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Our aim is to gather support to set up the Pelvic Floor Care Foundation - it will be a not-for-profit organization with a mission statement to increase awareness and education of the need to look after the pelvic floor. The government and the education and health system are doing nothing on an issue that effects all Australian families at some point.
The main impetus comes from the experience of observing what my partner has gone through with pregancy, birth, uterine prolapse surgery, and post-surgery complications. And now my own worsening Inguinal Hernia. I just thought if I my humble little attempt to do something inadvertently saves just one person from having their guts fall out between their legs then it's been worth it.
Our experience has been life changing, and could have so easily have been much worse. I got extra inspiration to do something about the appalling lack of awareness and government suppport for PFC from awesome parents like Sue-Anne Sanig, little girls like Kimberly Sculli and Cassy Brown. See their story at the excellent 60 Minutes report, The Stump Club 17 Sept '06, here, including the transcript and video. Also check out and support The Stephen Sanig Foundation here. It's about the deadly meningococcal disease, and is another alarming reminder of the fatal dangers of parents just going along with the way our society is currently setup.
This foundation is going to develop much more slowly unless we can get any early boost. We need to get some people on board early - influential members of the community, prominent members of the medical profession, and people who feel a genuine affinity with the foundation's challenge, company sponsorship, and an accounting firm to handle all receipts, disbursements and put up the foundation's quarterly financial statements on their website.
Then we can get moving with our basic objectives, which include:
- Get the government to improve the education system - add a subject for young girls to learn about the importance of doing Kegels - pelvic floor exercises pretty much all their lives, right from menstruation. Kegels strengthen the all important pelvic floor muscles, especially in preparation for pregancy and later in life
- More focus on the Caesarean delivery option - for many women in Australia the point is, if you have a great doctor and it's cooked why not get it out - why wait an extra 3-4 weeks, lug around, and then have that 4Kg - 10cm diameter head, come down and out that narrow canal. But remember, that's only a personal opinion of a partner, not a doctor, not a medical professional, even worse, a guy - but someone who has taken the matter seriously enough to try to force a few more plebs to take pregancy much more seriously - don't go blaming someone else. The important point is: "get off your arse and do the research yourself - gather the data - talk to people - look carefully at the pros and cons - of natural vs. caesar, specifically for your situation, because everyone is different - then carefully make the decision you feel you can live with". Obviously - there's no easy solution, pregnancy and delivery, whatever the situation has inherent high risk. But at least things are getting better, 100 years ago 50% of babies didn't make it. Now the technology is better, and the average couple has more access to relevant information, especially through the Internet. And if you've Googled your way here, i.e. you are reading my webpage on the subject, a plebeian's view, then it confirms the dearth of information available - what's the government doing, what are all the medicos doing, where are their webpages, why aren't resources, time and money allocated to this critical area of our society...
[An update here:] In early April '07 a news report that the NSW government would be cracking down on the Caesarian option - only to be allowed when there is a problem - something about it follows an American study that found a 4 time higher mortality rate for the 2nd, 3rd, 4th pregnancy, mention of malfunctioning placenta - report included NSW mid-wife's association spokeswoman - C Section referred to as a deluded quick-fix easy way out...
If the government is going to get involved like this, they need to do it properly and setup a comprehensive inquiry into the whole issue - not just rely on an outside country and culture.
Some of the things they need to look at:
- Obviously first is Pelvic Floor Care education - starting in our highschools. And also general public awareness education - especially through prime time TV government health commercials. The key issue here is people, usually low income (the infamous 3Ds, viz. Dirty, Dangerous, Difficult jobs - increasingly John Howard's socalled work choices bargain agreements) forced to do jobs standing all day, or activities involving heavy lifting. You see examples everyday especially in customer service counter work - Woolworths checkouts (at Aldi they can sitdown), Australia Post, etc.
- We need a breakdown of the American type study - especially by socio-economic / income class. The general impression is that the high incomers have Caesareans - you never hear of any high profile celebrities having problems. Obviously the numbers will skew depending on the quality of the medical practice - i.e. again an income issue.
- The U.S. is quite different to Australia - they have the highest incidence of teenage pregnancy - and no national health care system (Medicare) - the highest income inequality (executive to "3Ds" worker) of all developed countries; the majority of are highly fundamentalists, highly religious - Americans take the bible literally, and believe their god takes an extra special interest in Americans.
- Everyone knows that in any profession there are the dedicated, experienced and highly skilled, and there are the others that make more mistakes - it's a moral / ethics issue - we desperately need to be able to rate the track record of doctors and midwives, individually, see our push for a Morality Ratings Party
It's already been started by some victims in the cancer area. It's gonna make a big difference if you can look at the stats and see that this medico has a 1 out of 5 rating from previous patients, and this one 5:5
We know there is a rivalry between doctors and nurses / midwives. With advances in technolgy if Caesarens become clearly the lower risk option - midwives are out of a job. Certainly the quality and systems of the health system as it relates to both sides leaves a lot to be desired.
Some quick examples that we struck - our doctor retired, a Dr Desai (who needs to be struck of the register) sent us into a spin over a totally incompetent diagnosis that we were facing serious gestational diabetes, doctors not mentioning the importance Folic Acid... in the maternity ward - water breaks - bed saturated - if I (the partner) had not been there to keep up pressure to get the sheets changed... shift change 10 minutes after we went into the delivery room - 2 nurses replaced by little Irene, turned out to be serendipitous though, once things started to hot up, Irene intuitively tried something completely different (I didn't see any mention of it in my prior research) - Tara was out in 5 minutes - still have the gut feeling if not for the shift change might have been there all night...
- Nobody mentions Evo Devo - Evolutinary Biology. Probably because the Americans believe they were created by god with everything else in one busy week 6,000 years ago. The Pope is very happy that a South American country now imprisons women who have abortions (of course the males who got them pregnant are in no way culpable, are they?). The fundamentalist only care about maintaining their power and dogma - they're against contraception, even in when it means thousands die of aids in Africa. Obviously the Pope has a grasp of the issues, he's a male, has never experienced pregnancy and does not have a partner that has.
The Homo sapiens frame for the majority of its evolution reproduced in a non bipedal situation - utilizing 4 legs - the foetus / baby hanging from the belly underneath. The pelvic floor straps / flimsy elactic bands did not evolve to hold up a heavy weight plus the internal organs. The evolving increase in head / brain size didn't help either - the narrow birth canal in a natural birth struggles with that 8 - 10 cm head. Thus 'natural birth' really means starting the whole process on 4 legs (and probably in water!).
And this all includes the carrying of a heavy baby / toddler / weight around with one arm perched on the hip...
There is evidence that mother / offspring conflict starts at fertilization - factors like blood sharing and insulin generation re diabetes...
Technology advances are a big factor. Not so long ago there was a very high mortality rate even in advanced countries. It should also be remembered that with greater understanding of the process - molecular biology, etc we now know that there are a heck of a lot of 'spontaneous' abortions / miscarriages that the women doesn't even know about soon after fertilization - they're just washed out - again seems to be related to mother / potential offspring competition re natural selection forces.
What's the big picture - how do you weight the important factors. Over the longterm which option is conducive to the well-being of the family. Including the optimum number of children, given socio-economic factors. Maybe if you are looking at more than 2 offspring you have to accept the higher risk.
If you have a Caesarian, you are looking at major abdominal surgery. We need to look at the recovery rates if it's performed under increasingly high quality conditions. If a woman has 3 or 4 or more natural births, coming at it from a low socio-economic angle, including little pelvic floor care awareness - no Kegels starting from the early teenage years, etc - then she is looking at the higher risk of prolapse problems. Then you are facing 'ongoing' major surgery. Remembering that the latest survey shows that 1 in 5 surgeries result in complications...
