Monday 30 June 2014

Prolapse: (Not) In the News





The following statistics show how many news articles turn up in a Google News search for each of these major women's health issues:
 
Polycystic Ovarian Syndrome: 3,700
Osteoporosis: 25,200
Breast cancer: 903,000
 
How many articles are there on prolapse?

525
 
I am of course not suggesting that prolapse is equivalent to cancer. I merely want to point out that, as far as women's health issues are concerned, prolapse receives very little media attention, particularly considering that it effects a greater percentage of women than any of the other conditions listed above.

Perhaps, however, this doesn't surprise you at all. After all, many women have never heard about prolapse before they are diagnosed with it.

You can help us raise awareness about prolapse by:
  • Talking to your family and friends about it, the way you would any other health condition
  • Sharing our prolapse infographic on social media
  • Seeking treatment, and being frank with your GP about your symptoms and the effect they have on your life (we need to raise awareness among health professionals too)
If you would like to do something about the lack of media representation of prolapse, contact newspapers and TV news programs in your area and tell them that there is a story that needs to be run about an issue that affects many of their viewers.
 
It is only through increased awareness that we will get better treatment and less stigma.

Sunday 29 June 2014

The Benefits of Pelvic Floor Training



 
 
Pelvic Flor Training (PFT) is a good treatment option to help many women manage their prolapse.
 
Increasingly, there is evidence showing that PFT can improve the symptoms of prolapse in women who do not have too much damage to the ligaments connecting their pelvic floor muscles to the bone.
 
The two keys to effective Pelvic Floor Training are that it needs to be undertaken consistently and with the supervision of a professional Women's Health Physiotherapist.
 
An information sheet on PFT from Physiotherapy New Zealand can be found here: Pelvic Organ Prolapse - What is it and How Can Physio Help?
 
For our readers in New Zealand, this page also has a link to help you find a qualified Women's Health Physiotherapist.
 

Saturday 28 June 2014

Psyllium for Bowel Management


Psyllium husk, often prescribed for constipation
 
One of the main lifestyle changes you can make to manage your prolapse is to avoid constipation. Straining to pass a bowel motion can put a lot of pressure on your pelvic floor, which should be avoided to prevent your prolapse from getting worse.  
 
While you should begin by drinking enough water and getting enough fibre in your diet, your doctor may also prescribe medication to help you have regular bowel motions.
 
One product often suggested is Psyllium. Because this is a natural supplement, it can be more difficult to get scientific information about how effective it is, and about how it interacts with other medication.
 
Luckily, New York University Medical Centre has put together a very thoroughly researched fact sheet on the uses of Psyllium, including preventing constipation: Psyllium.
 
There is some very important information on this sheet that you should read, including when to take Psyllium to prevent it from interfering with the absorption of other medications. I strongly recommend you read this information before using this product.

The Importance of Getting Your Prolapse Information from Professional, Scientific Sources


Make sure you are selective when getting medical information from online sources such as You Tube
 
The internet is a great tool for managing your prolapse. Considering that many doctors still do not have a good awareness of prolapse, it is a place where you can find out more about your condition. Even though most people feel uncomfortable discussing prolapse in person, online you can find lots of people willing to share their experiences with you.
 
However, there is a downside to using the internet as your primary source of information, and that is making sure that the information is accurate, based on science, and that the person giving you the information has no ulterior motive.
 
A good example of this problem is You Tube videos about mesh surgery. A recent report presented at the American Urological Association 2014 Annual Scientific Meeting found that two thirds of all videos about mesh surgery for prolapse were posted by legal firms. Lawyers are not generally recognised as experts in women's health. It is more likely that they posted these videos, usually very critical of mesh surgery, to try and find women who had experienced complications from mesh surgery and would like to sue. You can read an article on this case here: Patient Perceptions of Vaginal Mesh From YouTube and TV.
 
When looking for information on managing your prolapse, think carefully about what the person who produced the information may be hoping to achieve.
 
A good place to start is here, at the Prolapse Information Project. I have no financial share in any prolapse-related products, and I strive to bring you only scientifically-backed information from reputable sources.

Friday 27 June 2014

Mesh Surgery in the News

Elevate prolapse repair mesh

A common type of prolapse surgery currently being used involves using a synthetic mesh to support the pelvic organs. It is the alternative to the more traditional type of surgery known as 'native tissue' surgery, which uses the woman's own muscle and ligaments to do this.
 
Mesh surgery is controversial because although it has worked well for many women, it has a relatively high rate of complications. These include incontinence, pain during sex, and complications from the mesh eroding the vaginal walls. You can read more about this in the Cochrane Review of Prolapse Surgery.
 
