As my family and friends know, I have suffered from giggling incontinence (I prefer to call it laughing incontinence) for 40 years. I am now 46 years old. At primary school I avoided sport, drama, dancing, recess and lunchtime games/sport. I was teased, name called and picked on, especially by two boys who used to follow me around and call me 'piss-her-pants-girl'. I hated school concerts and fete activities as I had to get involved. Also, I played netball and thank goodness it was on outdoor courts. I loved it when it rained as people couldn't tell I'd had an accident!
Secondary school was similar to primary school with avoiding subjects that made me laugh. Kids weren't as cruel, but still teased. I used to forge notes signed by mum to get out of sport and drama, but couldn't always avoid these situations. As with primary school any activities outside I could handle, but inside was hard. I'd often sit longer on my seat until everyone had left the classroom, then I'd walk out. I had to leave my mess behind or else it would've been noticed. Mum took me to a doctor who said there was nothing wrong, that it was in my mind and put me on oral treatments for urinary tract infections. I contemplated suicide several times and once stood on a train station but was too scared to jump. My belief was I was dirty and no one would miss me.
To be honest, I hated my school years and believe I've blocked a lot of it out. I can't remember many events/experiences that friends talk about, related to our school days. As soon as I finished Year 12 (HSC) I got a job and with my first pay packet went into the Royal Women's Hospital for help. They did an urodynamics test which came back with normal bladder function, left me on the oral treatments for urinary tract infections, and I commenced physiotherapy sessions. I stopped going when my condition didn't change, because it was hard getting time off work and I had to travel into the city for this.
Over the years from 1986 - 1995, I had an IVP, numerous urodynamics tests, medications (imipramine and Ditropan®) with little or no change. Then I was pregnant with our first child and stopped all medication. Since having children I went and had the same tests I'd had previously and also saw a health nurse who put me on a Sportsmed machine which I had to stop because it gave me constant vaginal ulcers. I've also been on different medications (Oxytrol and Enablex). The consensus over the years has always been that my bladder function is normal, pelvic floors are strong, so why is this happening to me? I still don't have that answer!
Having a boyfriend was always worrying to me. I didn't have many due to my vulnerabilities in suffering this condition. When they found out two ran the other way as quick as anything and the other two were very supportive, one being my husband.
My biggest fear over the many years was not being able to have children. I'd always wanted to be a mum! I was always reassured by medical specialists that I'd be fine, but I never believed it. I'm happy to say I've gone on to have three gorgeous healthy children. My second biggest fear was that they'd inherit my condition and luckily they haven't. We didn't tell our kids about my condition until they noticed.
For most of my lifetime I have questioned: "Why me?" This insidious condition has controlled my quality of life. I now realise, "Why Me?" - because I can make a difference! Therefore, I've started this Urinary Incontinence Support Group on Facebook. It's established to help empower sufferers with the knowledge that they can make it through the humiliation and embarrassment (especially children) and that they are not alone. YOU are not alone anymore!
This group is for sufferers to share their stories. You deserve to be heard! It will be a positive and inspirational support group. Ideally, in the near future, I would also love to start a face-to-face support group, because I know that over many years this is what I've yearned for and believe this is what sufferers need, so they don't feel so isolated.
Initially though, I've started this Facebook page and I believe this is the correct avenue to get to as many people as I can to get the support they need. After doing some research on other support groups on Facebook, I decided to go worldwide create a public group, to give everyone the opportunity to join the group and connect! Also, by making the group global, members can keep up to date with what resources/medications other countries are using, that may not be on offer in your own country. There is currently one other UISG on Facebook which is in Ireland and has 11 members. It hasn't been utilised in over a year, so to establish a new group was highly appealing.
I know this is a sensitive subject and the hardest issue I've come up against so far is members sharing their stories (you can post anonymously via a private message) and starting to talk about urinary incontinence. Depression was also a sensitive subject and look at how many people talk about that now! This gives me hope.
UISG was only launched six weeks ago, so is very new. In this time, I'm pleased to say I encouraged the Royal Children's Hospital to write a blog on bed wetting as when I searched for a blog on incontinence with children/bed wetting it came up with nothing. Positive small steps!
My hopes and dreams for the future are for incontinence as a whole to not be a taboo subject. I'm starting with this group as it's what I can relate to, but hopefully in the future other people will start other Incontinence support groups. Ideally, I would love to reach children and let them know they'll make it through, but I need to get to them through their parents.
It's comforting to know that through adversity, I now have the strength and courage to help others and make that difference.
I would like to finish by sincerely thanking my gorgeous husband and incredibly mature and inspirational children for all their love and support in encouraging me in taking on this challenge!
Hopefully through reading this article, more people will feel the need to connect with my support group.