Alice's Story
"I have nothing to lose by empowering myself to take control and never letting my endometriosis win".
MY EXPERIENCE
I first experienced severe gynaecological pain when I was only 12, before I’d even started my periods. This crippling pain continued to visit me every month for a whole year until I eventually started my periods. Once I started my periods, the pain got even worse. It reached the point where I experienced it every day of the month and was rushed into A&E twice monthly (once during my period and once during ovulation) and would often be given morphine as pain relief. I kept being told it was ‘normal teenage cramps’. I also lost a lot of blood, easily using up to 12 tampons and pads an hour. Due to the amount of blood lost, I became anaemic and suffered from chronic fatigue.
I was 14 and my quality of life was non-existent; I could no longer go to school because of the pain, chronic fatigue and being in and out of hospital all the time. I finally had a laparoscopy in 2010 and diagnosed with endometriosis. I cried with happiness when I was diagnosed with endometriosis because it meant my symptoms were no longer 'phantom' pains but actually a real condition! Since my diagnosis I have been on GnRH for four years which has allowed me to complete my school education.
HOW LIVE WITH MY ENDOMETRIOSIS
At times having endometriosis has been isolating, debilitating and restrictive: I have never known adult life without it. I know I wake up in pain most nights but whether I like it or not, my endometriosis inadvertently shapes my life and who I am.
Every day I dare myself to challenge my endometriosis, be it teaching someone about it, empowering a fellow sufferer or breaking a taboo by simply talking about it. I became an ambassador for Endometriosis UK because I wanted to help the charity to continue to educate, empower and break down the taboos in anyway I could.
Eventually if enough of us tap the wall it has got to tumble — and it doesn't matter whether it is for us or for our grandchildren — we cannot suffer in silence forever.
- Alice
Hayley's Story
"I’ve always prepared for surgery by talking about it to friends and family beforehand. I find each operation a little easier to manage as it seems more familiar and therefore less daunting."
MY EXPERIENCE
Since my diagnosis, I have had seven different operations. These have been in the form of laparoscopies and hysteroscopies. I also had an ovary removed during one of these surgeries.
Because my last operation was so successful, I have felt very fortunate to have a rest period of over a year without any intervention. This operation seems to have been really helpful in minimising my pain and the heaviness of my periods. As I also have adenomyosis, I understand that a hysterectomy will most likely be something I will have to face in the not too distant future.
HOW I MANAGE HAVING SURGERY
I know my particular after effects of anaesthetic and which drugs agree with me and which don’t. As I live alone, recovering from surgery is always difficult.
I do still suffer with pain on a daily basis but have just accepted that this is something I will always have to live with. I work full time and have a busy social life and have recently started a new relationship with a very supportive and understanding partner. I have a great network of support in terms of my boyfriend, friends, family and my colleagues and boss at work. They are all very aware of my condition as I am very open to discussing it.
I have raised some awareness by my frequent open and honest discussions with female friends and colleagues. I have displayed posters at work in the staff toilets to alert women to the particular signs and symptoms. I have also taken part in two sponsored walks in the past and attended Endometriosis UK support groups where I have made a lifelong friend. I feel endometriosis shouldn’t ruin your life, it’s just important to learn how to manage it.
- Hayley