My name is Kirsty-Louise, I’m 27 and I have endometriosis.
Sat nervously waiting for my name to be called out, this is my 7th GP’s appointment in as many months. Sat running through in my head exactly what I am going to say. 15 minutes later I come out feeling frustrated, holding back the tears, yet again. Why is it that so many medical professionals ignore this pain and various symptoms I suffer with daily? This is my story over the last 10 years.
During my teenage years I suffered from heavy periods, sickness & migraines. I was told, you will grow out of it, that it’s all part of being a woman. I was put on the Depo Injection at the age of 14 to try to stop the heavy bleeding and other symptoms. However, it didn’t help. I was convinced that it was all part of just being a woman, that it was my fault that I just couldn’t handle the pain.
Everyone else suffered just as much as I did, right?!
When I entered my early 20’s, I became sexually active. The periods and pain got worse. It was then that I experienced one of the most debilitating symptoms of endometriosis, painful sex. I went back to my GP, I was told to use lube and to try extra foreplay. I was told that plenty of women have pain during sex and I will be fine.
My symptoms didn’t really come to fruition until I was in my mid 20’s, and this is where my struggle with many doctors really began. I have all the classic symptoms of endometriosis: the heavy and painful periods, bleeding in between periods, painful sex, bloating, chronic fatigue & bladder and bowel issues. I was told by one doctor ‘it’s IBS’ take these tablets and change your diet and you’ll be absolutely fine. It didn’t help, nothing helped. After breaking down to another GP a few months later, I finally got referred to my local gynaecologist. I was full of hope, finally, I thought something is going to change.
However, that hope soon turned into despair when I was told ‘You’re too skinny, you’re too young, you don’t have endometriosis, there is nothing wrong with you.’
There were days and still are days when the pain is just so bad, I can’t physically get out of bed. I am drained, I feel as though I am being stabbed repeatedly in my womb and ovaries. Painkillers don’t ease the pain, heat doesn’t help, nothing helps. I lie there helpless, completely consumed by pain. All my loved ones can do is sit and watch while I cry and scream. I have to crawl to the bathroom, I can’t even lift myself up to have a drink. Why can’t I be normal? Why, day in day out, do I have to deal with this pain? It’s not fair, I didn’t ask for it. I have repeatedly gone to hospital, with bleeding so bad I soak through pads and tampons in minutes, to be dismissed with pain killers and told ‘we won’t look into your pain, it’s a bad period, take paracetamol and rest’.
The months rolled by and the symptoms got worse.
I work a 50+ hour job, which is stressful at the best of times, mixed with uncertainty about my health and the daily struggle of getting out of bed. I was heading for a melt-down.
Due to the fatigue, I spent every night and weekend in bed, unable to lift my head off the pillow. Soon, it began to affect my relationships. My boyfriend barely touched me, my friends stopped asking me to go out. I used to lie there and think, is it all in my head? Why am I not strong enough? Why am I not good enough? That’s when the depression crept in, that’s when I started to lose myself. That’s when this illness nearly took my life.
I went back to my doctors, expecting the same response as usual. However, this time I had a new doctor. After breaking down, she spun her chair around put her hand on my knee and said ‘I believe you’. That moment will never leave me. She told me ‘it’s not all in your head’ and scheduled me for my exploratory surgery. I walked out of that appointment feeling validated, I knew that I wasn’t insane, that everything that was happening to me was real.
I can’t explain the joy I finally felt!
When I awoke from my surgery, my surgeon came around and informed me the news that he had found cysts and pockets of endometriosis on my womb and ovaries. I cried, and I cried, I finally had the diagnoses, and no one could ever take that away from me. My pain was real. I couldn’t help but think back to the doctors, ex boyfriends and friends who didn’t believe me and who thought I was a hypochondriac.
Fast forward to today, 2 surgeries down and currently waiting to go back to see my surgeon who, I have no doubt, will put me back on the list for more surgery.
Every day, I fight with my body, every day I’m in pain, every day I struggle. Some days I wake up and wonder how I will get through the day. Some days I don’t even get out of bed at all.
Endometriosis has affected my life in ways I couldn’t even have imagined. I have days where I wonder what my life will be like in 10 years’ time, will I be able to have children? Will I still be able to work and actually have a life? With the right help and the right awareness and education many others won’t have to fight the same fight as I did. With research we can discover new drugs to help women and also find the reasons as to why this disease happens and maybe, just maybe, find a cure.