Sandra's Story

Learn about Sandra’s experience with endometriosis and how she manages the condition.

“Meeting other women with endometriosis lessens the isolation that endometriosis can bring with it.”

My experience

I was diagnosed with endometriosis about 7 years ago, although the symptoms started about 8 years ago. I had cramps that started before my period and got progressively worse. Eventually I was in pain every day to the extent where some days I could not stand up straight or walk properly as the pain was down my legs and up my back. Lying curled up in bed in the fetal position around a hot water bottle became a common way of coping. When I went to my doctor, I was incredibly fortunate as endometriosis was one of the first things she suspected and referred me to a gynecologist for a laparoscopy.

During the laparoscopy some of the endometriosis was removed, but some lesions were close to my kidneys and major blood vessels so those were left alone. The whole diagnosis process took about 1-1.5 years. I know how lucky I am that it was so quick. I had not heard of endometriosis before talks with my doctor, nor had any member of my family. I had to do my own research by consulting the internet.

After my laparoscopy, I was then put on a birth control pill and told to take it continuously with no break in between. I decided to come off the birth control pill not too long ago as I wanted to give my body a break and it hasn’t been too bad. Only recently has some severe pain started coming back one or two days a month.

How I manage my endometriosis

I’ve always had the mentality that I am in charge of my endometriosis, it is not in charge of me. With that in mind, right from the beginning I took a more holistic and alternative outlook when it came to how I was going to manage it. I found making changes to my diet have made a big difference to my pain levels. I am in pain every day, but as long as I can keep it minimal and relatively under control, I almost forget it’s there some days.

I can get quite tired and my energy can be low, so I really have to watch my schedule and make sure I have plenty of time to just relax and have early nights. I exercise 5-6 days a week, either in the gym or with yoga, which helps with overall health and stress levels, as stress can increase the pain a bit for me.

Why I became a Support Group Leader

When I moved to Edinburgh there was not a support group, so it just made sense for me to apply to become a group leader. I have always enjoyed volunteering and also wanted to ensure that I put a positive spin on having Endometriosis.

Meeting other women with endometriosis lessens the isolation that endometriosis can bring with it; there is a mutual understanding of how hard it can be some days. I have watched the women in the group gain confidence in themselves and in talking about endometriosis and I feel this will only benefit the wider issue of awareness and understanding that we need for the cause.

- Sandra

Sandra was the Support Group Leader for the Edinburgh Support Group from 2012 to 2014 – she has since returned to Canada.