Endometriosis Awareness Month - My Story To Diagnosis

01/03/2017 17:03 GMT | Updated 02/03/2018 10:12 GMT
Marjan_Apostolovic via Getty Images

March is Endometriosis Awareness month. What is Endometriosis? Many people who have Endometriosis have not heard of it. I was showing symptoms of Endometriosis for sixteen years before I heard the name of this condition. Endometriosis is a condition when tissue which grows inside the womb, lining the uterus, grows outside of the womb. This condition can devastate lives. Women live with chronic pain. It is debilitating. I should know, it brought my life to a halt every month for a number of years. Endometriosis affects two million women in the UK. This is my story to diagnosis.

My period started around my eleventh birthday, the summer between leaving junior school and starting secondary school. My mother sent her sister, studying to be a GP, into my room to "talk" to me about it. She didn't tell me anything I hadn't heard in the school playground. Starting at a secondary school for girls, we had a similar "talk" about periods. What stands out to me to this day, decades later, was the school nurse reassuring us about blood loss by holding up a metal thimble, "You'll lose about a thimbleful of blood, it's just the lining of your womb." With three periods worth of experience, I felt doubtful, but I did not say anything. I do not remember what she said about period pain.

Four years later, period pain had me throwing up. I curled up and writhed around in agony. I was missing a lot of school each month and my mother, who was a working single parent, knew nothing about my absences... Until she got a letter from the school. I did of course speak to my GP about how dreadful the pain was during menstruation, he probably suggested cuddling up to a hot water bottle and that I should "get used to it". At school, periods were never an excuse to skip P.E. classes, in fact the exercise would "do you good". I was miserable, I wanted to die, so I tried to kill myself by overdosing on over the counter painkillers. It didn't work. I got up and went to school, feeling even more tired than usual. Endometriosis can cause severe fatigue and depression along with the chronic pain.

I did eventually get talking to a school friend about how painful the "cramps" were. Luckily for me, my friend had an older cousin who also suffered greatly, but swore by an over-the-counter painkiller that targeted period pain. Score! Through pre-emptive and to-the-clock popping of huge pills it was adios period pain. I lived without serious pain for two whole years. Around my eighteenth birthday I started getting bouts of dizziness, the room would spin and I would end up on the floor. I felt graceless. The dizziness struck at any time, including whilst I was driving. Once, I felt the spinning sensation come on and pulled over. I lay down in my car until it had passed. Endometriosis can cause anxiety and vertigo. This is dangerous.

To combat the anxiety I moved home looking for a fresh start. Miraculously, doing the one of the most stressful things a person can do, move home, relaxed me and the vertigo vanished. With the vertigo dealt with and the period pain masked with my 'never-leave-home-without-it' box of painkillers, I felt the world was my oyster, so I started backpacking. Returning to England, I found the box to my "miracle cure" had changed and so had its formula. The "new and improved" formula did not do the trick with my pain any more. The magic spell was broken. The pain was back, and it was back with vengeance. Each month I curled up and howled at the moon, and threw my face to the toilet bowl to throw up with the pain. I was in bed for days. Endometriosis can devastates lives.

At this point in life I was working for myself. So business hours were when I was not in pain. My love of travel from my backpacking days continued. I travelled with my partner, who I had met during my 'pain-free-due-to-pills- days', to Mexico, to learn a little Spanish and eat a mountain of tacos. One day, walking around sight-seeing, I felt pain with each footstep. I was not on my period. I did go to see a doctor and in broken Spanish I communicated the pain I was feeling, and with a quick scan he replied, "Endometriosis." This was the first time I had heard this word, and knowing it has changed my life.

It was sixteen years from the first time I visited a doctor to mention how uncomfortable I felt during my period, until the time a Mexican doctor said to me that I had endometriosis. Sixteen years for a diagnosis. Mine is not an uncommon story. Young women, all women, need to hear of endometriosis. Doctors do, nurses, teachers, mothers. Sufferers should not go through years of pain before finding out the ways in which they can be helped. Awareness of the condition will help. Awareness of Endometriosis.

For more information on Endometriosis, please go to these pages: