Endometriosis: Gemma’s Story

Hi, my name is Gemma Binns and I live in Liversedge, West Yorkshire in England.

Here’s my story. I started my period when I was 10 or 11 and straight from the get go they were bad. Very painful and heavy, however they started off fairly regular so my mum decided not to do anything about it.

By the time I was 13 I was having periods every 2 weeks at which point my mum took me to the doctors. All they said was I was still young and it would take time to regulate and that some women have more painful periods than others. But he still put me on the pill.

I remained on the pill until I was 22. My periods were still very painful and heavy throughout my time on the pill. I came off the pill as me and my fiance were trying for children. My periods from that point got worse and worse to the point where I was only going a week without bleeding and there wasn’t a moment when I didn’t feel pain.

Just 9 months after coming off the pill I collapsed after passing a vast amount of blood while in the shower. I couldn’t stand and I was having cold sweats. I explained what had happened over the phone with a nurse and she suspected I had had a miscarriage very early on in pregnancy.

After this my periods got even more painful. I eventually got sent for an ultra sound where they found a chocolate cyst but it was not yet at a size that would make them worry but that it was definitely the cause of my pain.

I then researched myself and found endo. At my next ultrasound I asked about it and she told me that she suspected I had endometriosis. By this point the cyst had grown to 4cm x 3cm, still not big enough.

I then went off sick from work and was in and out of the hospital. I spent 5 days in the hospital just after my 23rd birthday with abdominal, side and back pain. For which I was sent for an MRI as in one of my ultrasounds it showed my right kidney was full of fluid. This turned out to be because the cyst was crushing my urinary tract.

On January 13th, 2012 I had key hole surgery to put a kidney stent in place and on this date I was officially diagnosed with endometriosis.

On March 26th, 2012 I had the cyst and appendix removed, excision of endometriosis, they unstuck my organs and replaced my stent. This was when I was told I was in stage 4 endometriosis. They couldn’t get it all either as it had spread to my right leg.

In May, I had the stent taken out to see if my urinary tract could pick up function…. it didn’t, just a month later I was having the stent put back in place as my kidney was functioning at just 13%.

On October 26th, 2012 they went back in to see what was stopping my kidney from functioning, where they found my right side covered in fibroid tumors. At this point my gynecologist decided to transfer me to a new specialist. One with more experience. From this op I was put on an injection to fake menopause.

I had my 1st injection on November 13th, 2012. 2 days later my fiance decided to leave me. He told me that I had let this disease take over my life and it was just too difficult to see me in pain all the time, and that he was tired of being pushed away. We were together 8 1/2 years. Not only that, but friends pulled away too as we shared the same circle of friends. I was scared of fighting this alone.

I had my next operation on January 10th, 2013. They removed my right ovary, fallopian tube and fibroid tumors. Unfortunately they punctured my urinary tract so they couldn’t complete what they had planned, so I am still awaiting further operations to sort that out.

With all that said, I feel ok.

By Gemma Binns