The controversy about mesh surgery has been in the news recently.
 
You can read about the halt to all use of mesh surgery for prolapse in Scotland here: "Cheers and tears for brave mesh victims as controversial operations are suspended."
 
This article from the Wall Street Journal details the large-scale Embrace study currently underway in America, testing the safety and effectiveness of one the most common mesh products, following a recent FDA advisory on the topic: "American Medical Systems Enrolls First Patient in Embrace."
 
Links to news articles are provided only to keep you up to date with what is happening around the world with the issue of prolapse. These articles are from mainstream newspapers, not scientific sources, and are not intended to provide information about how to manage your prolapse.
 

Free Physiotherapy Instructional Videos

There is increasingly strong evidence for using physiotherapy by a trained Women's Health Physiotherapist to manage prolapse.

Michelle Kenway is an Australian Women's Health Physiotherapist. She is passionate about educating women about pelvic floor exercises and safe exercise for prolapse, and has produced a number of free publicly-available resources for women.

It can be difficult for women with prolapse to get accurate information about exercise. Michelle Kenway's You Tube channel has a number of videos about this topic, including many showing pelvic-floor safe exercise. You can find this here: Michelle Kenway on YouTube.

Here is one of her videos "Back Exercises for Women that Safely Strengthen and Tone":



At the Prolapse Information Project, I strongly recommend getting advice from a Women's Health Physiotherapist before beginning any exercise routine. However, I recognise that due to your location or economic circumstances this isn't always possible. Exercise information on the Prolapse Information Project is only intended as a general guide and may not be appropriate for every woman.

Thursday 26 June 2014

GPs: What do Your Patients Want when They Come to See You?



Women with prolapse often feel disheartened after an appointment with their family doctor. They report feeling as if the GP didn't believe them, or didn't understand the impact prolapse has on their lives. This is a real barrier to women managing their prolapse effectively.
 
However, prolapse and the constellation of symptoms around it can be difficult to deal with as a GP with no special training in women's health. It can also be hard to fit in an impromptu counselling session if you only have 10 or 15 minute slots in which to see your patients.
 
A useful way of trying to overcome this problem is to ask the question: What do your patients want when they come to see you?
 
Of course patients want medical advice. However, in order for you to deliver this advice effectively, and for patients to follow it, it may be helpful to think about what else your patients want when they come to your surgery.
 
  1. Patients want to be heard. Many women with prolapse have suffered in silence for months or even years. You may be the first person they have spoken to it about. Discussing symptoms to do with their genitals, sex life, or continence may be very embarrassing and distressing - it may have taken a long time for them to get up the confidence to see you. Repeating the symptoms they have described back to them as confirmation is one way you can show you have heard them.
  2. Patients want to have their concerns taken seriously. You may feel that a patient has nothing to be concerned about. But if they have made the time to come and see you about a taboo topic like their genital health, then they are concerned nonetheless. Saying something as simple as "It sounds like your symptoms are distressing" shows that you respect the patient's experience of their own body, without invalidating any reassurance you then give them.  
  3. Patients want you to be honest, including being honest about your level of knowledge. GPs are in a difficult position, because patients often expect them to have an encyclopaedic knowledge of every condition. You may feel that you have to maintain this illusion in order for your patients to respect you and listen to your advice. However, the vast majority of your patients would much rather you refer them to a specialist if you are unsure about how to diagnose or treat their prolapse.
Early detection and management of prolapse can vastly improve the health of many women, and GPs have a vital role in making that happen.
 
If you know a GP or other health professional who would be interested in this resource, or who may benefit from using it as part of their practice, please feel free to direct them to this website.

Wednesday 25 June 2014

A Not-For-Profit Organisation Providing Cheap Continence Aids in Australia


Independence Australia


 
Independence Australia is a not-for-profit organisation that aims to help people with disabilities lead full lives.
 
They fund their work partially through their store, which sells a variety of disability aids and continence products. You can visit their store online here: Independence Australia.
 
Because Independence Australia want more people to be able to access the items that they sell, they often offer good discounts. They also offer online shopping, and discreet delivery. Any profits go to supporting their other work, such as providing attendant care and counselling to people with disabilities.
 
This information is provided merely to make you aware of the services available. The Prolapse Information Project has no association with Independence Australia, and does not endorse any one retailer or product.

Tuesday 24 June 2014

Bethesda Hospital Prolapse Information Video

You may have already had a look at the information sheets and diagrams that can be found by clicking the Information Sheets tab. But you may have found the language confusing, or the diagrams unclear. You may find this information easier to understand presented in the following video.

