What are your endometriosis symptoms like? 

It all started as painful periods. Then it was a period that went on for 7 months straight. Today I’m 23 and 1.5 years into artificial Menopause. My endo still causes me to live in chronic pain, fatigue, and brain fog from it. I have bowel problems that can be quite bloody and I regularly cry about having to use the washroom because of it. People say endometriosis is painful periods but is far more all-consuming than that, It affects me every moment of every day. Generally, it is aches and pains and medication side effects, I can live with that. Sometimes though it’s a flare where I’m too weak to go anywhere for weeks. My symptoms are life-altering.

What was your journey to diagnosis like? 

I got my period when I was 13. Almost immediately it was a nightmare, it was incredibly painful, it was super heavy, it went on for up to 10 days sometimes. My pediatrician put me on birth control when I was 15 because I was anemic from the bleeding, but the bleeding didn’t let up, it was the same as it had been every month. So, the doctor had me start stacking my birth control (not taking the week off to get my period). That worked for three months. I don’t know what went wrong, but I know that a very terrified 16-year-old me got a period that lasted for seven months. I bled every day. I remember the day it started, I was at a fair with friends and all of a sudden, I let go of a clot and lost half a cup of blood, it was all down my legs and I had to go home. I say that because it prefaces how traumatic this experience would become for me. I missed school for months completing schoolwork at home and online too embarrassed to explain that my period was when I was there because I didn’t think anyone would understand. I was in emergency every two or three weeks first seven months, always the same complaint “I still have my period, I’ve been bleeding for months, I’m in so much pain”. I would get sent home with some new amount of birth control pills to take every day the most was 8 pills a day. It took six months of this to get a referral to a pediatric gynecologist. The pediatric gynecologist decided the best course of action was to give me an IUD which worked to get the bleeding to stop and lighten up a bit for the first few months that I bled normally. The pain never went away though I complained of severe sometimes debilitating pelvic pain for five years. The pediatric gynecologist followed me as a patient till I was 21 she said she would do my laparoscopy so that I wouldn’t end up at square one when I was handed over to another OBGYN. I waited four months for that surgery. I remember being excited that I might finally get an answer (possibly some relief) for all of the symptoms that I’ve been having. I remember waking up to talk to my doctor afterward to find out that I have really aggressive stage four endometriosis. The frustration and the many other large emotions that come to mind when I think of those years where I asked every medical professional I saw for help and no one listened to me till it was that bad breaks my heart on a daily basis.

What has your experience with treatment for endometriosis been? 

My treatment started first with a laparoscopy. However, it had very little effect on my overall pain and quality of life. This meant more steps had to be taken. I was then put on a GNRH antagonist to stop me from producing estrogen and to slow down my endo tissue development. I have been on a drug called Lupron combined with a hormone replacement for a year and a half now. For those of you unfamiliar with the drug it puts you into artificial menopause. It gives me all of the same symptoms as normal menopause, but it can be reversed. I have an IUD to deal with what I know is adenomyosis. I see a regular OBGYN and because of the severity of my case and the fact that I am a horrible squeaky wheel about receiving the care I deserve now, I also see an excision specialist. I have been waiting on excision surgery for a year, but it keeps being postponed due to COVID. I also see a pelvic floor physiotherapist, a naturopath, and a psychologist to deal with my endometriosis and related issues. I have several other unrelated health issues that require management of endometriosis symptoms to be crucial to not upset they already carefully constructed balance of managing my health. I always tell people I operate with a very small margin of error because of this. I live in chronic pain because of this condition which also means that there’s a large pain management aspect of my treatment I see a specialist who manages those medications, and it is a constant guessing game which drugs I tolerate and that help and which ones make day-to-day functioning a lot more complicated. I have a lot of issues with the fact that they are more than willing to hand out very strong painkillers than they are to push for treatment like surgery that might remove the problem rather than cover it. I’ve also had endo-related bowel problems for several years I only in the last month got a colonoscopy to assess cyclical rectal bleeding associated with the condition. Those results in combination with an MRI I had done determined that my Endometriosis tissue has stuck my uterus to the outside of my bowel and is now also appearing on my abdominal wall extensively. This news will hopefully push me up the priority list for excision surgery. I’m a lucky case because there are three doctors involved in my care who are willing to give up surgery time to treat me when my time comes up. However, for now, I play a waiting game every day to see whether I get a call that will tell me I get life-altering invasive surgery in two weeks. I would like to also mention that all of this comes with a tremendous extra cost for myself and I’m sure others like me. I get Lupron injections every 2 1/2 months that come with a $1500 price tag, hormone replacement medication isn’t cheap either. Pain killers are also very expensive. Most of these meds are covered but only because I go through the appeal process for every single one of them with the help of my doctors to get them covered. I have two drug coverage plans because of my age I have my university plan and I still qualify under my parents, I have to keep both because we wouldn’t be able to afford my drugs otherwise. This condition can be financially crippling especially to young people who do not have the resources that I have. I’m sure at some point in life I will struggle with those financial burdens as well.

