Lyndsey's story

Lyndsey talks about how endometriosis has affected her life

Endometriosis has had a great impact on Lyndsey's life, find out how she is learning to manage the condition.

“This debilitating, invisible disease is no longer going to control me and my life.”

My experience

I was diagnosed with endometriosis in 2004 and have Stage 4 severe endometriosis that affects my womb, ovaries, fallopian tubes and bowels. I also suffer from neuropathic pain.

When I was 15 years old I was put on the contraceptive pill by my GP to try and reduce my pain and heavy periods. However, the continued pain around period time led to regular time off school, then later, university and work. I’ve had 5 laparoscopies and 2 courses of hormone treatments. I’ve tried a variety of medications to help with my pain and symptoms. I see a pain psychologist and an acupuncturist as part of my ongoing treatment.

Endometriosis has a huge impact on my daily life. The pain is constant and I’ve been in daily pain for nearly 3 years. This led to not being able to make plans as I wouldn’t know how I would feel from one day to the next. This has affected my relationships with my partner, family and friends but I’m very lucky that they are all very supportive and understanding. My work has also been affected and although my employers have been supportive they have now commenced ill health proceedings against me and there is a real prospect I may lose my job due to my illness.

How I manage my endometriosis

After a period of feeling quite low and depressed I knew I had to start getting back some control over my life. I’ve recently completed a chronic pain management course which has helped me learn techniques and strategies to help me deal with the pain. Now I’m able to manage gentle exercises and stretching. Pacing myself, changing my diet and reducing stress have all had a positive effect and I find I am able to see friends and family more often now.

I attend my local Endometriosis UK support group and have found it so beneficial and empowering to meet other women in similar situations and it’s a really supportive environment. Due to the help, support and friendships I’ve made at the support group I was delighted to take the opportunity to co-lead the group and have recently completed my group leader training.

I’ve come to accept that I will be in pain on a daily basis. I try to remain positive as I believe I can tackle pretty much anything endometriosis throws at me if I think positively. I’m a stronger woman and know more about my body and mind due to suffering from endometriosis. I know I will get better and I am getting better! This debilitating, invisible disease is no longer going to control me and my life.

- Lyndsey

Lyndsey is the co-leader for the Endometriosis UK Edinburgh Support Group.