Bethesda Naval Hospital in America has created a great detailed video to explain prolapse to its patients.

This video can be accessed on YouTube, or viewed here:


The video covers the following points:
  • What is prolapse?
  • Different types of prolapse (explained using animated diagrams)
  • Types of treatment that are available
  • An overview of some types of surgery
  • A detailed explanation of Sacrocolpopexy surgery
  • A discussion of the risks and benefits of different types of treatments
These points are explained clearly in everyday language, making this video a great starting point to understanding prolapse.

Warning: This video includes footage of a Sacrocolpopexy surgery. This footage begins at 6 minutes. Please stop watching the video at this point, or do not watch the video at all, if this will be distressing to you or if it will stop you from seeking appropriate treatment.

Monday 23 June 2014

National Association for Continence "Tools for Patients"




The National Association for Continence is an American organisation that aims to help women and men with continence and pelvic floor problems.
 
They have put together a page of excellent resources for women with prolapse, both in America and around the world: Tools for Patients.
 
General resources that can be used by all women, and their advocates, include:
  • Information on patients' rights and informed consent, including a clear list of the information you should be given as a patient
  • A summary of the latest findings and FDA statements about the use of mesh in prolapse repair surgery
  • The questions that your surgeon should ask you before recommending a particular type of surgery, and the information you should be given about your condition and the suggested treatment
One of the most important parts of managing your prolapse is knowing the right questions to ask when you are talking to a health professional. This resource will help you to go into important conversations well-informed. It is also useful to read this if you will be advocating for a woman with prolapse at medical appointments.
 
For women in America, there is information on the 'Centres of Excellence' program, which identifies clinics that are specialists in dealing with prolapse. This is very important, as it can be extremely difficult to find a surgeon or practitioner who is experienced in dealing with prolapse and in whom you are confident. This program aims to take the guess-work out of the process by identifying health professionals who meet certain standards in training and results. 

Sunday 22 June 2014

Once You Have Chosen Surgery, What are Your Options?

the Royal Womens Hospital



Making decisions about which treatment path to take can be difficult when you have a prolapse. Each path (conservative management, pessary, or surgery) has benefits and drawbacks. There is a lot of conflicting evidence, and often not much objective research.
 
So it can be very disheartening if you make the decision to proceed with surgery to then find out that there are so many types available, and that there is a lot of controversy about many prolapse repair techniques.
 
The Royal Women's Hospital in Melbourne, Australia is a well-respected research hospital. They have put together the following information to outline the main types of prolapse repair surgery available, and the dangers and benefits of each: More about surgery.
 
Reading this resource can really help you to be informed about procedures that have been suggested to you. It can also help you to determine if your surgeon is right for you. If they are suggesting a type of surgery that seems less appropriate than another, considering your lifestyle and health, then it might be a good idea to seek a second opinion.
 
Surgery, like all forms of prolapse treatment, is a big decision that can have a huge impact on your quality of life. Make sure you are informed and confident before you proceed.

Saturday 21 June 2014

Wound Care - How to Look After Yourself Post-Operation or After Childbirth




 

There is a lot of conflicting information on the internet about how to care for wounds. Much of it is unfortunately not based on clear evidence.

Your first source of information should of course be the health professional who performed your surgery or delivered your baby. However, it can be difficult to know where to turn if the information you have received is insufficient, contradictory, or if you received no information at all.

The following page from Mater Hospital in Queensland provides up-to-date information on how to care for a third or fourth degree tear following childbirth: Recovering from 3rd or 4th degree perineal tears.
 
Though this page naturally includes specific information on third a fourth degree tears, it also has good general guidelines on caring for genital wounds. It also warns you against some of the incorrect advice circulating on forums (such as drying yourself with a hairdryer, which can put you at risk of burns if you have reduced sensation in the area). Remember, online forums are best used as a source of support, or as the start of your research into your treatment.
 
The most important thing to remember is that your wound requires regular cleaning and monitoring. Though you may not want to look at or touch the area, particularly if you have just had a traumatic birth, it is vital that it receives proper attention. If you can not bring yourself to care for your wound, ask a trusted family member or friend to help you. If you do not feel comfortable doing this, then you need to urgently seek help from your doctor or hospital. You are at risk of infection or other complications if you do not keep your wound clean. If you cannot get help anywhere else, go to your local hospital emergency department, and explain that you need mental health support in dealing with your wound.
 
As always, I encourage you to ask for the help you need, and to continue asking until someone helps you.  

At the Prolapse Information Project, I always recommend you seek professional medical advice, even if it means that you need to seek a second opinion in order to feel confident about what you have been told. The information in this article is provided only to help you become informed about your care.