How does endometriosis affect your day-to-day life? 

I often meet myself with tears when I consider the toll that this condition has taken on my quality of life. I’m only 23 but I live in chronic pain and illness because of this condition. The thing that makes that so heartbreaking to me is how taboo and layered it is to talk to anyone about that. I’m a university student and I work as a respite worker to children with disabilities. I adore these roles I have formed for myself in life, because of these things I work closely with many different people I like that a lot. In all honesty, though there are very few of these people I would feel comfortable explaining what I’m going through to. This brings up what I think is the hardest for me to deal with in relation to my endo, it’s really isolating. Societies misconceptions that Endo is just painful periods tend to shut down conversations with other people with periods because they think that’s all it is. I’m sick of educating people so I just don’t bring it up. There are lots of medical factors that this disease causes for me that would clearly impact my quality of life. I could go on and on about what an inconvenience it is to deal with the pain and the menopause symptoms. Talking about what it’s like to talk to my peers about what being in menopause is like or even what menopause is to draining to even talk about. I could talk about the pep talk I have to give myself to get out of bed and face another day of being in pain. I could explain that I cry when I know I must have a bowel movement because of how uncomfortable it is. I could talk about how tiring it is to constantly be told you’re doing all the right things; you’re doing everything you can but right now we just have to wait until you can have surgery. But in talking about those things, I would have lost all my audience because of my age my friends and family can’t relate to my experience at all. I would like to raise a factor that I think is unique to younger people with this condition though because I find it is the hardest part of finding a quality of life for myself; it is incredibly isolating for young people who know they have endo because it complicates social relationships that are just being formed. My endo makes my relationships with friends rocky sometimes because I suddenly need to cancel plans, we have because I’m in too much pain to go. Those situations are hard because I so desperately want to be out with my friends dancing or traveling but I can’t because of how sick this has made me. at least my friends are mostly long-term friends who understand what I’m going through because they’ve watched it progress over time. Dating is a completely different story though, having endo complicates dating so much. I can and have radically accepted that this is something I must deal with. It’s a lot of emotional baggage to have to tell someone else your story and then explain your boundaries in hopes they can accept it. I hate to say it but in the time of Tinder and even meeting people in person at this age it makes dating very difficult because I have no interest in casual sex. I know how tiring explaining the restrictions my endo causes to my sex life and drive to new partners is and it’s often not worth my time because those boundaries aren’t respected. I’m in a relationship now but I remember how fearful I was when it started that if I laid all my cards on the table and explained that I couldn’t have kids that I have all these boundaries to take care of my health they would be overwhelming. It made me so upset that there wasn’t anyone I could talk to. I decided on a take it or leave it kind of approach because I didn’t have the emotional capability to be justifying my worth to someone. When I told my partner, he told me he didn’t love me any differently because of this layer of who I am. It could have just as easily been the other way and that’s scary. These are experiences that none of my peers can relate to, so I just don’t talk about them and I become further isolated. I’m sick of feeling so alone on this journey. I hope that whoever is reading my experience can empathize with this. If your experience is like mine, I hope reading this lets you know you’re not alone.

How does endometriosis affect your emotional well-being? 

I have other mental health conditions that affect my emotional well-being that are not at all related to my endo. I would like to be clear though that my endo makes it harder to manage those things. It affects my sleep when I’m in pain which can be really destabilizing. Looking for the right medication combo to treat my endo is hard because they have to adjust my psychiatric medication to prepare for mood swings that the new meds might cause. When I’m in a flare the anxiety and fatigue of not knowing when it’ll stop or how bad it’s going to get is enough to really wear me down. The balancing act of managing all of these things is a very tedious and tiring process. It requires you to learn how to be your own advocate and to develop an insane amount of self-determination (“I’m learning to thrive out of spite” is my personal attitude). These actions are rarely recognized but I celebrate them internally and I hope others who read this learn to do the same.