Some things to know:

• About 380,000 procedures are done annually in the U.S. using surgical mesh.
• Over the past three years, FDA has received over 1,000 reports of complications from the nine surgical mesh manufacturers.
• These complications have included erosion into the bladder, urethra or vagina, pain or even reports of bowel, bladder or blood vessel perforation during insertion of the mesh.
• There are various kinds of mesh - from biologic to synthetic - and different procedures may use differnt amounts of mesh.

 The FDA issued guidelines for physicians, but what I wanted to say to you is that if you are having an operation for prolapse or stress incontinence repair, you may want to ask your doctor a few basic questions:

1. How much mesh is being used?
2. Where is it being placed and how is the incision performed?
3. How many of these procedures have you done and where/how did you get trained?
4. What types of risks are associated with the procedure and what are the potential complications?
5. What warning signs should you look for in the weeks following surgery?

For me, a patient who has had, herself, some complications associated with the gold standard of pelvic surgery involving mesh, I must say that this FDA warning is a good thing.  To me, it reiterates the need to talk to your doctor and highlights the importance of you being an aware consumer.

No procedure is without risk, but to minimize the risk of any surgery, you should have confidence that your doctor does these procedures regularly, is well trained in the products he/she is using and, perhaps in the case of mesh, which is a foreign object being placed in your body, uses just what he/she needs in the situation.  This is not a case for “bigger is better.”

I have also learned as a patient, that you are your own best advocate, so ask questions and keep asking questions until you are comfortable with the answers.  

SD Rehab and Women’s Health Foundation have partnered to bring health to both the women of Nepal and the women of Chicago!  Postural Pilates - Strength and Vitality Throughout Our Lifetime, a one hour fitness class, will be offered August 23rd at 10 a.m. All donations will go towards Women’s Health Foundation’s upcoming humanitarian and medical mission: Secret Shame: Uterine Prolapse Among Women in Nepal. 

Here is a little information on the class that will be offered: Designed by a rehabilitation specialist and pilates instructor with extensive knowledge of the body’s anatomy & natural alignment, this class can only improve your posture and vitality!  This class is appropriate for all levels of fitness and includes the use of foam rollers, resistive bands light weights and Pilates mat exercises to increase your overall flexibility, improve your core strength, and align your spine. Participation will help you to look and feel better throughout your lifetime!

So come out and help improve the lives of Nepalese women and help boost your own health and wellness too!

Postural Pilates - “Strength and Flexibility for a Lifetime”

Where: SD Rehab 1962 North Bissell Street, Chicago, Illinois

When: Saturday, August 23, 2008

Time: 10am-11am

$15.00 Donation

This class is appropriate for all levels of ability. To register, call SD Rehab at 773.477.7599

SD Rehab is sponsoring this class to assist the Women’s Health Foundation in their fundraising efforts. All proceeds from the class will go to the Women’s Health Foundation, a non for profit organization dedicated to the health of women.

Introducing the Total Control Widget:  http://www.totalcontrolprogram.com/widget/

For those of you that are new to widgets, think about those handy icons you can open or download to your desktop that tell you the weather, the time or perhaps track the stock market. 

The Total Control widget, when “hidden” looks discreetly like a line green square button.  When you click on it and open the widget, you will see our Total Control gal, Tilly, standing in front of an old-fashioned elevator.  Click on the elevator and you will be cued to perform 10 pelvic floor lifts, each held for 10 seconds and each followed by an extremely important 10 second rest.

The coolest feature of the widget is the customization.  You can program the widget to open on your desk top up to two times a day - hence your built-in reminder to “Just Do It!”, to quote a famous sports apparel company.  We recommend twice a day, say at 10 & 2 (that would be 10 a.m. & 2 p.m., unless you are a night owl).

One note, the first time you download the widget, you will be instructed to download Yahoo Widgets first.  Don’t be scared, it doesn’t mean your desktop will be littered with other icons - unless you want it to.  We try to bring you cool innovations, but are, of course, a non-profit, so it was more economical for us to build the widget within Yahoo Widgetland. 

Please let us know your thoughts by email our Director of Marketing (and chief widget architect), Molly at molly@womenshealthfoundation.org or reply to this blog.

 So, as always, stay “Fit, Sexy & In Control!”

