Kathy

What are your endometriosis symptoms like? 

Endometriosis is hard to live with at times. I have unexplainable pain in my pelvic areas and my lower back and legs. I have a hard time walking and doing things. I had surgery 7 months ago. I had a hysterectomy they removed fibroids. I thought it would take away the painful part, the pain in my lower back and the very bad pain in my legs. When it’s very warm movement is very good when it’s cold it’s bad and the pain is worse. I used to think of very warm places in my mind so I could cope with what was happening to myself. I was not told anything about Endometriosis I researched it on my own and then asked about it. The one question I asked my doctor was is there a cure for Endometriosis. He said “well they did your surgery and it was major, so he wants to rule out endometriosis.” I got my first period when I was 12, I was hospitalized for three days and it happened almost every time. I ended up in hospital there I meet with a woman doctor who put me on a pill, it helped me. That was in the 80s she listened to me then she moved away. So yes, I had pain all my life. You learn it’s okay it’s just part of life then comes a day when it changes you the legs just say no, no more it’s like there just too tired. I don’t know why or what to think right now I just want to get back my lifestyle of working and enjoying life, what I really want is my life to be better. I hope this is helpful to someone out there. Thank you for letting me share.

What was your journey to diagnosis like? 

I was diagnosed with endometriosis in September 29 2020 by obgyn. After being referred to her by my doctor took 6 months to see her. I think I had endometriosis when I was younger but they didn’t know what it was. I put up with pain all my life.

What has your experience with treatment for endometriosis been? 

Before surgery I called my doctor and would let him know that I was in lots of pain legs back pelvic areas so he got me on pain killer right away. COVID got in the way of a lot of my treatments like surgery it got rescheduled to May 10th 2021 I was told there was lesions on my intestines I was told to stick to the diet fruits and vegetables and chicken and fish is what I now live with at times this is hard to get because I don’t have a job right now, no leg power to walk long enough or enough energy to that.

How does endometriosis affect your day-to-day life? 

Endometriosis has taken a lot of things like my job I was doing home care, taking care of others. It made me happy, now I just stay home or go out for rides. I also tried walking around in stores but I felt like I am in other people’s way because I cannot walk fast enough. I finally had sex but found it still hurts, it should not any more, it affects my marriage. I have mood swings. I don’t feel like I know myself anymore 😕 I don’t want to go out, I try to find something positive when this happens. I talk to my kids I try exercise and I end up some times in more pain. I want to date my husband and just have fun. This is really what life should be like fun, happiness, getting out doing things I used to do .

How does endometriosis affect your emotional well-being? 

I am emotionally drained tired and I only sleep 4 to 5 hours a night which is very hard for my husband and family. I get to a point where I don’t want sex. I get upset when no one cares that I’m just too tired it’s how I feel.

How has endometriosis shaped turning points in your life up until now and looking toward the future? 

When I was younger I missed school when I was in hospital and friends would ask what happened in those days you didn’t want to say ya my period happened. I went back to the work force in 2013 and love it I would get tired would have days I wished I stayed home because of the bleeding was bad and emotional stressing over if I was leaking out some where. I worked had lots of pain trying workings through the pain came back home sleep. The last day I worked I felt like I couldn’t move so got my husband to move my legs so I could go to work. I am missing is the way it was before getting this sick. I am trying to get my English done and other classes needed for a PSW class. I still want to do this.

How have you found hope and support in your endometriosis journey? 

I am now going through physical therapy hopefully it’s going to be better I now see my doctor when things come up if other signs show up I get the tests I need I let my doctor really know what’s happening with myself. He trying to get things done right there so we are not waiting to long like before. It’s taking its toll on my husband and my girls. My boys don’t understand and my mom has never hard of endometriosis in her life same with my aunt cousin because no one in the family has it. It makes me feel sad because they don’t understand.

What do you think healthcare for endometriosis in Canada should look like? 

I think we should educate ourselves like the younger teenagers and parents of teenagers education in the schools health care providers that don’t understand there is no cure for Endometriosis if there is no one has told my family or myself educate them about Endometriosis so when we need help they don’t just send us home saying take Advil or Tylenol for the pain or think your just looking for pain killers. Teaching the new doctor that are coming out of medicine and the ones that are out there now that yes Endometriosis is very real and we need help and support to get through this just like any other diabetes cancer other disease out there just help us it is all we are asking for we never asked to get Endometriosis it just happened.

What do you think it is important for people to know about the experience of having endometriosis in Canada? 

That having Endometriosis changes your lifestyle everyday. I just want people to know that we are not lazy or don’t want to work it’s our bodies just don’t have something or we struggle trying to do things.