I have endometriosis. I found out about 4 years ago. I had been having extreme pain during periods on and off for years, was even taken to the ER by ambulance once because I couldn't walk due to pain and collapse at the mall (while buying advil and pads on my way home.
Finally got an ultrasound, found out I had an 8cm cyst on my ovary, months of follow up later I had to call an ambulance because the pain was so bad, and still had not seen a specialist.
Had emergency surgery cyst was 10 cm at that point, 2 nights in hospital, couldn't pee on my own for days. That was when I learned I had endometriosis, my surgeon told me it was "obvious", she could see it everywhere during my procedure. At my 6 week follow up the ultrasound showed a new cyst, already 4 cm. Spent a year trying to manage cyst growth and pain, nothing worked and I had surgery again 13 months after the 1st to remove another 10 cm cyst.
This time when the pathology report came back it wasn't just a cyst, it was a borderline tumour. I had an appointment at the cancer centre within 6 weeks, and less than 2 months after the second surgery I was in the OR again to remove an ovary, fallopian tube, my appendix, and my omentum.
Pathology found a malignant tumour in my appendix, as well as confirmed endometriosis on everything that was removed. I was lucky, the tumour was a rare type that's extremely slow growing, I would not need chemo or other cancer treatment because it was found so early. I'm now 30 years old.
The past 3 years have been trying one thing after another to control my pain I have missed weeks and months of work at a time due to pain and side effects of treatments. Luckily I have had no new cysts.Birth control helped my pain but after a while raised my heart rate and BP to dangerous levels, while also increasing my migraines from a couple times a year to almost daily.
We tried an IUD, had to have it inserted in the OR because of my pain- it would have been impossible to do it in the office. The Mirena caused such extreme pain that I could not work for nearly 3 solid months, it was removed in the OR after the 3 month trial. I am just starting another new medication to see if this helps but there is almost nothing left to try.
I have been passed over for full time positions at work due to my health issues,not directly (I think), but.its hard to interview well when in constant pain, and chronic absenteeism doesn't look good when competing for jobs. I have gained over 35 lbs in 4 years due to medication side effects and decreased physical activity. The new med I am starting may also make me gain more weight.
Many days I can hardly move. If I try to do basic household chores within 10 or 15 minutes I am in so much pain I can't continue. I cant sweep a floor, wash dishes, clean my bathroom, or even do laundry without pain most days. Sometimes I need to sit on the floor of my tub while showering, because if I don't sit down I will pass out.
My family lives on the other side of the country, my roommate has also missed work due to my health issues. Taking me to the ER, days off driving me to and from surgery. He's missed social events because I cant be left alone at times.
I am so tired of being in pain. My doctor is amazing, but there's only so much she can do. I cant take NSAIDS anymore because I've used them so much in the past 4 years that I get stomach pain when I take them. My tolerance to drugs has gone up, even narcotics barely touch the pain, and I cant work while taking them, so I just suffer.
I dont know what I'll do if the new medication doesn't work, and that scares me. I just want to be healthy and enjoy my 30s, so far it's been nothing but misery this decade.
Thank you for your interest in this consultation with the Canadian Pain Task Force towards an improved approach to better understand, prevent, and manage pain in Canada.
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Canadian Pain Task Force