What are your endometriosis symptoms like?
My pain would last weeks then subside for a few weeks then come right back. Sometimes it wouldn’t really stop. I couldn’t stand up straight , it would always be sharp knife like pains and then just tight cramps. Even sitting sometimes would cause a pain to shoot right up me. I dreaded emergency because I knew it would be a even more painful experience. Morphine wasn’t enough.
What was your journey to diagnosis like?
I was 19 , not long after my daughter was born , that I started having bad abdominal pain . I was hospitalized and treated for a week with antibiotics intravenously, telling me I had pelvic inflammatory disease . I was sent home and I just dealt with it until it would get bad . Many , many emergency visits , either I was looked at as a drug addict or somehow faking it because they couldn’t find anything conclusive . Same routine . Sent home with Tylenol 3 . I started to think I was just a wimp and that some women have painful period episodes . I moved and had a new gynecologists who thought I had a hernia and it wasn’t anything to do with my uterus. I finally found one who decided to do a laparoscopy. That is when they found out it was endometriosis. I was good for awhile but it came back , birth control didn’t work either , I also turned down a drug to put me in a menopausal state. I was 28 at this point and wasn’t wanting to keep going like this . I asked for hysterectomy and was deterred because of my age . That was 1997. For years after that not much changed as far as behind being diagnosed.
What was your experience with treatment for endometriosis been?
Being diagnosed in the late 80’s early 90’s there wasn’t much access to anything . Sometimes I had doctors who didn’t even know what endometriosis was when I told them I had it . Skip forward to present and it’s getting there . I don’t think there was one thing that helped . It was a combination of many that made some years livable . I stayed active , I began to meditate with pain management in mind . I did find taking a narcotic before it was intense really helped . It helped enough that I could manage the pain or it took it away . Too bad having those kind of medications isn’t easy to be prescribed . I get it but the alternative isn’t ok either
How does endometriosis affect your day-to-day life?
I found myself mentally defeated sometimes . Just tired of being in pain , not getting answers , being looked at like I do it for drugs and told to deal with it basically .You couldn’t tell anyone because it wasn’t considered anything but a thing you have as a woman . I felt very alone , forgotten in a sense .
It affected all aspects of my life . Many work days missed , many relationships ended , family outings , functions , just enjoyment in life .
How does endometriosis affect your emotional well-being?
I did end up having 3 children . One miscarriage . Through my pregnancies I had no pain and no problems having them . Although a surprise to me as I was told I only had a chance . It can happen . Now that I’m in menopause it has given me better quality in life . I get some pains once and awhile but just like a bad cramp . But overall it was strange when I realized one day that I wasn’t getting continual pain anymore . I stopped the narcotics, I take Advil now . I look forward to the future of endometriosis and the advancements with treatments . One day we may have the answer
How have you found hope and support in your endometriosis journey?
The only time I felt truly heard was by two new doctors I was referred to. They helped me so much. Life savers!
What do you think healthcare for endometriosis in Canada should look like?
More access to education for all Heath care providers . More acknowledgement of abdominal pain issues as maybe being more than just period pain . More clinics for pain management and pelvic pain issues
What do you think it is important for people to know about the experience of having endometriosis in Canada?
That the pain is real , it is debilitating and there needs to be more awareness