It still comes down to the individual - if the mother and partner won't become active in pushing the government, there will never be any real improvement, and that means average Australian families remain in big trouble.
The fundamental problem is apathy - everyone leaves it to someone else to do something about it, especially when elected government representatives continue to do a bad job.
The apathy / selfish point is driven home by the fact that people - victims or potential victims - find this webpage, for the lack of any better government information, BUT, are still not prepared to lend a hand - we can't even find 5 founding members to incorporate our Foundation with the NSW Fair Trading Office, which my Accountant, Kenneth Jones, ACA (Kwik Tax) tells me will only cost a couple of hundred dollars to register and get the ball rolling.
That's the bloody problem - no cooperation at the grassroots, we all lose - the classic Prisoner's Dilemma.
You know who I'm talking about? YOU!
Go ahead follow the sheep, the tradional way, as dictated by the Establishment / Government, keep your faith in the current system and the inability to check past professional performance, track records, customer reviews - morality ratings, don't give up some of your time like the writer has to have a go at forcing a major overhaul of systems and procedures.
Let's just hope we are not in the unlucky 1 in 5 group whose family suffers the consequences of post-'procedure' complications, let's hope it happens to someone else's family, then we can always make ourselves feel better by saying, "Oh dear, sorry to hear that happened to you. Umm gotta go..."
Anyways... let's at least get some of the peer group pressure off a woman feeling she must have vaginal / natural (?? - refer Evo Devo above) delivery - that it's so clearly the first preference.
Having observed what my partner has been through I think back to those times when women get together and talk about the birth(s) - ineluctably there creeps in that subtle probing question, which becomes a euphemism for "Were you a woman or a chicken?!" - have you had the ultimate experience only a real woman can have...
Well, if for some reason you have to keep up appearances... lie!
Tell 'em a good old whopper, "Yep it was horrible, long labor, huge..."
If for some funny reason you are in a funny mood and have an over-powering urge to do - viz., reciprocal altruism - something you wouldn't normally do then crank up that email.
Alternatively send a donation, anything, a $2 money order made payable to the "Pelvic Floor Care Foundation". One day we hope it will be a trax deduction (if we can get the Tax Commissioner / Our Government in an equally strange mood!).
If we could just muster $10,000 to start off we could get the foundation to first base. See contact details below.
More on Personal Experience
Let me just say upfront, I'm not exactly a newbie to the health 'system'. My two sisters and a couple of girlfriends were nurses at St George Hospital. And for many years I worked for a multi-national pharmaceutical corporation - an insider's view of what goes on in the blurry world of drugs, medical research, clinical trials, doctors, politicians, big business, journal articles, peer group stakes, etc, etc.
- My partner's pelvic floor problems, specifically prolapse, began to worsen at around 7-months pregnant.
For a blow by blow description of the whole ongoing nightmare click here.
I made detailed notes because action is being taken against all those parties who were clearly, in legal terms, 'grossly negligent', put another way, in more techical terms, some were just plain 'callous arseholes'. At the very least if they choose to avoid 'atonement' they will be publicly shamed.
Some proof of what we went through
A summary of what happened follows:
- My partner works for Australia Post standing and lifting all day behind a counter at a Post Office.
This is where things really went wrong. Amazingly, at a large corporation like Australia Post, where so much of the work has a direct impact on the pelvic floor area, there is no enforced policy to allow 7-months pregnant women working on a post office counter to get some backoffice work, some sitdown time. Instead at the time in late '02 at Potts Point Post Office when my partner was going through it, she had an acting postal manager (no other PM wanted the job because the area is so dangerous) with major 'personal' problems, a lesbian, who just didn't related to the needs of a pregnant woman, who later quit for a second time after another mental breakdown. And no policy of even rotating the backoffice among counter staff, so that they could add to their skills / résumé and get out of dangerous Kings Cross, let alone a heavily pregnant women. Instead the same guy from the counter staff was able to get all the backoffice work for some 5 years, and was running his private business from out there. At one stage apparently he even had the post office phone and fax number on his personal business card. A ludicrous situation that did not help Sumitra's pregnancy at all.
