Help me access endometriosis treatment

Oh hey! Thank you for being here. If you’re reading this, you probably know me, but if you don’t… I’m Leah. I’m almost 32 and I’ve recently been diagnosed with a disease called endometriosis, after years and years of struggling with “mystery” symptoms.

The waiting list for me to get surgery with a specialist, even with severe, stage 4 endometriosis is 2+ years. During which the disease will more than likely progress, and I risk losing ovaries, bowel endometriosis, having a cyst burst that can cause sepsis, and so, so much more.

So in a couple weeks I’ll be traveling to a renowned endometriosis centre in Bucharest for excision surgery, where the surgeon will essentially cut the disease out of me and separate all the organs that are stuck to each other right now.

I’ve hummed and hawed about doing a GoFundMe because it’s so ridiculous to have to crowd-source money to get treatment for a progressive disease that should be being prioritized and treated by our healthcare system, but this is what so many people in my position are doing.

Between credit and a bit of savings that were set aside, I have just enough to make the trip. But when I get back, I have months of different types of treatments and physiotherapies to do. Because I don’t work full-time anymore, I don’t have insurance for any of these things.

For anyone interested in the abridged version of my endometriosis journey:

A few years ago I saw a gynaecologist for extremely painful period cramps and issues with my bladder/bowel. He sent me for an MRI and told me I have a large fibroid. He told me there wasn’t much that can be done for the fibroid and to “wait and see”

Fast forward to recently, and I’m in a ton of pain on my period (like sweating, screaming, stabbing pain). I had another MRI done, which was sent to another gynaecologist located in another province where I’m currently living.

When I go to the appointment, the gynaecologist tells me that my MRI shows that I have something called “kissing ovaries”. He diagnoses me with stage 4 endometriosis and says the endo is likely the source of all my pain and bladder/bowel issues, not just the fibroid. I had heard of endometriosis before but didn’t really know what it was until I started deep diving into it. But suddenly everything SO MUCH made sense.

Since puberty, I’ve had painful periods that I believed were normal, until a few years ago when they started getting unbearable. I also struggle with dizziness and fatigue. Trying to work full time became increasingly difficult as I often struggled to focus and keep my eyes open, and then the pain on my period made me unable to do anything once a month. Since 2019 I haven’t worked full time as a result.

For years, this disease has wreaked havoc on every aspect of my daily life. For a long time, since I didn’t have a diagnosis, I didn’t understand what was wrong with me. But now I know, and now I know how to treat it. Even though endometriosis is a chronic disease with no “cure” per se, excision surgery with a specialist is my best shot to getting back my normal life… where I have energy again, where it doesn’t feel like someone is repeatedly stabbing me in the abdomen.

Thank you, thank you, thank you.