I feel like I have severe period pain 24/7 due to interstitial cystitis, a bladder disease.
Because the pain is similar to endometriosis, it took a year to get an accurate diagnosis.
At the time, life was pretty tough. I was working full-time and my employer was not very supportive. Living in a regional area, it was difficult to access support and information, although I was helped by a visiting Continence Advisory Nurse and my GP.
After doing my own research, I found out about multidisciplinary pain management. It helped me realise I had to take control of my health and wellbeing.
I found a part-time job with a wonderful team leader and organisation, and I was able to rely on the support of my family.
With the help of my GP, I created my own multidisciplinary pain management plan. It involves Botox injections every 6-8 months; drug therapy; physiotherapy, remedial massage, and myofascial muscle release. I also see a chiropractor and psychologist, in addition to specialists.
Without private health insurance, managing my pain would be expensive and unaffordable. The Botox treatment alone costs $800, and I have to fly to Adelaide for the procedure. I’m also taking a new drug called iAlural, which is catheterised into my bladder, and at more than $1,000 it is not covered by insurance.
When I felt I was in a good place with my pain management, I decided to help others. Chronic pain can be a very isolating experience, and only other people with similar conditions can really understand.
I now run a support group in Port Lincoln called Diamond Facets Chronic Pain Support Group with the support of the Primary Health Network SA. As Facilitator I provide support and share knowledge with others. We have also have guest speakers.
There are many facets to living with chronic pain, and everyone experiences it differently, but what I really want to share is that no matter what, we really need to take charge of our own pain management.