Anyway, we went through the public system, starting with the Gynae Clinic at St George Hospital - Dr Danny Chou (one of the VMOs there - most specialists have a private practice and come into the public system now and then) was our quasi gynaecologist.
- Tara was born New Year's Eve 31 Dec '02
She was induced due to infection concerns a week late (4Kg)
- after the birth put on the waiting list for surgery to have her guts pushed back up.
- finally surgery some two and a half years later - performed by Dr Jason Sly (apparently soon after rotated to Wollongong).
- then post-surgery complications - "Urine Retention" - started with a catheter up her urethra to release urine for 3 weeks, then graduated to an SPC (suprapubic catheter) through tummy directly into the bladder for the long-term.
Then begins the "big pass around", repeating your story over and over, wondering if this one might be able to help - a long list of medicos, starting with various resident doctors during various stays in Gynae Ward of St George Hospital: Dr Will Kutessa, Dr Trent Miller, Dr Izurieta(?), Dr de Souse(? D'Souza?) Dr Erin Martin, Dr Alex(?)...
Also went to Pelvic Floor Bladder Unit, Department of Urogynaecology headed up by Associate Professor Kate Moore - apparently one of the best in the field, thus pretty inaccessible - fastest appointment we could get was in 2 months. So you're dealing with assistants again, started with Nurse Jeanette Werda (CNC)...
Even went to a private practice - Dr Peter Aslan, urological surgeon, Urology Sydney, St George Medical Centre - short shrift...
Back to the public where perseverance led to finally seeing the first specialist at St George Hospital in the problem area, 8 weeks after it all started, a Urogynaecologist, Dr Emmanuel Karantanis and got SPC takent out.
We thought the nightmare was almost over. Then it all started up again - we get handed back to the Bladder Unit, another assistant, Nurse Virginia Ip, (NCA)...
Back to the Internet to have another go at finding a good and accessible urogynaecologist. Then a major change in luck, we stumbled onto Sydney Urodynamic Centres and Dr Andrew Korda (who is also Chairman of the Pelvic Floor Unit at Royal Prince Alfred Hospital). We got an appointment quite quickly (they have 7 centres spread around Sydney).It's an extremely efficient setup, you have highly skilled experts that get straight into testing, have a look inside and identify what the problem is - it took us 10 weeks to get to that point. Identified bladder spasms - overactive detrusor - need for Oxybutynin / Ditropan. Big improvement in passing urine but sideffects...
Then we finally got to see A/Prof Moore, over 3 months after the nightmare started...
Suffice to say it can become a merry-go-round. Most of the people you deal with are wonderful - highly skilled, caring and dedicated...
To top off the frustration, just when she badly needs a long holiday to get over the nightmare and time to consider a lifesytle change - callous, heartless, unfeeling personnel managers at Australia Post give her the run around on allowing her to take her entitled Long Service Leave. This one really poorly run monopoly.
Really leaves you with a sense of bad karma - if ever any of these players have a loved one with pelvic floor dysfunction and long-term catheter infection problems...
Considering, the lack of productive activity and education on pelvic floor care, the difficulty of getting our foundation off to a decent start, and what we went through (especially when you have a little toddler that you are dragging around and Mummy doesn't come home...) it sure would seem appropriate if our foundation's first group of supporters were the aforementioned.
Hindsight / learning the hard way:
- prevention is always better than the cure - look after No. 1 - always be saying to yourself, 'is this good for my body over the long-term' - forget money pressures, it isn't worth it - put the effort into private research (aka the Internet) to make sure you are going the right way.
- Avoid catheters, especially indwelling for more than a few days - they should be a last resort - re risk of infection and bladder spasms and the need for Oxbutynin / Ditropan (with probable side effects), if you have to have one, get taught CISC (clean intermittent self cathetization) in the ward to build your confidence, i.e before discharge - it might seem unnerving to stick a disposable catheter up your urethra every time you need to pee, but the alternative is a likely nightmare.
