How can we spread the word?

Body: 

My "success story" is still being written of course, but like many, I found this site at a very scary time in my life. The information here, and especially in Christine's book which I refer to and re-read constantly, enabled me to calm down, understand what was happening to me, and embark upon a plan to control IT so that it didn't control ME. I'm writing this post because I am overwhelmed at the thought that, for each woman who finds this site, there are thousands of others suffering, with the potential for the horrible consequences that could result from the lack of information. POP is a silent epidemic; it's the next big thing that needs to "come out of the closet". Who among us is going to take to the streets or plaster our endorsements all over our Facebooks, as much as we want to? I hope and pray that maybe during my lifetime, I can help just one person as Christine has helped me. I will work on it!

I agree, surviving 60. I am deeply saddened, grieving actually, at the level of silence regarding these issues with which we struggle. We are every bit as disregarded as were victims of childhood sexual assault, soldiers of Vietnam, and the black population in decades past.
Awareness changes so much. I've been thinking how to increase awareness locally where I live. I'm sure that I will come up with an idea. Maybe I'll just post a note at the local market. I haven't figured out yet what it will say.
Daphne11

Bless you both! The stories we hear from women who call in so damaged by surgery and still develop prolapse would break your heart.

Breaking the silence is critical to taking treatment of POP back from the urogynecology industry (and it is an industry). We understand this is not an easy subject to talk about, yet it is critical that your daughters, mothers, sisters, nieces and friends are aware of the condition and understand that it is very manageable without surgery.

What can we do to help? We can design flyers for you to post in stores, we can print cards to pass out, just off the top of my head. Any thoughts you have would be most appreciated and we'll do whatever we can to support your efforts.

Maybe we need a global POP Awareness Week. (Hey, why think small?). Let us know your thoughts. Again, many thanks for your support.

Lanny (Christine's DH)

Lanny - I would absolutely love to have a flyer that I could post in a few strategic spots. If something was created and available for us to download as a .pdf, we could print out our own as needed. Love this idea.

How about 2 different flyers? One for individuals, and another that targets fitness/yoga centers....to explain to them why this is important and why they need to get someone trained, so they can add this to their lineup. I would personally send them to everyplace around here.

I mentioned it to Christine months ago before I got sick. It will be a video. I'll upload it to my private youtube account and give Christine access- from there we can decide if we want to do anything with it.
But I think it could spiral into a series of videos-
My main idea is to give a *face* to prolapse. That face is me. It's Louise. It's Badmirror- it's all of us. It's nurses and computer geeks and stay at home moms. Women with prolapse are athletes, intellectuals, and teachers.
The face of prolapse right now, in the mind of the general public is of my 90 year old grandmother and that simply isn't accurate.
Give me a while- but when I'm done- it will be something I'll be proud to share with the world.

Can't wait to see it, Alemama.

I am trying to prepare materials for our WW teacher-training class (the seven of us meet each week at 7:30 am - my time) but keep getting distracted by the horrific antics of urogynecology. Stay tuned to next month's Village Post!

I think about this a lot and i did print out just something very simple that says " For help and guidance on stabilising, improving and possible reversal of pelvic organ prolaps symptoms without surgery, visit www.WholeWoman.com" with a heading that reads "Pelvic organ prolaps" to put in the public toilets and different places. I havn't thought where yet but i will. I gave one to my Gastro/int who was so greatful and said he would pass it on to the relevant dept.( he is very much against surgery as he sees many post surgery women with problems caused by the surgery. I also gave my Physio a brochure which i printed out from the Whole Womans centre... I told her i only had one and she kindly offered to print out a whole lot and distribute them around. So yes flyers and cards would be most welcome Larry and thankyou. On my next visit to my Physio i plan to offer her a loan of Christine's book.

I think that the video is an exellent idea alemama and i will be the first to share it on my FB status. I'm surprised that there isn't one yet, and am also surprised that Oprah hasn't been involved in all of this. Having said that i appreciate that these things take awhile to get off the ground. Best of luck with the video and it's good to have you back and feeling better alemama!!

