Passionate about all things Endometriosis, having suffered from this debilitating disease for over 30 years, I am an advocate for change, raising awareness and proactive funding. My future collection in 2022 will be centred around the theme of Endometriosis and Chronic Pain, visualising sufferers stories, emotions and surgical internal struggles. The aim is to create an exhibition to raise funding for the support of pain management for Endo sufferers. I will be working in conjunction with painuk.org and Endometriosis-UK.org and hopefully other celeb endorsements, who are endometriosis sufferers themselves, aiming to auction off at least one of these paintings.
Diagnosis and the length of time taken to diagnose is key and rightly so has been the focus for endometriosis funding for many years,. However, it is important that we now consider ways to implement strategies that assist us in living with the condition, which has no cure and debilitates so many lives. Our pain needs to be managed correctly, taken seriously in the interim and individual stories evaluated so we can learn to live with this disease successfully, more positively.
I will be posting more about my own journey/story over the next few weeks and hope that you can join me in this quest for our pain to be recognised and managed. Once diagnosed with Endometriosis, and treated, usually with the excision surgery laparoscopically, many women are packed off to begin their lives with a debilitating disease and no support in how to do this. Initially these surgeries assist with the pain and a diagnosis can be helpful in that we now know 'it is not all in our heads'. But, with most, we find that the pain creeps in, the adhesions begin to weave their wicked webs around our bodies and more surgeries are required. Unfortunately, it is usually at this stage that we realise that despite having a 'diagnosis' we can often be 'back to square one'. Our first surgery and diagnosis has ticked a box with the medical professionals, removed the moaning woman in pain from their practices, perhaps assisted them in their fertility issues, which is fabulous for all who require that, but what about the Friendo's who have continued pain and said pain is left unmanaged. Years of fighting for a diagnosis, then a treatment, but what now? It grows back, it never goes away and causes all kinds of knock-on effects, such as bowel issues, early menopause, adhesion pain, pain killer addiction, Fibromyalgia, auto-immune diseases, the list is endless. We need a system in place, that once diagnosed, our amazing NHS has a plan for ongoing treatment, in particular 'pain management'. So that we have access to pain relief, if we need it within an A& E department, without feeling like a heroin addict, waiting for their next fix. Seen by a trained medical professional, be that nurse or doctor, who is knowledgable in Endometriosis. So that we have access to regular screening, to see if we need further surgery, promptly. MRI scan's for the diagnosed to assess, ultrasounds to diagnose for chocolate cysts for example. A system in place where you are not discharged from the gynaecologist you have already waited possibly as much as 7 years to find and be diagnosed by. We must be kept within the system, in much the same way a Diabetes diagnosis is treated. The disease is now recognised as a disability, but not respected as one within many medical fields and with many medical professionals. This must change. We are slowly breaking through the barriers, but we need funding and further awareness and we need to have access to considered management of our conditions. For some, myself included, even when menopause strikes, I will not be over this illness, as it has affected other organs and created a cacophony of other medical problems. To ensure we can move forward positively with our lives, we must be proactive with the management of our illness. Let me know your thoughts and if you agree.
Recognised but not respected....
...as a disability
...for it's severity
...as a chronic illness
...in pain management
...in the medical profession
How can you help?
If you would like to be part of this exciting movement, please drop me an email to discuss your contribution /story. I look forward to hearing from you all soon. Remember, 'You are not alone.'
Lots of love
Leigh
x
info@leighsugdenart.com
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