- regular tests for UTIs (urinary tract infections) in particular get a urine culture to make sure the antiobiotic you are initally given is not useless.
- there's a lot of dedicated medical people out there - if you catch them in the right circumstances they can do wonders. Unfortunately, the hairy issues are systems and organization. You hear a lot about funding problems and lack of beds, but one wonders what effect it would have with a bit more focus on these issues and just plain old 'awareness' in the first place.
- if you are in the least bit concerned about things not looking quite right get your specialists (including backups - don't leave all your eggs in one basket) lined up early i.e. referrals and appointments, ideally before the operation. Don't it always seem to be the case that when you need an expert in a certain area, tomorrow - the secretary says the next slot is weeks from now (unless you are rich, Kylie Minogue or Prime Minister John Howard's daughter) by then things could be a whole lot worse.
Some other points
Getting an uncontaminated urine sample
Most doctors will just hand you a little yellow specimen container and tell you nothing (probably because they don't know) about how to take a proper clean catch MidStream Urine (MSU) sample:
- preferably get the first one of the day upon waking - first, cleanse the vaginal opening with plain water or antibacterial soap - pad dry with a paper towel - start passing urine, don't stop and start, but catch a sample midstream - careful not to let urine touch body parts (vaginal lips and perineum) or pubic hair - i.e. spread legs - even try sitting backwards on toilet.
Then take the sample yourself straight to the lab (of course you will need to get a script and container from your doctor beforehand) as soon as possible - it compromises the reliability of the results if it sits around for a few hours somewhere. If you can't drop it off within an hour or so stick it in the bottom part of the fridge. If taking it a long distance from your home and it's a hot day, put it in an esky.
A bad sample - like getting a bug inside that container from outside the urinary tract (urethra - bladder - ureters - kidneys) from the upper thighs, around the crotch, etc. could lead to being put on antibiotics, harming your immune system, etc., when in fact you have no UTI.
Of course always wear cotton underwear, your entire life, and if it's hot and humid avoid tight jeans. And if you suspect something may be up, especially unusually frequent urination or burning, apart from professional diagnosis, try the old cranberry juice.
If you ever have to go to hospital for surgery, take a notebook - keep a detailed diary of everything that happens - and all names of doctors. Be very aware of good hygiene. I've heard that in some countries in Europe patients can have their own stethoscope - so that one that has been in contact with countless other bodies doesn't get put on yours.
And the most important piece of advice?
Study. Learn. Read. Google.
Don't rely on other people. Do it yourself. Even if you think you are not highly educated, step by step, you will get better at understanding it. We are lucky to have the Internet now - there's heaps of well put together webpages out there.
Why? You just can't rely on other people, family, partner, doctors, specialists - many for whatever reason don't keep up with the latest developments, or they do know, but have lousy systems and procedures. You fall through the cracks.
Once you are up to speed, when you go into the doctors office, do some "name-dropping" - big words, medical terms, jargon, drug brand and generic names... let them know straight off that "you know" - then they won't be so condescending, patronizing and dismissive.
Share your experience. Let us know what worked and what didn't, who helped and who didn't. Half the battle is finding good doctors and specialists.
To top it all off Pete has also developed a hernia (inguinal) too. No doubt not helped by standing and lifting behind a Post Office counter for 3 years in his mid 40s. Not surprisingly Pete is caught between a rock and a hard place - what we've been going through with the my partner's mess, her mental instability, recent news reports confirming 1 in 5 operations result in infection or other post-surgery complicaitons (November '06 produced by Medibank Private). Thus in my case the worsening hernia will remain untreated. Who knows, maybe that will save a lot of headache. When to accept that shit happens and devote the failing bodybag to trying to improve the system instead. That is the final question.
Check back soon for more updates.
If you can help on any points let us know
Peter Hogan
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