I'm so pleased this subject has been brought up now, as I've been thinking along these lines myself for a while now. As I was leaving my last physiotherapy appointment, I walked past a young Mum, with her baby, arriving for her appointment. I thought about it afterwards and realised she probably had a post partum prolapse and was about to be given pelvic floor exercises to do. I felt so sorry afterwards that I didn't speak to her and tell her about Whole Woman.
I don't like to think where I would be now if I hadn't found this site - quite likely on a waiting list for surgery and definitely in terrible mental state - and I would love to spread the word to help others. Can't do technology but would happily distribute flyers. They could be left in so many places where women go - hairdressers, healthclubs, libraries, notice boards in supermarkets, public toilets etc. I was also wondering about womens groups such as the Womens Institute (are they only in the UK?) which can take up causes very powerfully.
Tintagel

I like Mishek's idea about a simple and direct notice that can steer someone to the website. A video is great too, but I know that I, for one, wouldn't post it on my Facebook page....just not ready to announce my condition like that! Maybe some day!

I would really like to be able to spread the word too. Am very interested in the WW teachers training. I thought perhaps I should go back to study and get a degree in something that will help me learn and understand more about the female anatomy. Once you have that bit of paper the professional world seems to take you a bit more seriously.

I have a degree in Health Promotion but I knew next to nothing about prolapse when my journey began.

I read and reread my WW book and various other anatomy books but really need some better visual resources.

I have thought perhaps I could buy a bulk amount of WW books and set up a stand at the markets. Sometimes it is easier to promote and sell something if people can see and feel a product and talk to someone.

I have thought about a flyer for around town and to become a local contact person. I really need to learn more though.

Understanding what has happened to me has been an enormous relief. I suspect that POP is going to become even more prevalent when I look at the lifestyles of children and young women today. Sitting in front of a screen is way too common. I see all the health dollars that is spent on screening "after the fact" eg mammograms (which are free in Australia once you reach 50).
I suspect that the health system would get better value from more preventative approaches but that is my pet soapbox!

Would like to be able to network with other ladies in Australia- it would be nice to sit and chat in person. I would happily travel or if anyone would like to visit me - I live on a bush block in a comfy log cabin with a garden and lots of birds.

Hey Lousie- I have emailed you a few times but haven't heard from you

Hey Surviving60, I agree. I always wonder which 50% of the women I see are prolapse sufferers. I sent an e-mail to the Dr. Oz show asking him to have Christine on his show. He has had lots of "alternative health" practitioners as guests on his shows. I haven't heard a response, but maybe someone on his staff is at least thinking about it. It's wonderful to hear your success story. --keh

Surviving60- you never know, my video may be just so amazing that you couldn't help to share it.
I know I share all kinds of awareness videos. I share skin cancer videos and I don't have skin cancer. I share autism videos and I don't have autism. on and on....
Sharing a video does not have to announce that you also have prolapse, just that you support the women who do and promote a non-surgical management of it :)

Alemama, I totally see your point. I too share all kinds of things on my page. But POP is just a little over the line for my particular group of FB friends, which is small and includes many men and women that I only know through mutual interests; female pelvic health just isn't far enough out of the closet yet. But I do know a few individuals I certainly would share such a video with!

this is a powerful vision alemama and I'm so looking forward to seeing it.
I'm 35 and the people I've shared this with, including health professionals, have had the response of "at YOUR age?!!!?!". so that misconception is rampant.

Very important also is to apply to the State Education department in all states for the WW tecnique/posture to be introduced into the primary schools curriculum. (also private schools) It could perhaps be added to their already existing health and hygiene program. Everybody would benefit from doing the ww posture, even the boys. Training the already employed Health and hygiene teacher wouldn't be too difficult. Teaching the ww posture at a very early age would bring so many benefits.This would prevent future problems and as time goes on there would be hopefully less and less prolapsed women. I like Tintagel's idea of the library and hairdresser. I will start with the Library. Thanks Tintagel for the idea!!

