Meet Robyn. She's 26, studying for a PhD in History and fighting a daily battle with pain.
'My problems started when my periods did, at the age of 13. After a few months my mum took me to the doctor about my irregular, heavy, painful periods and I was told it was just my lot in life. I was a woman, periods were meant to hurt.
Throughout my teenage years I was put on multiple contraceptive pills to help regulate my periods and had numerous scans and tests and quite a few misdiagnoses. I wasn’t even allowed to see a gynaecologist until I turned 18. At the age of 20, my pain changed from its monthly pattern to daily, crippling pelvic pain. I was constantly told the pain was all in my head, there was nothing medically wrong with me.
It wasn’t until I had argued my way into a laparoscopy three years ago that I was finally diagnosed with endometriosis. Endo is a condition where tissues similar to those that line the uterus and shed each month are found elsewhere in the body, usually in the pelvis. The deposits of endometriosis don’t show up on scans and can only be seen with keyhole surgery. It can cause painful periods and ovulation, abnormal bleeding, pain during or after sex and infertility.
It also leads to fatigue, bowel and bladder problems. I had been told for nearly ten years that there was nothing wrong with me. I had been passed from doctor to doctor, told I was experiencing growing pains, IBS, certainly nothing gynaecological. Even when a scan showed multiple cysts on each ovary I was given a diagnosis of Polycystic Ovarian Syndrome and put on injections which induced an artificial menopause. Despite a family history of endometriosis, and the fact that while there is no known cause, there does seem to be a genetic predisposition, when I asked about it, I was told it was impossible, I was too young.
On average it takes eight and a half years to be diagnosed with endometriosis, yet the condition affects one in ten women worldwide. That’s 176 million women. Of the women who have it, one in ten of those have the worst form, stage IV. I am one of those women. My endometriosis was growing in my pelvic ligaments, the Pouch of Douglas, the back of my uterus, my bowel, rectum and vagina. There was so much I had to have further surgery to cut it out. While this massively improved my quality of life, there is no cure for endo. Mine has come back and I am on the waiting list for another operation to remove it.
Currently I take twelve different pills a day, attend three different hospital departments (gynaecology, urology and chronic pain clinic) and pelvic floor physiotherapy. I have to work from home, sometimes use a walking stick and rely on my wonderful mum to help me with daily life. Yet people still believe that the pain I live with isn’t that bad. ‘Women’s troubles’ are something to be shushed and hidden away, not something to shout about. But since my life is pretty much at the mercy of my lady parts, I will shout about it.
Northern Ireland is the only part of the UK not to have its own specialist endometriosis centre. We face longer waiting times for urgent surgery than our counterparts across the water. The Endometriosis Support Group in NI has been a massive source of support and help to me personally and with them I have been campaigning for better awareness of and treatment for endometriosis. We desperately need things to change so that when a young girl goes to her GP exhibiting all the symptoms of endometriosis, she doesn’t have to wait nine years like I did for an answer. So that she is believed and listened to and doesn’t have her life taken away from her by this debilitating condition. So that a 26 year old woman doesn’t have to sit in her house, crying with pain, her life on hold while she waits over a year for surgery to let her live a normal life. We’ve waited too long, the wait should be over.'
For more information on endometriosis, visit https://www.endometriosis-uk.org/ Follow NI Endo support group on Twitter @endosupportni
Courtesy of Client & Patient Council