Endometriosis has really had an impact on various things in my life.
I’ve had two surgeries and after the first, I was off work for six weeks as the job I had was physically demanding. Anyone who knows me will know that I absolutely hate being off work, as I really like my job.
The prospect of going back to work was pretty daunting as it was more about the 'what ifs' than anything. I had a good manager who kept in touch with me while I was off and told me to put my health first, and that they would get cover until I returned.
On my first day back at work, everyone was so welcoming. My manager made sure the return to work meeting was done that day, so that I could be welcomed back properly and so that she could look at any other supports she could put in place to help me in the workplace. I was always grateful to her, as she had told me that I could go to her or one of the deputy charge nurses if I had any issues or if I needed time off for hospital appointments.
I decided to move jobs as I wanted to gain wider experience, having worked in the same area for over a year. I settled in to my new role quickly, but then found out about a month after starting that I needed further surgery; this would be bigger than my first. I was worried about it, as I’d heard of other women who had lost their job because of sickness absence.
I spoke to my manager and explained to her what endometriosis is. She’d never heard of it and felt better that I had told her about my illness. I had surgery about 4 months after I started my new job. Unfortunately, I ended up having a setback in my recovery when I became unwell with infection. It took me a further few weeks to get back on my feet, so my doctor decided to sign me off work and give recommendations on adaptations to my work schedule.
I returned to work after just under two months of being off; this was a phased return and my boss gradually built up my hours every week until I was able to manage a full shift. My manager decided to make a referral to Occupational Health which I had agreed to, as she felt that she needed to get advice.
The appointment with Occupational Health came and it was a phone consultation. I had to explain to them what endometriosis is, and they assumed it was “period pain”. I was annoyed at this - you’d think being a service for staff support they’d be aware of reproductive health and illness. They couldn’t offer appropriate advice and I was told to “use annual leave” and discuss longer term options with my manager.
Unfortunately, my health deteriorated, and the endometriosis was affecting my day to day life even more, which meant there were days when I just couldn’t manage to get into work as the pain was so bad. I began to struggle with my work rota and asked for an adaption. I was told that “it was too short notice” and that was when I got in touch with my Union for advice. I was then invited along to a meeting about my attendance; my manager and the nurse manager was there along with my union rep. I had everything in order in a folder which showed scan results, discharge letters etc. The clinical nurse manager was so lovely. She didn’t even look at the sickness percentage, as I had an illness which I couldn’t control, and she was right. I felt she had understood and I explained how the side effects from the treatments the hospital had given me were troublesome. I told them I was getting monthly injections to put my body into a false menopause and just how hard that was. I told them I was still getting my head around the idea of being on these injections, as I was only 20.
This illness was just devastating. I knew I had to make a decision for the longer-term, which was emotional, but I knew my health had to take priority. I announced that I’d work to the end of the month and I would then hand in my resignation. It was a tough decision to make but one I was so sure about. My employer acknowledged the fact that I had made it into work when I didn’t feel well and that I was always welcomed back into my post in future.
I now work on a staff bank which means that I can pick and choose when I work. It does seem to be a better solution; the only downside is that I don’t get sick pay.
As I write this, so many different things come to mind that need to change. There are so many women out there who are being unfairly treated. The Equality Act 2010 needs to be strengthened as its meant to provide a safety net for those who have a disability but it’s doing the opposite thing. Endometriosis IS a disability it is listed in the top 20 painful medical conditions on the NHS Choices website. Hopefully this is something that can be looked into and adaptions can be made to the policy. That aside, the Endo community is filled with women who I know will have an impact and help to implement the changes we so desperately need.
Since being diagnosed with this illness I’ve been campaigning for more awareness and created a video with Fixers UK talking about my experience of living with the condition to help others. I am going to Scottish Parliament in September to meet with the Women’s Health Cross Party Group to talk about Endometriosis, where I will be joined by a fellow campaigner. I will not stop fighting for the changes and support that we deserve.
Dionne spent a gruelling six years suffering from pain. After years of not knowing, being turned away on many occasions and told her symptoms were "all in her head", she was finally diagnosed with Endometriosis in 2016. The illness has caused her life to change dramatically and she is now campaigning to make other women and young girls aware of the illness.
Support Dionne McFarlane and follow her campaign on Twitter @dionnemcfx