Over the pain barrier

My symptoms started when I was 21 and for the next six years I
lived with constant frustration as I was put on course after course
of antibiotics to treat non-existent infections, sent numerous
times to casualty with suspected appendicitis and even questioned
over whether the pain was imaginary. Eventually, when I was 28, I
was diagnosed with endometriosis.

I found out more through the National Endometriosis Society. It
is a condition where the cells that are normally found lining the
uterus are also found in other areas of the body, but usually
within the pelvis. It is debilitating and has had a huge impact on
my life. I fluctuated between good and bad days – simple jobs like
food shopping became impossible.

Doctors prescribed me hormone treatment and I underwent keyhole
and conventional surgery and tried homoeopathy. These did help but
it was my involvement with the expert patient programme (EPP) that
made the biggest impact on my life.

I heard about EPP three years ago through the Endometriosis
Society. EPP is about self-management of long-term illnesses, such
as diabetes, multiple sclerosis, depression and endometriosis.

The course does not advocate treatment routes and is not in
place of treatment: it works with your medicine. The course
consists of a two-and-a-half hour session each week over six weeks.
Everyone there has a long-term illness, including the tutors. I
found a friendly, trusting atmosphere where I could discuss the
issues bothering me about my illness and work out ways to feel more
in control. I felt I wasn’t alone as other people knew exactly what
I was talking about.

I have made changes to my lifestyle to minimise the discomfort
and pain, for example avoiding poor diet and stress. It can be
difficult to communicate rationally when you are in pain, but using
several of the diagrams from the EPP I have been able to explain
how I feel more effectively as well as being more able to listen to
how others feel about the condition. I have also used action
planning to break down larger tasks and make them achievable.

I felt so strongly about the benefits of the course that I
started running the courses, along with a co-tutor, and now have
the enjoyment of seeing more people benefit from this
programme.

One section of the course – making informed treatment decisions
– has helped me evaluate the treatment options available to me and
ensure I get the right treatment for me.

The programme promotes and supports lifestyle changes which are
as important as the medicine prescribed. Through EPP I have
discovered life-long friends, met amazing people and been given
opportunities I never imagined. With self-management I don’t feel
endometriosis is controlling my life, I feel that I am controlling
it.

Samantha Falconer, 38, has endometriosis.