My pain began when I was a teenager.
I got my period around 13 I think and I remember thinking - wow. I will be in this amount of pain every month of my life for the foreseeable future.
Being a naive teen, I thought it was normal. I thought other girls just put up with it. Some days I couldn’t stand upright because of the pain - not only in my pelvis but my back, down my legs, in my bottom.
The first time I thought ‘maybe this isn’t normal’ was when I experienced what is known as ‘flooding’ - which is exactly as it is described. Fast forward to me being 21 in 2004 and having an investigative laparoscopy - confirmed endometriosis. Bowel adhered to back of uterus. It was excised with an assurance that the pain would be gone and sent on my way.
During this time I was a student at university doing a Bachelor of Science and it also coincided with the diagnosis of my mental health conditions. I suffered a severe depressive episode when I was 21 which ultimately was exacerbated by my suffering. I couldn’t make plans, I couldn’t cope with the workload and had to defer university.
Two years later I experienced a new one-sided pain that saw me having emergency surgery to remove a 10cm cyst. Two years later - another, more intense operation with extensive endo found - while I was busy as an international flight attendant.
After flight attending became too much on my body I resigned and tried other jobs that also were not conducive to my health. In 2010, after having resigned from my dream job as a state cosmetics manager I was disappointed and disillusioned and working at a bar. I distinctly remember driving to Burleigh for some sun and relaxation with my parents and experiencing horrible pain in my hands and feet. I knew something was wrong and had some blood tests done. It took almost 2 years from there to get a diagnosis in 2012 of rheumatoid arthritis.
I started aggressive medication to slow the degenerative effects of the disease and meandered my way through working full time and trying to pay a mortgage and have a good quality of life. I was living on my own and struggling to care for myself and cook and clean and keep my head above water.
Enter my saving grace - my beautiful partner Jeremy. He was the brightest light in a very dark tunnel and I held on with both hands. 2013 saw me turning 30 AND finally completing the degree I had started over ten years prior. I flew back to Qld to be with my love, and he watched as I sobbed on the bed or the floor or in the bathroom with crippling pain and bleeding. We decided to start trying for a baby as we knew the odds were against us.
After a year with no baby, we had a laparoscopy to clean out any existing endo. I then had fertility treatment and ended up pregnant with my daughter who is 5 today. During the first trimester I was injecting drugs into my abdomen and using progesterone pessaries to assist the pregnancy and fell into a severe depression. In hindsight and after more experienced with progesterone I have come to realise it triggers mental struggles in me and I avoid it at all costs.
Being pregnant I couldn’t take much to ease my pain and I was unlucky in that I didn’t go into remission with my RA. The only saving grace apart from the beautiful daughter I now have, was that I didn’t have a period for 1.5 years.
4 months post-partum saw the return of my period - and also one of the worst flares of arthritis I’ve ever had. Attempts were made to manage my gynaecological pain and I had two mirenas inserted during a laparoscopy. An MRI discovered that I also had adenomyosis in both of my uterus’s (I had a heart shaped double uterus). Four months later I was back in and in agony - another cyst this time and mirenas slipping.
After not getting relief from the cocktail of drugs I was on post-partum I had to take prednisone which causes migraines and suicidal tendencies on withdrawal. Other drugs were tried once I had ceased breastfeeding but ultimately, I was still in active disease and in agony. We decided to try for another baby because my fertility was decreasing, and I knew I needed a hysterectomy. After a year of trying and high disease activity I suffered a miscarriage in 2017. We decided to commence fertility treatment the next month, which was unsuccessful.
We decided to stop trying because I was mentally not coping, and physically in so much pain.
Then our miracle baby boy Remy was conceived - just when I had given up. He was born a year to the exact date that I miscarried - 30 July 2018. I was in remission and had no periods, but I also had an irritable uterus - causing premature contractions which resulted in lots of bed rest and trips to the hospital.
Remy was born and just as I anticipated - the post-partum flare. Seven weeks post-partum and I was in agony again. I begged my rheumatologist to help me and we managed to qualify for biologics - cimzia was safe for breastfeeding.
The pain I felt in my womb every time I breastfed Remy was worsening and I felt a cyst rupture a few months post-partum. I knew I couldn’t wait any longer and booked in for a hysterectomy. I had to stop my injections of cimzia and try to wean off pain medication that I was on for the very thing causing the operation plus my arthritis and I was so grateful and relieved when my womb was gone.
I had hoped beginning the cimzia in November 2018 along with the hysterectomy would have lessened/stopped my need for painkillers but I am still taking them today. I feel like I’m seen as a drug seeker and I was on a course of endone for six straight months while I tried to parent my newborn and older child. I was put on the narcotics register for this and feel equal parts judged and ashamed because of this. My wonderful GP who just had to look at me to see how I was, left the clinic and I have had to see other doctors in the clinic for my pain management which has led me feeling misunderstood and overlooked.
Unfortunately, just over one-year post hysterectomy I am experiencing familiar endo-like pain in my pelvis particularly my bladder and bowel which have in the past both adhered to each other. I have no doubt I will undergo another laparoscopy to determine what can be done and I am still in active disease of my rheumatoid arthritis ten years later. There isn’t a period of time I can remember not being in pain. I’ve attempted to incorporate hydrotherapy and Physio and guided Pilates, but my disease activity is such that it renders me almost incapacitated while I recover, which I can’t manage with having two children at home. So my needs get pushed to the side while I focus on survival. I have gotten several mental health plans to see psychologists but just haven’t managed to follow up on it because there is always something more pressing to address.
For someone who is a perfectionist and struggles with OCD, I have had to triage my life and my home to get through the day. Housework often goes undone and basic housekeeping doesn’t happen. This exacerbates my anxiety to no end yet there’s no resolution in place.
I’m grateful that school is back so I have less of a workload at home, and the guilt I feel from my relief is paralysing.
I received the very welcome news yesterday that I have qualified for NDIS funding. I’m hoping for some help with the housework and some modified equipment to make mobility more accessible and easier. I’m hoping to get some occupational therapy to learn to move my body differently to extend my abilities in day to day life. I’m hoping to get some psychological support via Telehealth so I don’t have to drive or make appointments.
There is more light ahead and I have no doubt things will get better but I cannot imagine a day without pain.