Friday 20 June 2014

The Best Evidence for Oestrogen Use in the Management of Prolapse





 
In the previous articles summarising current research about pessary use and physiotherapy, I explained that a Cochrane Review is a one-stop-shop when it comes to finding out what the latest research tells us.

This article is about the Cochrane Review of Oestrogen to prevent prolapse, which can be found here: Oestrogens for treatment or prevention of pelvic organ prolapse in women.

Oestrogen is a hormone. It is often prescribed to women with Prolapse,  usually in the form of a cream used internally in the vagina. When women go through menopause the amount of Oestrogen in their bodies decreases and this often leads to thinning of the vaginal walls. Doctors therefore believe that Oestrogen cream may thicken the vaginal walls.

The common reasons that women with prolapse are prescribed Oestrogen include:
  • Their symptoms have become worse, or noticed for the first time, since menopause
  • They are about to undergo or have just had prolapse repair surgery, and it is hoped that the cream will help in their healing
  • They are using a Pessary, and the cream is being used to try and prevent irritation or injury caused by the Pessary
  • The prescribing health professional hopes that by thickening the vaginal walls they can lessen the symptoms of the prolapse, or stop it from getting worse
Considering how widely it is prescribed, you may be surprised to hear that the Cochrane Review found no studies about Oestrogen for prolapse.

This doesn't necessarily mean that it doesn't work, or that it is dangerous. However, it does mean that we don't have any clinical evidence either way. Many women report that they find it helpful - and by all means continue to use it if you are one of them.

However, this review does clearly indicate an urgent need for more research on this topic so women with POP can make an informed choice. It is simply not good enough that a medication is being prescribed so widely without firm evidence to back it up.
 

Thursday 19 June 2014

Do Genetics Contribute in Some Cases to the Failure of Prolapse Repair Surgery?

Charbel Salomon and Patrick Culligan, two of the lead researchers


One of the main issues that prolapse researchers are working on is trying to unravel the reasons behind the unacceptably high failure rate for prolapse repair surgery.

A team of researchers in the Atlantic Health System in New Jersey are currently in the last stages of a study trying to determine if there is a genetic factor in women for whom the repair fails without an obvious cause soon after surgery. Their research design (a summary of what they hope to achieve and how they are going to go about it) can be found here: Do Patients With Early Post Operative Recurrence of Pelvic Organ Prolapse Have a Genetic Predisposition?

No results have been published from this study yet, so it is far too early to draw any conclusions. However, if these researchers do find a genetic link to unsuccessful surgeries, it could help practitioners more accurately determine who is an appropriate candidate for surgery.

I will keep you updated on how this research is progressing.

Wednesday 18 June 2014

June is Prolapse Awareness Month

Share this prolapse inforaphic from the National Association for Continence, to help raise awareness of prolapse
 
June is prolapse awareness month. It was started by the Association for Pelvic Organ Prolapse Support (APOPS), which is an international organisation that raises awareness of prolapse.

Like all prolapse organisations, including the Prolapse Information Project, APOPS was only formed recently and still largely depends on the participation of supporters. So, while there are some official APOPS events for Prolapse Awareness Month, APOPS is encouraging women and health professionals to organise their own events.

Because the Prolapse Information Project is based online, I am encouraging readers to post the infographic above on any social media sites they use, such as Facebook, Twitter or Pinterest. It provides basic information about prolapse, and explains how common it is.

Many readers would not have heard of prolapse before being diagnosed with it. Still others may have lived with their symptoms for years, thinking they were the only ones with those symptoms. While you may feel hesitant to raise awareness of prolapse because it may make people realise that you have a prolapse, you have the potential to really change the life of someone you know who is suffering in silence. Something as simple as sharing this infographic could have a huge impact on the life of one of your family or friends.

It is time for it to be as socially acceptable to say "I have a prolapse" as it is to talk about any other serious health condition. This change starts with each of us.

Tuesday 17 June 2014

The Best Evidence for Pessary Use in the Management of Prolapse


Types of pessaries: Ring (A), and Gellhorn (C) are the two most common types used to manage prolapse symptoms

As the article The Best Evidence for Conservative Management of Prolapse will tell you, a Cochrane Review is an article written by experts in a medical field summarising the latest research about a particular condition.

The article mentioned above provides information about conservative treatment (mainly physiotherapy) of prolapse.

The following Cochrane Review gives you a summary of the latest information about the effectiveness of using a pessary: Pessaries (mechanical devices) for managing pelvic organ prolapse in women.

