What are your endometriosis symptoms like? Endo symptoms are vast and vary, but I’ve had such excruciating pain that it caused me get sick often and even led to fainting numerous times. I had long periods from the very beginning, at the age of 10, that were 20-30 days. I missed school a lot of days from the intense pain or went and was beyond miserable.

What was your journey to diagnosis like? My period was early, heavy, painful and long. I got it at the age of 10 and wasn’t diagnosed with endometriosis until the age of 32/33. I had been going to family doctors while living in Prince Edward Island, Nova Scotia, and Alberta, and it took me completely losing it, bawling and refusing to leave my family doctor’s office in Alberta when my period was non stop for 9 months and counting. He finally agreed to send me to a gynecologist/surgeon for further testing.

What was your experience with treatment for endometriosis been? I have had multiple surgeries for endo. The first was laparoscopic surgery to remove the endo and massive amounts of scar tissue was found, even though this was my 1st surgery ever. It was passed off as no big deal. The relief didn’t last long, but since this was 14 years ago, I can’t remember how long exactly. Then the gynecologic surgeon decided I needed an IUD and it would help with some of the pain. It did, with some and the relief from having periods that ranged from 30 days to 10 months each was great! I had the IUD in for 3.5 years. But, the pain kept increasing. So it was decided that I would need a hysterectomy. The gynecologic surgeon wanted to see if I’d be able to keep my ovaries, so I was given a monthly injection 6 months leading up to my hysterectomy. The pain didn’t ease so it was decided I would need a total hysterectomy. This is when I moved from Alberta back home to Prince Edward Island for more family support and care. My IUD was removed with the hysterectomy in 2013. I wasn’t healing well and knew something was wrong as it was new pain mixed with old pain. The same surgeon went back in, and said if he hadn’t done the hysterectomy and cleaned me out himself, that he wouldn’t believe it was done. I was full of endo, scar tissue and adhesions. So he cleaned me out again. And to add to my fun, during that surgery, an artery was cut, the main one that goes down my left leg. Unfortunately as time went on,  I wasn’t healing and having all the same issues again. He was concerned with doing yet another surgery that year, my oxygen & blood pressure continued to drop lower than the previous surgeries and they had a hard time waking me. So 2014 I had another laparoscopic surgery, and as predicted, I was full of everything again. I had mentioned to the surgeon when describing the pain and its effects on what was left of my life that my bladder was tender when filling and voiding. I was referred to a Urologist and ended up having bladder surgery that I did not need. I was told my options were bed rest or surgery every 6 months, indefinitely. I was not okay with either option and told the Dr. no to them both. I found visceral manipulation, and it is very slowly making some progress. I have been going to visceral manipulation every 3 weeks for almost 4 years now. I am extremely glad I found this, but do wish there was a quicker, and cheaper, option!

How does endometriosis affect your day-to-day life? My intestine is fused to where my cervix was, my intestine is also fused to my bladder and my bladder then is fused to my abdominal wall all with adhesions. Needless to say it is all very painful, hurts to sit, stand, lay down, and the more I do the more I swell and my pain increases. My life, as I knew it, was over. I have been on disability as I cannot work with all of this. My spouse couldn’t deal with any of this and we parted, so it has effected every single aspect of my life.

How does endometriosis affect your emotional well-being? This has had a huge impact on my mental health. Every single day I have to pick what I’m going to push through and what I have to give into. When the pain is excruciating, I pretty much shut down and am stuck in bed so my mental health suffers. When it is all overwhelming and I push myself to get out and about a bit more, even something easy like having a friend over, or going to a friend’s house, or getting groceries, then I suffer even more physically. The more I do and move, the worse my swelling is and that increases my pain. It is very rare to have a day where I feel like I am winning both mentally and physically. As already mention, all of this has led to separating permanently from my spouse, it has caused depression and insomnia.

How has endometriosis shaped turning points in your life up until now and looking toward the future? Endometriosis has changed my life as I knew it. As mentioned previously my husband left as he couldn’t handle it, I’ve lost friends due to not being able to socialize. I haven’t been able to work for 8.5 years. That along with the pain and suffering is extremely hard mentally. I wasn’t able to have children due to endo.

How have you found hope and support in your endometriosis journey? My parents have been amazing, they have been very supportive and have tried to understand all of this as best as they can. As well as a few of my best friends. I’m very thankful to have researched and found visceral manipulation. It is helping, very very slowly, but I would be so much worse without it. I also joined a Facebook group for support.

What do you think healthcare for endometriosis in Canada should look like? It should be so much more helpful and accommodating. There is no reason why women are passed off when they come in with violent cramps and excessive bleeding. It would also be amazing for more options besides surgery. That should be an absolute last resort.

What do you think it is important for people to know about the experience of having endometriosis in Canada? That the pain is real, and that even though it’s very hard to get help, it’s out there somewhere. You aren’t alone.