Yours in pelvic health,

Missy

Dr. Kaelin asked me to come and give two educational sessions and one fitness sessions for the women, of course around their pelvic health and featuring many of the moves, tip and topics from our Total Control program.  By request of the women attending the educational sessions, I ended up doing two fitness sessions after each of the educational sessions and in doing so, had the experience of my lifetime.

It’s funny, I was so nervous before I got to the retreat and I actually (for the first time in my life) had “speaker’s block” when it came to segueing from breast cancer to pelvic health.  I thought, “How could I make what I wanted to share with these ladies – all of whom who had looked at the face of the big “C word” and survived – relevant and important to them?”  Luckily, I posed that question to my husband, Kim, who is an amazing public speaker and himself an ardent “Pelvic Floor Evangelist.”

He said, “You know, at the end of all the breast cancer treatments, these women are still women – they all run the risk of having out of control bladders or falling uteruses from childbirth. “  When I checked into the average age of the participants (60), I realized he was absolutely right and if they were menopausal, they stood a big risk of dealing with issues like incontinence.  A condition, as we know that while it does not kill you, it can ruin your quality of life. 

I also knew that cancer treatments like radiation and chemotherapy wreck havoc on your body – even if they are targeting breast cancer.  Vomiting after radiation can cause stress incontinence.  Radiation can also cause tissues like the vagina to thin, which can lead to painful intercourse.  Chemotherapy drugs do lots of unpleasant things, but for estrogen sensitive cancers, like breast and ovarian, treatments literally turn off estrogen production, which throws a woman right into early menopause, and all the fantastic menopause symptoms (including vaginal dryness, urgency and even stress incontinence).

So, armed with what I knew about these women’s demographics and probable treatment side effects, I did my thing.  The first thing to accomplish, in 90 minutes, was to try and get them excited about their pelvises again.  I did it by talking about how critical the pelvis is to their structure, their sexuality, their continence, their femininity. I shared with them the basics of pelvic anatomy, what can commonly go wrong and what they can do to immediately make a positive impact in their pelvic health and fitness.  We ended with a seated demo of the Pelvic Pyramid muscles which was a hint of the exercises in the fitness sessions following.

In each of the fitness sessions, these beautiful women – all so excited to be learning things that might keep them out of the bathroom every 30 minutes, or help them do a fitness walk without leading, or might help them eventually sleep through the night – went through a mini-Total Control program in a 45 minute session.  I sent them home with their own copies of our Total Control DVD, so they could practice what they’d “learned” at home, as well as a copy of our book, “You Go Girl, But Only When You Want To!”

From their immediate feedback and the emails I have received, I know they enjoyed their learning and their exercises, but here’s what I got out of the experience:

• A deep respect for the resiliency of the human spirit – particularly the spirit of women - in the face of tragedy
• A sense of wonder for how someone can go through so much in their life, yet maintain a wicked (even sick!) sense of humor
• An appreciation for the miracle of our bodies – even if beaten down by cancer, scarred by surgery, radiated or flushed with drugs – it can be beautiful, strong and vibrant on the other side of illness
• A humble gratitude for the ability to share what I knew with them; to be able to teach them a little tip that could make them smile and also change their life for the better, all at the same time

I hope to be able to go to this fantastic event another year.  I hope to work with some of the cancer research and treatment centers in Chicago to bring something like Knowledge, Strength & Grace to the Midwest.  If only we can find a location as spectacular as a wooded YMCA camp on an island in a lake in Southern New Hampshire! 

If you are interested in attending Knowledge, Strength & Grace next year, post a comment with your email and I’ll forward it along to the people in Boston.  If you are interested in something like this in Chicago, let me know! 

An interesting site I found in my research about sexual side effects and coping mechanisms for cancer patients is from the Mayo Clinic:  http://www.mayoclinic.com/health/cancer-treatment/SA00071

Have a wonderful week!

Yours in pelvic health,

Missy

So, I saw a fantastic documentary a few weeks ago called, “In The Family,”by a local Chicago documentary film maker named Joanna Rudnick.  Joanna found out at 31 that she is a carrier of the BRCA-1 genetic mutation which means she has an increased risk of developing breast and ovarian cancer.  (See http://www.labtestsonline.org/understanding/analytes/brca/test.html to learn more about BRCA 1 and the test for it)  The movie shows Joanna’s journey to understand this “condition” and in doing so, she meets some amazing women who have or have had breast or ovarian cancer - some late stage and others who are in remission at the time of filming.