A pessary is a support for the vaginal walls, usually made from silicone, that is worn internally. While some women find that a pessary will not stay in place or is not comfortable due to other injuries or conditions, many women find that using a pessary can reduce their prolapse symptoms and even allow them to do a greater variety of activities.

As always, I recommend that you read the summary of the review yourself, and draw your own conclusions, but here are some of the key findings:
  • Only one study of the effectiveness of pessary use has been conducted
  • This study compared two of the most commonly used types of pessaries, the ring and Gellhorn
  • The study found that both types were effective for the 60% of women who completed the study, and that they worked as well as each other
Because there has only been one study about pessary use, there still needs to be a lot more research before any firm conclusions can be drawn. It is promising, however, that this initial study has had positive results.

Monday 16 June 2014

The Best Evidence for Conservative Management of Prolapse




 
I strongly believe that it is important for women with prolapse to be as informed as possible about their condition and management options - particularly considering that many health professionals unfortunately do no have an in-depth knowledge of prolapse.

However, it can be a bit daunting for someone from a non-scientific background to access information that may rely heavily on statistics or technical language.

A good place to start for scientific information on any health condition is to see if there is a Cochrane review about it. A Cochrane review is a report published by experts in a medical field that summarises all of the current research on a particular topic. It means that rather than having to find and try to understand lots of specialist scientific papers, you can read the summary of one report and get a good idea about what the latest research is telling us about prolapse.
 
The Cochrane review about conservative management of prolapse can be found here: Conservative Management of Pelvic Organ Prolapse in Women. 'Conservative treatment' refers to non-surgical methods for managing prolapse including physiotherapy and pessary.
 
It is well worth reading the short summary of this review, but some of the key points include:
  • There has not been much research on this topic, which means that there is still a lot of questions that need to be answered
  • Pelvic floor muscle training (PFMT) seems to improve bladder and bowel function in many women with prolapse
  • PFMT seems to improve prolapse level by around 17% in many women with prolapse
  • PFMT, perhaps not surprisingly, seems to improve the general functioning of the pelvic floor
This review concludes that conservative treatment, particularly physiotherapy, can provide at least a small improvement in symptoms for many women suffering prolapse. Further research is needed to see which women are more likely to benefit, and which physiotherapy treatments provide the greatest benefit in each case.
 
Cochrane reviews are also a great resource for busy health professionals who want to keep up to date with the literature on a number of topics. These reviews are updated frequently, which means that you can check back every now and then to see what the latest consensus is, without having to read and synthesise every new piece of research that comes out.

Sunday 15 June 2014

Prolapse After Childbirth: Common, Not Normal

 



Many women are told by health professionals - GPs, midwives, obstetricians, and gynaecologists - that prolapse after childbirth is normal. In the vast majority of cases, this is probably intended to be reassuring.
 
It's also true that prolapse after childbirth is common, but there is a subtle but important difference between common and normal.
 
Common means that something often happens. Women do often experience prolapse after childbirth, as a result of labour or of the pregnancy itself. The most recent data suggests that at least 1 in 5 new mums experience prolapse, and this figure is being revised up as more women feel able to seek help for their symptoms.
 
Normal has a different meaning. It suggests that not only is something to be expected, but that it is acceptable and perhaps even inevitable. To a pregnant woman, telling her that prolapse is normal implies that there is nothing she can do to prevent it happening, or to stop it getting worse if it has already occurred. To a mum with prolapse, it tells her to just accept what has happened, and not to bother anyone about it. It implies that prolapse is a normal, but unspoken, part of being a woman and she will just embarrass herself if she brings it up. It tells her that other women just deal with it, and that if she can't face just dealing with her symptoms (however distressing) then she is not a normal woman.
 
Telling a woman that prolapse is normal is giving her a life sentence.
 
If you are a health professional, consider carefully the message that your words give your patients, however unintentional.
 
If you are a woman suffering from prolapse, do not feel pressured into just accepting your condition as it is. Ask for help, and keep asking until someone helps you. A good place to start is the Getting Help and Resources tags on this website.

Saturday 14 June 2014

Women's Health Queensland Prolapse Information Sheet

This series covers information sheets about POP from professional health organisations. These pages, though they don't necessarily go into a great deal of detail, are a good place to start. They help you gain a clear understanding of POP.

Logo for Women's Health Queensland Wide


The Women's Health website from the Queensland Government has detailed fact sheets on many common health conditions. Their fact sheet on Prolapse can be found here: Genital Prolapse Fact Sheet.

