Guest Article: Katherine Stanley, Director Endo Help Foundation and Talking Endo Support Group.
Katherine Stanley, Director Endo Help Foundation
In some ways you can describe my life in statistics. I was one of the 92% of adolescent girls that had period pain and I was part of the third that missed work and school because of it. I was part of the majority that didn’t say much about it either because my GP dismissed me when I did, and my Mum told me that period pain was normal. I am one of the one in 9 women who has Endometriosis. I exceeded the national average diagnosis delay of 6.4 years and had my pain and suffering dismissed for 17 years before I finally received a diagnosis.
I know that because I am female I am more likely to suffer from a myriad of pain conditions because of my gender, and I suffer from a few of them. I also know that my pain isn’t believed in the same way by doctors as it would be if I was male. I have experienced first-hand the stress and psychological impact of being dismissed and ignored when you are scared and in pain.
Endometriosis is a common gynaecological condition affecting females, characterised by tissue similar to the lining of the uterus growing in other parts of the body. It is as common as asthma or diabetes. Despite how common it is, we still don’t understand many aspects of the disease and there is currently no cure. It is estimated to cost the individual $30, 000 a year in medical expenses and lost income and the Australian economy around 7.5 billion dollars annually.
Symptoms of the disease do vary but typically include progressive pain during menstruation and non-menstrual phases. Pain can be in the abdomen, bladder, lower back and down the legs. Other symptoms include fatigue, tiredness, bloating, bladder and bowel symptoms. Chronic pain is a common element of the disease that can persist even after disease has been surgically removed.
These statistics and symptoms whilst jarring don’t describe what it is like to have crippling pain rip through your life, and years of not knowing why. For 17 years I thought something was fundamentally wrong with me psychologically. I couldn’t seem to function like other people. I would always use all my sick leave, I was never able to work full time and I was constantly in pain and sick. My periods would leave me in bed for days crippled with pain, and nausea. I found it hard sometimes to make it out of my room and down to the hallway to go to the toilet.
I went to so many doctors and no-one had an answer… until eventually I stopped. I re-structured my life so I could take time off every month to deal with the pain. I stopped talking about what was going on for me in case someone discovered what felt like this horrible truth lurking beneath the surface. The truth that I was a crazy hypochondriac that had managed to somehow create imaginary pain that meant I couldn’t function like everyone else. I hated my body for constantly letting me down, but I hated myself more, because as the doctors kept implying and telling me I was crazy.
I finally received my diagnosis when I was struggling with infertility and my gynaecologist asked me ‘if I happened to have painful periods?’ I remember my reply was yes but nothing out of the ordinary - I just can’t work for most of the week I have my period. I still remember the relief when I had a name for the condition I had struggled with for so long. I wasn’t crazy, I had an incurable disease. I know now that this is a very common story.
I am on a mission to change the rhetoric around Endometriosis and period pain. I want all women to be seen, believed and heard. I want to break the stigma around menstruation and for all young women to know that period pain is common but not necessarily normal. Period pain that interferes with your daily life should be investigated. I want women to understand the neuroscience of their pain. I want education programs like the Period Pain and Endometriosis Program talk in every school across Australia. I want pain to be a central theme in all national policies and action plans on the health of women. I want governments to invest in multidisciplinary clinics and research so we know more and can give women the best treatment for these under-researched and thus not well understood conditions. I want governments to recognise that investing in women’s pain is an investment in our community and economy because when women are able to live their best lives, we all benefit.
But most of all, I want no-one to ever feel as scared and lonely as I did.
*In this article I use the term women as they have been the participants in most of the research to date on pelvic pain and women’s health. I acknowledge that gender diverse people are underrepresented across all research and discussion in women’s health.