You can have your own little private group of friends on FB, like your own private girls' club, and only share POP things with that group. The blokes won't be any the wiser.

The good thing about Facebook is that you can take a peep at someone's links, and if they are TMI or irrelevant you just don't visit the link again. You can also bury the link to Wholewoman Village deep in your own profile. Anyone going that deep deserves to see what is there!

Gardengirl, I haven't forgotten you. It is great that you still visit. I still think about the big Tour.

Mishek, we should both put flyers in Midland Gate toilets and have a competition to see whose gets found by the other first!

Lanny, are my Bookmarks somewhere in the Village? Perhaps we could put a pile of bookmarks in the Library and invite Members to click on the pile of bookmarks and download a sheet of them? I often keep a ziplock bag with 20 or so in my handbag.

Louise

Good thinking Louise, but i rarely go to Midland. I am planning to put posters in as many places that i go to and Midland is included whenever i can get there. I am going to print the ww website at the bottom of the flyer in tear off strips for those who might not be carrying a pen and paper or a moble phone. and then i will stick one on the inside door of each toilet and also one outside where the basins are. Be good to see how many strips disappear. Bookmarks in a ziplock bag, like that idea!!
Lucky that my pop (rectocele) is so much improved or i wouldn't feel up to this.

No, I actually avoid it like the plague. I think that little game might have a low likelihood of happening. ;-)

I decided to try Louise's great suggestion, and make a specific Facebook friend list for sharing of WW information. I started selecting friends, and when I got to my cousin, I skipped her. Over the years she has had 4 surgeries (cystocele, rectocele, failed mesh sling, finally hysterectomy). She has a host of serious plumbing problems, but I've never heard her relate any of them to her many surgeries. When my own POP became an issue, before I discovered WW and was curious about her surgeries, she seemed reluctant to discuss them, saying only that she didn't think any of it had helped. I knew that she would probably not welcome my helpful Facebook posts!

I then realized that any other friend I might choose to include on my list, might be in a similar situation. All of this just keeps bringing me back to the idea of putting the information out there anonymously, by mailing and posting information strategically. And I will continue to seek out opportunities to discuss it one-on-one with women I know.

I tried to convert some ladies on a UK Hysto site, and got a load of abuse, Some people are just not open minded enough to try the alternatives.

Hi Surviving60 and Apis

I agree that if we stick our heads up they will get shot off by some, whether through ignorance, jealousy, anger, or whatever. It is, as you say, important to be aware that we could be putting info in the face of women who would be better off to pick it up out of choice, rather than have it given to them directly and not respond well.

Nobody who reacts negatively to an initial contact will be receptive.

I try to keep in mind that anyone I speak to about Wholewoman may have had a recent hysterectomy or failed surgeries behind them, or have a loved one in the same position. "Seek first to understand" is a useful motto.

We all know here that managing your own prolapses is not like waving a magic wand. A woman needs to know that it involves long work, and quite major, permanent changes on posture and lifestyle for some; and she needs to come to it herself.

In a way, I think just giving out the URL of the website with a brief description, and relating our own story briefly, ie keeping away from "you could" type statements, allows the woman to ask questions, or do her own research, instead of throwing a metaphorical brick at us.

It is, after all, up to each woman to be responsible for her own wellbeing. It is not up to any of us to give her the holy grail, even if we could. It is her own quest. We can only give them a treasure map. The rest is up to the woman herself.

Louise

I had trouble finding the bookmark but eventually discovered a copy I had saved that Louise sent me ages ago.

So I am gradually getting myself organised to do something a bit proactive about promoting the site. Spoke to my GP today and gave her the bookmark. She sounded interested.

I want to start a support group in the town or just see if there is any interest locally. Am trying to talk with more ladies as I find that when I try to articulate what I have learnt, I get tongue tied.

I am planning on designing a flyer so if anyone has done anything so far, it would be good to know. I have read of interest in flyers.

We have adult education centres in Australia. They can be a good source of running general interest groups. A short information session could be useful perhaps with a bit of powerpoint presentation- need to check with Christine on the use of material.