The strengths of this fact sheet include:
  • The level of detail it provides
  • It includes information about less common forms of prolapse, such as Enterocele and Urethrocele
  • Clear diagrams of different types of prolapse, and a diagram showing how a Pessary sits when inserted properly
The main feature of this fact sheet is that it includes a good outline of what examinations your health professional should do when diagnosing your prolapse. This means that you can go to your appointment mentally prepared for the physical examination. It also empowers you to make sure your health professional is doing a thorough job, particularly if you are seeing someone like a GP without specialist training.

Friday 13 June 2014

RANZCOG Prolapse Information Sheet

This series covers information sheets about Pelvic Organ Prolapse (POP) from professional health organisations. These pages, though they don't necessarily go into a great deal of detail, are a good place to start. They help you gain a clear understanding of POP.
 
Royal Australian and New Zealand College of Obstetricians and Gynaecologists
 
 
The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) has put out a short information sheet about prolapse: Prolapse of the Pelvic Organs. 
 
Though it has some information on what is referred to as 'conservative treatment' (which may include monitoring, physiotherapy or insertion of a Pessary), its main focus is on surgery.
 
The main strength of this fact sheet is that it includes a video that explains laparoscopy (a common form of prolapse repair surgery), and shows what happens during a laparoscopy.
 
While I encourage women to be as informed as possible about their prolapse and any treatment they undertake, you know yourself best. If watching a video like this will make you more anxious about surgery, then it may be better to read about what happens during the surgery rather than watching it.
 
Warning: The end of the video shows how laparoscopy can be used to treat Ectopic pregnancy. Stop it before the end, or do not watch it at all, if this will be distressing to you.

Thursday 12 June 2014

The Cost to Society of Leaving POP Untreated

 


Women make up half of the population. Approximately 86% of Australian women will have a baby over their lifetime, and of those, roughly half will experience POP.
 
Many of these women have symptoms such as incontinence or pain that restrict them from doing activities they would like at home or at work. For some women it even prevents them from continuing work, volunteering, or caring for children or other relatives. The unsatisfactory nature of so many current treatments, and the lack of knowledge about the condition, really compounds this.

I have often wondered what the cost is to society of 1 in 5 Australians being so limited in their activity.
 
Deloitte Access Economics was commissioned in 2011 by the Continence Foundation of Australia to try and answer this question. They were looking at all incontinence, not just prolapse - but prolapse is one of the leading causes of incontinence among women, who suffer from incontinence far more than men.
 
The figure they came up with was that incontinence cost the Australian economy $42.9 billion a year, not including the cost of actually treating or managing incontinence.
 
Considering this figure, prolapse and other conditions that cause incontinence (many of them, like prolapse, often related to childbirth) need to be a much larger focus of research and public awareness campaigns. The economic cost, and the human cost, is too high.

Wednesday 11 June 2014

A Tool to Help you Gain Confidence if you are Incontinent

Toilet Map Cartoon Logo



Leaving the house can be daunting when you are incontinent, let alone going on long trips. This can affect your family life, your relationship with your partner, and your career.

One tool that may be useful if you have a smart phone is an app showing you where the nearest publicly-accessible toilet is at any given time. Many of these apps are free, and show toilets in places like parks, town halls, libraries, medical centres and shops.

To find these apps, go to the iTunes store (for Apple), the GooglePlay store or the Android AppStore (for Android), and use search terms such as "toilet finder". Each app should tell you its price (try looking for ones that are free), and also have a summary of its features and ratings from users.

Some Australian apps (all free) are:
  • Aussie Loo - this app has three options: "I'm busting!" which gives you directions to the nearest toilets; and two search options (using the map or entering an address) which allow you to plan ahead.
  • Street' Loo - lists the opening hours of toilets, and has an 'emergency' button you can press to get walking, biking or driving directions to the nearest toilet. It also has a search feature.
  • Toilet Finder - tells you the 10 nearest toilets in either a list or a map.

The great thing about these apps is that you don't have to plan your trip as closely as you may otherwise have to. At any time you can take out your smart phone, open the app, and be directed to the nearest public toilet. For someone who has urge incontinence this can greatly increase the number of places they can travel to.

If you are in Australia and do not have a smart phone, you also can access this information on the following webpage from the Department of Human Services: National Public Toilet Map. You will need to plan your trip ahead if you want to use this resource.

For people who are not incontinent, this can also be a useful resource if you have a toddler who is toilet training.

If you know of any resources like this for your country, please share them in the comments below.

Tuesday 10 June 2014

Prolapse Management: Are you Eating Enough Fibre?

