Advocate for yourself.
Endometriosis takes a VERY long time to be diagnosed since there is no real test to determine whether you have it or not except for a laparoscopic surgery.
My symptoms began when I was 12/13 years old, when I first began getting my periods. When you are that age, it is shrugged off as “this is what having a period is like”.
This couldn’t be further from the truth – it is NOT normal to be in severe amounts of pain that render you unable to move. It is NOT normal to bleed for weeks a time. It is NOT normal to need copious amounts of painkillers/anti-inflamamatories and trips to the ER.
It took numerous visits to the ER, various types of birth control pills, ultrasounds, blood tests, urinalysis, overnight visits hooked up to morphine, and an extremely unnecessary appendectomy over the course of 12 years before being able to convince your family doctor (GP) that maybe you should see a gynaecologist.
I was 25 when I first saw a gynaecologist, who performed a laparoscopic diagnosis of endometriosis and did an ablation (more on this later, this is not something that should be done). From there, I was instructed to continue taking my birth control pills, but continuously. This went on for another 2 years, but I still was not having any relief. I got a new family doctor, and requested a referral to an endometriosis specialist. Another failed surgery, this time an actual excision, followed by 2 years of Lupron, and I was back to my starting point.
Taking matters into my own hands, I discovered the Centre for Endometriosis Care thanks to my friend Jordanna, and am now on my way for my third, and hopefully final surgery. You can read more about my personal journey to diagnosis, and how I got to this surgery in my two previous posts here, and here.
My point here is, TAKE CONTROL OF YOUR OWN HEALTH. Fight for tests, for diagnostic laparoscopies, and only ever get excision as a surgery option. Do not take medications that you are not comfortable with. Do your research, ask a lot of questions, find different doctors if they don’t answer your questions. Do not do things that make you feel uneasy and as though the doctors recommendations are not in your own best interests. In my experience, the doctors who avoid answering you, don’t advocate for you, and just push medications that mask the problem, not help reduce it, are not the right doctor for you. It took me just shy of 20 years to stop just believing what the doctors told me, and start ensuring that me, and my health, were the number one priority.
The Canadian health care system always seems like something people outside of Canada envy – however with our affordable and free health care comes an array of problems, including wait times, age restrictions for testing (I currently can’t get a bone scan done in Canada until I am 50+ even though I have been on a medication that has been proven to cause long term bone density loss and osteoporosis. My previous gynaecologist was content leaving me on Lupron until I reached the age of natural menopause instead of further treating my problem, and don’t even get me started on my feelings about that drug from hell.
This is hands down the worst part of an endometriosis diagnosis – the only positive part of actually being diagnosed is it affirms that you weren’t ‘crazy’ and that the pain was normal. Once you have a legitimate reason and a name to the pain, it becomes a lot easier to begin the steps to manage it.
There is no cure, there is only management.
Support Groups – there are SO many of these online, thanks to the availability of social media. I am part of several on facebook alone including Nancy’s Nook, Lupron Warriors, Endometriosis Support Alberta, and The Endometriosis Network Canada. I also follow the Centre for Endometriosis Care in order to continue to learn more about the disease and treatments available.
I have also been extremely vocal about my endometriosis and journey on my Instagram account, and as I have spoken up about my upcoming surgery even more I have been able to connect with a lot more women .
While suffering from this disease is terrible, and knowing others have to go through what you do too, there is something incredibly powerful about being able to connect with others who truly understand exactly what you are going through. They are someone to complain to, vent to, and cry with.
Never, ever, be embarrassed about your disease. There are a lot of stigmas attached to anything that is chronic, but remember this: ENDOMETRIOSIS IS NOT YOUR FAULT.
I have made sure to let my family and friends know that I not only have this disease, but I can often not make it to social gatherings or family events due to pain or exhaustion. I have missed a lot of things over the years, and you know what? It’s ok. Sometimes I don’t even remember to text people back for a few days. Those who care about you will understand. There is absolutely no point in overdoing in for one event, because it will prevent you from doing anything else for a couple of days.
My supervisor, manager, and coworkers are all aware. Working in a male dominated industry, I get the shell shock looked when I tell them, since I also usually have to tell them that endometriosis involves my girl parts, but them feeling uncomfortable is on them, not me. I have learned that the more honest I am, the more understanding they are when I call to say I just can’t come in some days. Before I left for this surgery, I have never felt more supported leaving work than ever before – their priority is me, my health, and healing properly over the work I need to do, and this makes all the difference in the world. I am not stressed about work going into surgery and recovery, so I don’t need to put extra pressure on myself to heal faster.
Things I have with me at all times to help manage the pain are heat pads, either my portable ones that don’t require an outlet or the ones I can stick to my clothes/body, anti-inflammatories (Naproxen is the one that works the best of them all for me, but use what works for you), and activated charcoal to help manage my nausea and digestive system. If you find me, you will find all 3 of these things on my person or within reach. There is a lot of things I do throughout each day depending on the level of pain I experience; some days I finish work and go home to bed and stay there until the next day, other days I go and get in a killer workout, cook dinner, clean the house, and still have energy leftover. Every day is different for me, and your days will not look the same as mine, Sally’s, or Martha’s down the street.
It is YOUR body. Put yourself first, no matter what that means to you. In the meantime, if you want someone to talk to, or just have someone to listen to your frustrations, you can reach me on Instagram, or shoot me an email.
You will get through this, one day at a time.