What I wish I had been told about diagnosis

Monday, March 05, 2018

‘I wish I had been told that you have to fight to have your symptoms taken seriously’.

Jilly lives in London and is one of the London support group leaders.

Since my first period at the age of eleven, I knew something wasn’t normal. I had severe pain during the week before my period, which lasted for twelve days. My periods continued to get worse, until I decided I had to go to my doctor at the age of fifteen. By then my periods were lasting about fourteen days.

I was prescribed the pill, which did nothing to reduce the bleeding. I tried different types of pill, which didn’t work. I was just going to have to live with it.

At age seventeen, I decided enough was enough. I went to the internet looking for solutions, and I came across the Mirena coil. I had to fight to have this fitted as the doctor informed me it was for women who had had children. I was very fortunate because for five years the coil really reduced my symptoms. I was able to go to university and start my career with manageable pain.

Unfortunately, five years later, the pain came back. It had migrated to my lower back, top of my legs, and throughout my abdomen for three weeks of the month. I was also starting to have problems with painful sex, nearly constant UTI's, and bowel and bladder issues. I went to my GP complaining about the pain. They took bloods which came back inconclusive and I was told to take paracetamol and ibuprofen.

After one A&E trip, where I was given painkillers and told to go home, the pain didn't stop so my GP started me down the testing path for kidney problems. I had numerous ultrasounds and x-rays and was told that the pain was likely to be in my head, and there was nothing more they could do for me. They refused to prescribe any more painkillers. At that point, I gave up. I was tired of fighting.

In 2016, I decided enough was enough, I fought for another scan, this time of my full pelvis. In the ultrasound, they found an 8 cm cyst, and for the first time I was referred to a gynaecologist. When I had my appointment with the gynaecologist he told me that all my symptoms sounded like endometriosis. That was the first time that endometriosis was ever mentioned. They immediately put me on the surgery list.

Thankfully, I stumbled upon Endometriosis UK’s website and called the Helpline, where I spoke to the most amazing woman who reassured me and pointed me to the many charity resources that allowed me to educate myself. In December 2016, nine years after seeking help for my periods, I had a diagnostic laparoscopy.

When I woke up after surgery, the first thing I asked was if they found anything, because I needed to make sure I wasn't crazy. When they said they found endometriosis, I felt vindicated: that all my fighting had been worth it. I am fortunate because my laparoscopy has given me my life back. I was able to go back to work, and start my life again. I still have pain, but I now know how to access the support that I need.  

Through my journey I have had to fight every step of the way. The biggest lesson I learned is that you can’t stop fighting for answers, even if you’ve been dismissed.

Help us to educate and empower young women by signing our petition to get Menstrual Wellbeing included in the curriculum at https://www.change.org/p/ngibb-menstrualhealth