The most powerful moment in the film, to me, came when various women, survivors of breast cancer, showed their bodies to the camera - with all their scars and imperfections.  Some are proud, others look sad, but it was so powerful just seeing these women’s bodies after under going various surgeries and procedures.

What I keep thinking about is how the scars we bear as women show the road maps of our lives; scars from a C-section, even the wrinkles on our face are lines of a journey, lines of wisdom, of sadness, of joy.  These women have unique scars they received from treatment from cancer and it’s incredibly powerful to look at em.  Everyone has scars.  I have scars from my surgeries, you, potentially from yours, or maybe from the bumps and scrapes of life.  Sometimes those scars and lines are hard to bear, hard to look at and sometimes it’s hard to even feel feminine with them.  As I watched the movie, I though, “How do they do that?  How do they feel feminine with all that “stuff” happening to them?” 

I don’t have the answer to the “how” of that; I think it is really hard.  The commitment I’ve made in my life is to help women through my work and through our organization to try and help them do exactly that.  Feel sexy, be powerful and life positively while they struggle wth the challenges of reality, sicknesses, challenges and other bumps and bruises of life.

We do it at WHF through health, fitness & education, all channeled, all starting in the pelvis.  Things like Total Control are not the end all, be all, but they can help change the quality of a woman’s life - and maybe even how she looks at her body.  Maybe what we can do is even help a woman connect back to her true center of power (the pelvis) and, in doing so, she may be a little more apt to really look at herself a bit more positively the next time in the mirror.  Bumps and bruises and scars and all!

Be well,

Missy

p.s. Tell me how you stay feeling feminine, sexy or even “OK” with your body if you have dealt with a major illness……

 It falls apart.

Why is that?

Let me offer up my current theory - to be proven out in future research (I promise you!).  I think we divorce our pelvises as young girls in this culture, the moment we have our periods.  Just think about what we call it:

• Martha
• The “rag”
• The “curse”

It’s all positively so positive, isn’t it?

With that kind of language, what I suggest is that we really stick our pelvis “over there,” on the side, out of body and try to forget about it most of the time (except when the nasty little period thing happens).

When we are disconnected from our pelvis and go through major lifestage changes like pregnancy and menopause without our collective conscious tuned into what’s happening there for our bodies, is it any wonder that bad stuff happens?  I mean, if we were paying attention to our pelvic health and fitness during pregnancy or before, during and after menopause, we would (at a minimum) be doing things like frequent pelvic floor exercises, trying to stay “regular” and watching our intake of bladder irritants, just for example.

But we aren’t.  And many of us are suffering from consequences of being totally out of tune and out of touch with this very important place.

Take heart in knowing you are not alone AND take heart in knowing that there are many, many things you can do to help yourself - like diet and exercise, etc..  See www.womenshealthfoundation.org for just a few tips and topics.

What do you think?  How do you feel about your pelvis?  Do you remember a specific time you decided it was “icky”?  Or, maybe I am wrong and there are some of us out there who aren’t children of the 70’s who were raised with more awareness.  I’d love to hear from you about what that was like! 

Meanwhile…..

Look for my next blog when I talk about the “5 centers” of the pelvis and a paradigm shift that could change the collective pelvic health and fitness of the world!

Before we leave this topic, I want to share with you this great picture from WebMD which shows two common types of pessaries and the proper fitting of one.  Imagine a thick diaphram that literally can lift everything up just enough to restore proper alignment and/or functions.  

Placement of a pessary

The illustration above shows how a pessary should fit. The most common types of pessaries are the Gellhorn and the doughnut. A pessary is used to support areas of pelvic organ prolapse. - Get it!?

 So, a few other cool things in the world of pessaries.  There is a group of researchers funded by the National Institutes of Health called the Pelvic Floor Disorder Network; seven top acedemic institutions funded to develop innovative research studies in female pelvic health.

They have a study (see: http://www.pfdn.org/current/index.html) called Atlas that looks at physically active women with SUI (stress urinary incontinence, or that “laugh, cough, sneeze and you leak” phenomenom) and assigns them to one of three groups:

1. A group that gets a pessary

2. A group that gets 4 sessions with a pelvic floor PT

3. A group that gets both

The research will look at improvement of both symptoms and quality of life for the three groups.