Kommissbrot.jpg
Eating brown bread instead of white is a simple way to increase the amount of fibre you eat
 
As I pointed out in the earlier post "Are You Going to the Toilet Correctly?" managing constipation is a really important part of preventing prolapse from becoming worse. Straining to defecate puts a lot of downward pressure on the pelvic floor, which may cause further damage.
 
A big part of preventing constipation is having a high fibre diet, which doesn't necessarily mean using supplements or additives.
 
The Australian Government's health resource, The Better Health Chanel, has put together a great resource about dietary fibre: Fibre in Food.
 
This resource includes information on:
  • The importance of getting enough fibre
  • How much fibre is enough
  • The two types of fibre and the different roles that they play
  • How to make the best use of the fibre in your diet (for instance, drinking enough water)
Perhaps the most useful part of this page is a comparison between a sample low fibre diet and a high fibre diet, showing how you can make a few simple substitutions to improve your fibre intake without radically changing your whole diet.

Monday 9 June 2014

Where to Find Information on Prescription Medications



One of the benefits of taking prescription medications rather than alternative remedies is that drug companies are obliged to produce detailed up-to-date information about each of their products.
 
You can access this information as a consumer on a number of websites:
  • Medicines.org.au (which has a policy of adding new information immediately after receiving it from drug companies, and is therefore very up to date)
  • Medicines Guide (produced by the Australian Government's 'Better Health Chanel')
  • NPS Medicinewise (produced by a coalition of healthcare professional organisations)
An example of an information sheet for a drug commonly given to patients with prolapse is Lactulose (a laxative). The drug information sheet for Lactulose on Medicines.org.au can be found here: Duphalac.
 
These websites are not a substitute for professional advice from a pharmacist or doctor, but they can be useful to 'fill in the blanks' or to give you additional information that a GP may not be aware of (considering the variety of medications that they deal with on a daily basis).
 
If you are unsure about something you have read, you can call an information line such as Medicines Line in Australia (1800 633 424) to speak to a pharmacist. If the information on these sheets conflicts with information a health professional has given you, you can go back to them to seek clarification, or get a second opinion.

Sunday 8 June 2014

Prolapse on "The Conversation"




The Conversation is an Australian news website on which specialists (usually academics) write articles about their field of expertise.
 
Caroline Gargett, one of the researchers in the Monash/CSIRO team currently working on improved prolapse repair surgery, has written an article about prolapse on The Conversation: What is Pelvic Organ Prolapse?
 
This article includes a good general introduction to prolapse, some thoughts about the impact it can have on a woman's life, and some of the developments in treatment.
 
She uses the following example to show just how common prolapse is:
 
"Considering these statistics, three generations of women in a family may potentially be affected at any given time – the new mum, her mum and her grandmother."
 
She also acknowledges the devastating and ongoing effect that prolapse, particularly if it causes incontinence, can have on a woman's life:
 
"...the impact of incontinence on the quality of life and daily functioning can be severe. Indeed, it’s comparable to the effects of having a stroke or dementia."
 
Gargett also speculates about why research in this area is just gathering momentum now, and why so many women still do not seek treatment:
 
"The reason so little is known about pelvic organ prolapse in the community is that these symptoms are incredibly embarrassing for women."
 
At the end of the article, Gargett mentions that she and her team are in the early stages of testing their new mesh and stem-cell combination surgery. As the article is from September 2012, this research has since been completed, and the results look very promising. The abstract (a short summary of the study) can be found here: Human endometrial mesenchymal stem cells modulate the tissue response and mechanical behavior of polyamide mesh implants for pelvic organ prolapse repair.
 

Saturday 7 June 2014

Prolapse Management: Are You Going to the Toilet Correctly?



Are you going to the toilet correctly?

It might sound like a trick question, but for a woman managing her prolapse, there is a 'correct' and 'incorrect' way to go to the toilet.

Making sure that you are in the correct position to empty your bowels is important for two reasons. The first is that women who have prolapse often also have urge or stress incontinence. Some types of incontinence can be managed better by improving toileting habits. Secondly, one of the main things that all women are told when they are diagnosed with prolapse (or should be told) is to avoid constipation and straining. This is because either of these things can put a lot of downward pressure on the pelvic floor, potentially worsening the prolapse. One of the ways to avoid this is to position your body in a way that makes passing stools as easy as possible.

Sue Croft, a Women's Health Physiotherapist and advocate has put together a great resource explaining how the bowels work, the importance of regular bowl movements for a woman with prolapse, and how to achieve this. Her resource includes clear diagrams, and can be found here: Managing Your Bowels Well.

This is a topic we are taught not to discuss, or even necessarily to think about, but it is a relatively small change that you can make privately and without seeing a specialist that, in some cases, may make a big difference to your continence and prolapse management.

