I'm 30yrs old and a mother of a 4year old boy. I have endometriosis, pcos and adenomyosis and live daily with my chronic pain condition.
I would say I have had endo and pcos since puberty. I had severe period pains during high school, it would flood out onto my school dress every month and I would sneak to the toilets to wash my dress. I would have many over the counter pain killers daily and I thought this was all normal. I could bleed for up to 6 months at a time then have 2 weeks break and start again for a few months. I was placed on the pill to help my periods at 17. I would continue to have cyclical painful periods. Pap smears were very scary and painful however I never knew why and just assumed it was normal.
Some 5 years ago I had a career working in Child Protection. This coupled with family and social commitments I had very little time to “just be”. I am a wife, a mother, mother-in-law, grandmother, a great grandmother, daughter (my 90 year old mother is currently in a nursing home), sister, friend and the list goes on. I was involved in many community activities and had lots of hobbies which kept me fairly active.
Hi my name is holly I'm 28 now and ever since I can remember pain has been something as integral to who I am as my name or date of birth. I remember thinking I was different as a little girl because all the other little girls had beautiful long hair and even at the age of 6 I still had but a tuft of baby style fluff. I remember wondering if it hurt to eat and go to the toilet for everyone else, but I never complained and I thought blood in the toilet was "normal". After many years it turned out I had coeliac disease and I was missing a valve in my oesophagus causing acid to nearly destroy my food channel, which needed major surgery to repair.
Everyone experiences pain. From the minor headaches, broken bones, moving up the scale to post operative, child birth and severe burns. But imagine pain that never goes away.
Chronic. Constant. Never ending.
After breaking my neck nearly three years ago I now have neuropathy, nerve damage that radiates pain from my neck into my arms and hands.
Imagine the lightest touch of a feather on the skin feeling like flames of fire penetrating through skin and flesh, excruciating pain radiating into the bones and limbs. The whole body wanting to shut down.
My story starts 25 years ago, with a trip to the hospital and a stay. My diagnosis was Acute Pancreatitis, a disease with one of its main symptoms and result of an acute attack is really severe pain. I would experience these attacks about once every 2 years until about 8 years ago. 8 years ago I started to get the horrible pain in my abdomen again, and although not as severe as during an acute pancreatitis attack, it was starting to effect my every day life. During this early time, I had an acute attack of pancreatitis, and this time the pain did not dissipate as it had done previously, but stayed with me on a daily basis. This set me down the path of ‘Pain Management’, and being exposed to various methodologies to control my pain
I have lived with chronic pain for nearly 10 years. I have gone through tough times - needing high medications and attending pain clinics. I suffer with chronic back pain and neuropathic pain also depression and anxiety. I have lost lots but gained knowledge as well. I try and keep going every day.
Where to start, where to end, What to reveal and what to hide?
My name is Helen and my pain story is one that is tangled up with the disease Ulcerative Colitis, some autonomic nervous system dysfunction and some very intense life events.
I was 21 when I was first diagnosed with Ulcerative Colitis, it was painful, bloody and messy to say the least. I am now 43 and trying to find my way back to a life that does not leave me in hospital every few months. 3 years ago I had a massive bowel obstruction and a terrifying hospital visit, more so than all the others had ever been.
I came out of that hospital with vivid flashbacks of all the pain and trauma of the past 20 years playing in high definition and with more re-runs than a Foxtel TV guide.
I saw a story about bullying - about how teenagers are so depressed and I thought how awful it was and how hard it is to change society’s mind. Where do you start when in life even as adults we are bullied by society and how I was so sick of being bullied by a system.
Having the strength to stand up to the bullies?
I think as a person I have always tried to stand up to bullies but no-one really understands how hard it can be to do that at times. I am lucky I have a supportive family and that my personality in general is strong, yet often feeling broken. There are friends who do not have a clue that this is the life I have been living for almost 15 years as I like to keep it separate. I want people to know the real me, not this person.
In days gone by women like me would most likely have been locked away in a psychiatric facility being told " Your pain is in your head!". We can't find anything wrong with you.
Fortunately a few health care professionals took the time to listen and support me in my quest to find answers to my chronic retractable pelvic pain sustained after pelvic surgery in 2004.
This pain is not just any pain as we know it. I couldn't believe such horrendous pain could exist. Because of the location and nature of my pain I found it very humiliating and terribly stressful to explain as I was passed from doctor to doctor.
Searing, burning, stabbing like torture to the genitalia and rectum, painful numbness across my buttocks and thighs like I had suffered a severe whipping, and a feeling of my whole pelvic floor falling to the ground left me incredibly distraught.
My story of chronic pain began when I was 20 years old. A new full time job was very demanding on my body and I was studying at University. As the year progressed, I realised the pain made it hard for me to walk. I wanted the strongest painkillers to numb the pain, yet the pain did not subside. Physiotherapy, hot and cold packs didn’t work either. I knew there was something wrong. It was then I was diagnosed with Rheumatoid Arthritis (RA).
After being diagnosed with RA my work and university studies became too much for me. The pain and stiffness that comes with arthritis was overwhelming. I was coming home from work and university in a lot of pain and then missed university and/or work. If I did go to Uni or work I was in a lot of pain and frequently had to go home. As the years went on my work decreased from full time (5 days a week) to only a short day a week due to the pain I experienced. I could no longer sit or stand comfortably. It didn’t matter how much I spent on shoes or podiatry.
you're not alone