 What I love about this research is that it addresses active women who leak (like me!), but with holistic, less invasive approaches - physical therapy and a device as old as the hills.  Rumor has it Cleopatra had one in her pyramid!

So, that’s all for this week.  Be fit, be active and you have issues, be sure to start asking questions of your healthcare provider.  As one of my favorite docs said, “It is your job to keep asking me questions & keep getting answers until you have none left.”

Have a great St. Patty’s day and remember…

You Go Girl!

 OK, I know you are wondering how I, an incontinence patient, can run…and why would I?

Well, I run because I can and because I love it and because I do my best thinking out there on the path.  It is my spiritual moment and where I get some of my best thoughts and ideas.

 As for the “how”, that is what I want to write about.  So, I run with the help of orthotics - inserts I put in my shoes and one I put in my body.  The orthotics I rely on to run is a uterine support device called a pessary.  That’s a scary name, isn’t it?  Maybe, but the reality is this little “device,” actually it is like a stiff dyaphram, can totally change your life.  Or, let you fully live your life.

 The “it” I was talking to her about is what we do here at WHF; what my life is all about - the quest to help women love their pelvis’s, regain their pelvic health and fitness and really be fit, sexy & in control!  Did I somehow offend her?  Why didn’t she get it?

 I am the Executive Director of the Women’s Health Foundation.  I am also a bladder control patient - my pelvic health is always on my mind.  Because it needs to be!  You can read my story on our website, but just know that I am also a Pelvic Floor Evangelist.  I view every conversation I have as the opportunity to get women thinking about their own pelvic health, mostly because I know we are not embracing our pelvic health like we embrace the rest of our overall health.  When this woman asked me this question, the question I thought most about later was, “How can I be, how can we be here at WHF that will make women like this interested?” 

 This woman represents one of the primary targets for our work - women over 50.  OK, she had never had children, she obstensively did not have issues with bladder control or constipation or sexual dysfunction, but she was at least on the other side of menopause.  Statistically, she is likely to have an upfront and personal experience around her bladder in the very near future and judging from what she told me, she wasn’t doing a thing to potentially prevent that encounter from being a negative one.  She needed to be listening to me; she needed to start working on her pelvic health, and yet she couldn’t even imagine why I would be talking about “…things like this.”  Hmmmmmm!?

I don’t have all the answers yet, but I am thinking about that woman every day.  How can we “seduce” women to want to be excited about their pelvic health?  How can we encourage women to talk about this stuff with their doctors, girlfriends, sisters & daughters when things start to go wrong, before they end up with wildly out of control bladders? 

 Your thoughts would be really helpful.  What words would you use if you were me to talk to someone about her pelvic health?  Clearly not “incontinence,” but maybe it should be all about sex, right?  After all, the pelvic floor muscles, for example, are are muscles of “sexual appreciation,” to quote of our favorite people in this business!  Working them out increases blood flow to the area and that can do wonders for your sex life (that’s, YOURS, not just your partner’s!).

 Let me know if you have any brainstorms and I’ll keep thinking, too and get back to you.

Next time I want to talk about letting the guys in on what’s going on for us “down there…..” 

 Yours in pelvic health,

Missy

When I mentioned my “condition” (blech - that’s an icky word too) to my mother, she told me that this is just something that happens to women when they get older,

“Just deal with it, honey! It’s a part of growing older…”, she sighed.

WHAT?!  You’re telling me that there are 1 in 3 women (yes, it’s true - I looked it up online) that are quietly sneaking pads in and out of their handbags and are making secret prayers that last sneeze didn’t make a dark spot in her pants?! And they’re keeping it a secret?!  We’re WOMEN, for crying out loud! My girlfriends know an embarrassing amount of information on me and I, in turn, have loads on them. As women we share, we laugh, we cry, we are sisters….but for some reason, we are too embarrassed to tell our best girlfriends that we are “leakers.”

Well, I’m not keeping it a secret. I’m telling. I’m sharing. And I’m doing something about this.  I’m taking back control of my life. I’m watching my diet, I’m squeezing before sneezing, and I’m strengthening my pelvic pyramid every chance I can get.  Let’s talk about it, ladies.  It’s time to get the word out.