‘Birth Trauma’ Original Artwork by Arabella Walker (emerging indigenous artist, Yuggera Country)
One of my patients has given permission for me to post her submission to the NSW Birth Trauma Inquiry which happened last year. It takes a certain amount of courage to reveal the extent of the birth injury that one has and the submission my patient made is going to make a huge difference for women both in Australia and around the world. I often overshare with my patients about my own different pelvic health issues and to be honest I think they love the fact that their pelvic health physio has as much, if not more, dysfunction than they have. But I don’t go into the graphic detail in my blog about my problems, but my courageous patient has given permission for me to post her testimony in full. What we need of course is less shame and silence around pelvic floor dysfunction and more open and frank dialogue about what women go through sometimes with their birth experience.
As you can see from the absolutely brilliant Mind Map that my patient has created, birth trauma can impact every minute, of every day for some women, because it is life-changing and intrusive. And yet women are encouraged to move on and get over it as soon as possible – because that’s what women apparently have done for millennia. But thanks to the amazing work of Amy Dawes OAM in setting up the Australasian Birth Trauma Association, women have much more support, access to informative resources and now public enquiries are happening both here in Australia and elsewhere overseas to actually address why some birth trauma events are happening. Take your time to read her journey.
Lyn Leger
Introduction
My name is Lyn Leger, and I am here as an individual.
I have a birth injury – bilateral avulsion of the levator ani muscle, as well as three compartment prolapse.
I want to focus on 2 key points today:
1. The extent of impacts of my injury; and
2. The prevalence of avulsion.
I also want to provide my recommendations.
Impacts of my birth trauma
So firstly, the impacts. I would like to table this mind map, it was part of my submission.
Mind Map: Impact of Levator Avulsion and Prolapse. Original work by Lyn Leger – permission given to publish. It may be a little difficult to read without a magnifying glass.
It shows how my birth injury, which cannot be seen and the impacts on EVERY aspect of my life. Everything from the physical aspects of the injury, managing a pessary, fitting in the required ongoing rehabilitation, to my work, home and social life, mental and physical health and well-being, my relationship with my husband, children and extended family, and my ability to look after my own children.
At one stage, the impacts became so completely overwhelming that I got to the point of contemplating suicide. Yet I was told by more than one practioner during the time of diagnosis to ‘stop catastrophising”.
As I age and go through menopause, there is only one certainty, and that is that my condition will worsen, in fact it already has since I was diagnosed five years ago. This causes me great anxiety about my future. With longevity in the family, I have potentially many decades to ‘survive’ and manage this injury. Currently I use a pessary and work hard every day to build and maintain my strength and conditioning, to ensure I can be functional and independent for as long as possible. But who knows how long this will last.
Prevalence of levator avulsion and prolapse
2.Moving on to prevalence: Since I was diagnosed, I have read many articles from peer-reviewed journals in an effort to understand my injury. I have been horrified by the statistics around avulsion:
Approx 1 in 5 women sustain avulsion during their first delivery. Some articles suggest this could be up to one in three (1 in 3)
Between 10 and 15% of women sustain avulsion after spontaneous vaginal deliveries
Avulsion has been found in up to 66% of women after forceps deliveries
36% of women with prolapse have underlying avulsion
Realising how common this injury is, I thought surely there is a surgical fix for me and searched for more information. However, I discovered there is no surgical solution for avulsion. At best surgery for avulsion is considered experimental. Additionally, while prolapse surgeries are relatively common, they have a high-reoperation rate, between 19 and 29%, and my urogynecologist explained to me that for women with avulsion, the failure rate of prolapse surgery is much higher, around 70-80%.
To say these statistics are shocking to me is a gross understatement. Listening to the news on the radio one day, hearing about endeavours to send spacecraft to Mars, and establishing communities on the Moon, I got incredibly angry. How is this fair? Somehow millions, probably billions of dollars are poured into
R&D for these activities in space, but we can’t fix a woman’s vagina after she gives life to another.
So now my recommendations:
1. Immediately undertake a study into the economic burden of levator ani avulsion. Considering the prevalence of avulsion, and the various types of impacts as I have shown in my mind map, the economic burden of avulsion
must be HUGE!!
On another women-focused issue, endometriosis, the total economic burden has been estimated to be between 7.4 and 9.7 billion dollars. Endometriosis affects 1 in 9 Australian women, and has a similar range of impacts.
Approximately 1 in 5 and possibly up to 1 in 3 women have avulsion, which is almost double or 3 times that of endometriosis.
2. Ease the ongoing financial burden on individuals, one of the key impacts of avulsion, by working with the Australian Government to put in place Medicare-funded care plans focused on birth injury and trauma. These would likely be similar in nature to Eating Disorder treatment and management plans which provide for comprehensive treatment from both psychological services and allied health professionals.
3. Urgently invest in research and development for women with avulsion on three key areas:
4a. This one is the most important to me – Research to develop permanent surgical fixes for avulsion. Additionally, where experimental surgeries are occurring outside Australia and showing reasonable results, provide funding for our Australian surgeons to learn these techniques, improve on them, and make them available to women in Australia.
b. Research to improve outcomes and longevity of prolapse surgery for those of us with avulsion. A 70-80% failure rate is not acceptable.
c. Research to develop new and better pessaries that work for all women with avulsion, potentially using imaging and 3D printing, or other innovative techniques. We need this while we wait for improvements in prolapse surgery and development of permanent fixes.
As one of hundreds of thousands, possibly into the millions, of women in Australia with this injury, I need your help to put all these recommendations on the public record and ensure they are implemented.
Thank you for listening.
Lyn Leger
Thank you Lyn for an outstanding contribution to the inquiry and for advocating for all women so much.
For those who haven’t read my blogs before and are wondering what levator avulsion is – this is a drawing (out of my books Pelvic Floor Recovery: Physiotherapy for Gynaecological and Colorectal Repair Surgery and Pelvic Floor Essentials) of the muscle detached from the pubic bone. This was first mentioned in 1907 by Halban and Tandler and again in 1943 by Howard Gainey, a general obstetrician from Kansas City, but was seemingly ignored by the medical fraternity until 2005. (Prof Hans Peter Dietz website). There were two cohorts of 1000 women described by Gainey in his research – not insignificant numbers. Professor John DeLancey has also been researching this as has Dr Peter Dietz since the early 2000s and yet there is still a certain level of ignorance about this in health professional circles.
I can only hope that the outcomes of the NSW Inquiry and the major one in the UK coming up in March (where our own Amy Dawes OAM will contribute) will give recommendations to try and decrease the prevalence of levator avulsion. There is a lot more known now about the factors that may increase your risk of sustaining this injury and pelvic health physiotherapists do assessments and can outline what those factors are so you as the prospective new mum can make an informed decision about your mode of delivery. As Amy Dawes has said. She knew why she didn’t want a caesarean birth, but had no idea why she may not have wanted a forceps delivery when she was asked in labour ward “Do you want forceps or a caesar?”
Contact your local Pelvic Health Physiotherapist if you want help with your pelvic health issues or understanding about your risks. Check out the Australian Physiotherapy Association Choose Physio search engine
