What are your endometriosis symptoms like?
I originally thought my Appendix ruptured when I first was diagnosed with it. With my flares, my symptoms range from Sharp stabbing pain that makes me unable to stand, often combined with a migraine and nausea. Then there’s the one, dull throbbing pain for about a week. Followed by nausea, emotional ups and downs , then hot flashes. And the last one.. is basically the one that has me in hospital- Sharp knife like pain, on one side; that feels like my Appendix ( this time usually the front) and typically it’s a Hemorrhagic cyst rupture.. followed by nausea and vomiting.
What was your journey to diagnosis like?
I actually never know how I will feel during the day. Now, my periods had always been painful. But it always depended on whether or not it was a Seizure, Migraine or painful cramps that hit. Sadly most doctors told me: it’s totally normal. It wasn’t until I saw my mothers gynecologist when I turned 27, that I finally received a diagnosis of Endometriosis. The ridiculous thing? Originally the thought was it was something completely different. ( PCOS most likely. ) And yet it wasn’t until I saw a gynecologist that specialized in Women’s health that she had a idea as to what was going on.
Now with a diagnosis, but still no treatment; my options are limited. Not only that, but without treatment and my seizures now under control- the hormones that should have risen to a certain level as a teen are doing so now; making it painful and stressful emotionally (especially since half the time I end up crying before my cycle). It’s also incredibly difficult because it’s hard to feel secure socially ; as a lot of the time I may not want to go out with friends or if I’m not feeling up to it, to school. And emotionally it makes difficult because sometimes it feels like the supportive wall is crumbling.
What has your experience with treatment for endometriosis been?
Currently I’m not in treatment. I’m still trying to find out which would be better for me, as it’s either Ablation, Hysterectomy or Hormones. However , I was told most hormone medications do interfere with my other medications. The one I did try- Orillisa made my seizures and migraines worse. And although it’s a new medication, I am hesitant to do so again.
How does endometriosis affect your day-to-day life?
I would say the impact is that at least 1 a month I am unable to do my usual activities such as Rock climb, go to social events etc. typically because I am in pain or just not feeling well emotionally.
How does endometriosis affect your emotional well-being?
Emotionally, I would say my anxiety increased a little bit since I was diagnosed.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
Depending on severity and treatment , I am most likely not able to have kids (which I actually have wanted). Relationship wise, it isolates me because I feel that people aren’t accepting of it. Career path? I think it’s changed quite a bit since being diagnosed as epileptic & a Endometriosis warrior. I’m unable to be a actor, fighter pilot due to Epilepsy. It’s recently been brought to my attention , I may not be able to go into Archeology or a Travel field. Why? I may need to be close to a hospital in case of severe complications or a severe flare.
How have you found hope and support in your endometriosis journey?
So far.. I am still on my journey. I haven’t received that support yet.
What do you think healthcare for endometriosis in Canada should look like?
I would love more money to go into Women’s Health. And Research to go towards Endometriosis treatments that will not cause undue stress, interfere with medications, or trauma. And for Canada to put money into funding more Clinic’s and Surgery in provinces for Endometriosis, as well as hiring Gynecologists that specialize in Endo or Women’s Health.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
With all the bragging about healthcare research Canada does .. we definitely don’t put enough money into Women’s health. As someone who has ended up in Emergency, with a endo flare myself.. they often don’t think “Endometriosis “ or PCOS. Instead, they go straight for ‘Ruptured Appendix’. That’s why, it’s always best to advocate for yourself or if in the ER- have someone who will do it for you.