Friday 6 June 2014

Talking to Your Partner About Prolapse


Talking to your partner about prolapse may be difficult, but is worth it.
 
Being diagnosed with a prolapse can feel very socially isolating. Worse, it may feel as if you can't even discuss the condition in detail with your partner. This may be because you are concerned it will cause them to see you differently, or it may be because you feel that you can't discuss symptoms such as incontinence.
 
However, if you can overcome your reservations, and share your condition with your partner, you may find that not only are they a great ally in your struggles, but that it may deepen your intimacy and strengthen your relationship.
 
Talking about prolapse with your partner may not be easy, particularly if you are not used to talking about your genitals with your partner, or about your health issues. The following websites cover communication skills. It may be useful for you, and your partner, to review these prior to discussing your prolapse in detail, in order for you to both have a positive experience of the discussion.
  • "How can we communicate better?" is produced by the charity LoveIsRespect.org, which promotes healthy relationships
  • "Effective Communication" is from HelpGuide.org, an online charity that provides accurate, up to date, mental health information
  • "Communication" is produced by Relationships Australia, a large Australian charity that gives people skills to have positive interpersonal relationships
For an example of a supportive partner, P. R. Newton's memoir And Then My Uterus Fell Out may be useful. Newton shared her problems with her husband, who proved to be a true partner to her.

If you have a pre-existing reason not to trust your partner, do not feel obliged to share information about your health with them. Use your judgement, and consider your emotional and physical safety. Sharing private details will not 'fix' a relationship that already has problems.

Thursday 5 June 2014

A Tool for GPs to Begin Conversations with Patients About Urogential Health

Though I am not a medical professional, I recognise that there is sometimes a lack of training and support, particularly for GPs, when it comes to diagnosing and treating prolapse. With that in mind, posts with the tag 'For Health Professionals' aim to share resources created by specialists for other health professionals.

Sue Croft Physiotherapist
Sue Croft, who is trying to raise awareness among other health professionals about pelvic health
 
 
Sue Croft is a qualified Women's Health Physiotherapist, who also works to raise awareness of pelvic floor health among the general public, and among other health professionals.
 
In a conversation with the Jean Hailes Foundation and some of her colleagues, she came across the attitude among health professionals that they were often frustrated by their patients' reticence when it came to talking about conditions like prolapse. Croft felt that the best solution to the problem was giving health professionals, particularly GPs, a tool that they can use to start this conversation with their patients.
 
Croft has come up with an acronym that GPs can use to remember to check for all of the common symptoms of pelvic floor dysfunction, including prolapse. They could use this at each PAP smear they perform, or even during the yearly physical check-up for each adult woman they treated.
 
The acronym is, appropriately enough, PIPES:
Prolapse
Incontinence
Pain
Exercise
Sex
 
You can read more about how to use this tool as part of your medical practice, including suggested diagnostic questions and treatments for each topic, at Croft's website: Incontinence and Sex - How do we get Patients to Tell us their Problems?
 
If you know a GP or other health professional who would be interested in this resource, or who may benefit from using it as part of their practice, please feel free to direct them to this website, or directly to Croft's.  

Wednesday 4 June 2014

The Importance of Being Able to Discuss Your "Down There" Anatomy

Most readers of this blog will live in a culture where you are not meant to discuss your private parts - certainly not with a stranger, and in some cases not even with an intimate partner. This means that when we absolutely have to, we use generalisations (see if you can spot the two used so far in this article).

So what's wrong with this, and how does it relate to prolapse?

Embarrassment about discussing our genitals is a big reason why some women do not seek treatment for their prolapse. It also means that when women do seek treatment, they often use vague descriptions that may give medical practitioners  an unclear idea about the situation. Unless you have a GP with truly phenomenal people skills, you are much less likely to get examined if you say "Things have been a bit different down there since childbirth" than if you say "I have a lump at the entrance of my vagina and my perineum is very sore."

One of the diagrams from Scarlet Teen
 
 
Here is a great resource from Australian sex ed website Scarlet Teen that takes you on a guided tour of your genitals: The Vagina, Clitoris, Uterus and More. While you may not feel comfortable looking closely at your genitals or touching them in certain ways, the diagrams on this website will really help you to identify and name each of the parts of your anatomy.
 
The next step is to practise using this terminology. You could do this by saying the terms aloud to yourself, or talking to an intimate partner or trusted friend. If you find yourself really unable to say these terms, consider using them in a written explanation of your symptoms which you can then give to your doctor. You may even wish to show this page to someone acting as your advocate, and ask them to speak to the doctor on your behalf.