pain would only last for a minute at a time, but when it came on it was the kind of pain that took your breath away. I literally could not breathe when it happened. It felt like I was being stabbed up my rectum. I’d breathe through this pain that would wax and wane, and it would finally go away once I was able to go to the washroom. Going to the washroom made this pain 10x worse but it was the only way for it to go away. I often wailed and cried out in pain when this would happen. As my symptoms worsened as I got older, I eventually started to experience rectal bleeding on days 1-2 of my periods as well.
Also, as I got older (and my disease unknowingly progressed), once per year or two, I’d have something I called a ‘pain flare’. When I’d have a ‘pain flare’, usually on either day 1 or day 2, my pain would go to a 10/10, and I was truly unable to function. To sum it up: I couldn’t speak, I couldn’t stand, I’d cold sweat, and I would lose my vision due to the pain intensity for about 30-40 minutes.
Typically, after 2 days the pain would completely disappear. Outside of my periods, I’d get some pretty significant cramping (again 5/10) when I ovulated but it was manageable and only ever lasted a day or two.
Why I Didn’t Receive Treatment
I did try to speak to my health care providers about it many, many times. They all told me it was something I’d grow out of as I got older (spoiler alert: I didn’t). They all offered my birth control, which when I was younger I took, and it did help! They all told me there was nothing they could do, and that it was probably related to my PCOS (spoiler alert: it wasn’t). Many of my doctors told me period pain at this intensity on days 1-2 was actually normal.
Before I became a Naturopathic Doctor, I totally believed that period pain was normal because clearly all the women in my family had a major problem with this too. All of my female relatives had severe period pain. It was just accepted in our household that periods came with a lot of pain. As a 12-year-old, and even into my 20s, who was I to question this?
Over this time, I also spoke to a lot of Naturopathic Doctors, Acupuncturists, Osteopaths, you name it, in an attempt to control the pain. Never once was I able to manage the pain seeing these practitioners. Interestingly, endometriosis was also never brought up as a potential diagnosis. Acupuncturists and Osteopaths told me repeatedly there was a ‘blockage’ on my right side, but that was all they could ever tell me. I also want to clarify that the care they provided was still good care – endometriosis just wasn’t a common or well-known diagnosis at the time, and we just didn’t know how advanced things were internally. Over time, I gave up trying to manage it. Nothing worked, and I resigned myself to living this way.
In my early 20s, I was officially diagnosed with PCOS, a condition I had also long struggled with, and I had gone off to complete my Doctor of Naturopathic Medicine degree. At this time, I came to understand that the pain I was in was not normal.
Again, a lot of shame and self-blame comes up for me here – I knew it wasn’t normal, so why did I avoid a diagnosis? Why did I sit on it for so long? Why didn’t I fight harder to be evaluated? To be honest, I was so deep into dealing with my PCOS diagnosis. The aesthetic symptoms of PCOS (acne, hair loss, etc.) were so out of control and as a mid-20-year-old it was deeply distressing and took priority. At the time I guess I thought my ‘invisible’ period pain could wait. But when I really reflect back on it, I know I didn’t confront it because I wasn’t ready to deal with what it would mean to have endometriosis. I knew the complications that were associated with endometriosis, and I just wasn’t strong or brave enough at the time to look at it and accept that this was what was happening to me.
Coming Up
In Part 2, I dive into why I finally started looking into my period pain, and what happened when I did. This is the longer, more painful part of the story for me. But it’s very important that everyone understands what can come alongside this diagnosis.
A Final Word
In the meantime, if you’re struggling with Endometriosis, please know that you are not alone, and despite my experience, there are things we can do to help!
If you want more information about how Naturopathic Medicine can help support your endometriosis, you can check that out here!
Ready to make a change?
If you want to learn more about how Naturopathic Medicine can support endometriosis, feel free to reach out to the clinic, or book a complimentary consult with me here.
With loving compassion,
Dr. Alessia Milano, ND