total pelvic floor repair

Submitted by joycej on December 5, 2004 - 2:50pm
Body: 

Christine's book "Saving Grace" came out 9 months after I had my hyst for rectocele and minor uterine prolapse three years ago. Multiple specialists later, I've been told that I need "total pelvic floor repair." That involves total abdominal surgery and placing mesh between all the pelvic bones. I have learned so much, and others can learn from my experiences--both my mistakes and my research.
Five months ago I visited a world renowned Physiotherapist (that's what they calll physical therapists in Canada) and had an ultrasound to pinpoint which muscles I still had strength in, and pointers on how to learn to reuse them. I have had physical therapy in the states recently from someone who is both a PT in women's pelvic health and a licensed Pilates instructor. I can now vouce that Pilates can work wonders on the core muscles. I also want to warn that someone with prolapse issues should NEVER embark on this regieme without prior guidance from an expert. If the exercises are not done properly, the prolapse can be exacerbated.
Given that warning, I want to share some exersize sheets that the Canadian physiotherapists have on their website. All but the "deep neck flexors" one are appropriate for prolapse issues. What I have found is that you need ALL those core muscles firing--not just the "pelvic floor" muscles. If you just strengthen the floor, then those other muscles can stretch--the fascia along with the--and you end up with a strong floor, but cannot defecate or urinate properly.
Here's the page: http://www.oceanpointept.com/client/exerciseSheets.asp
Good luck to everyone. I have not read a lot on this site yet--but just want to share something that I'm hoping will give me my life back. My story is horrendous--and I don't need to bother elaborating. I'm sure the diagnosis itself helps you understand my plight--and how estatic I am to think that I may be able to delay for a long time--perhaps forever--what the Dr.s think is inevitable.
joyce

Christine

December 6, 2004 - 11:34am

Welcome Joyce!

Thank you so much for sharing this and you would be doing a great service to also post it on www.pelvicfloor.com where I know many women who really need the information will see it.

Intraabdominal pressure must move through the post-hysterectomy pelvis much differently, and I have no idea the implications that would have for positive vs negative response to "crunch" type abdominal exercise.

Wishing you well,

Christine

Frances_1931

December 7, 2004 - 6:06pm

Hi Joyce,

It sounds as if you have had a very difficult situation... hopefully you are or will be better soon. I am also new to this forum and everything so far reinforces my belief that medical science does not always know what is best for women's health issues... so what else is new???

I also live in Canada, in Toronto... and wonder if you could recommend a physiotherapist who does the pelvic floor work. Now that I know such people exist, I am eager to find one and begin work.

regards, Frances

joycej

December 8, 2004 - 4:14pm

Just so you know... I'm not a Canadian. I went all the way up there SPECIFICALLY to be assessed by the marvelous physiotherapist, Diane Lee. Fortunately, in my small town south of the border we've got a physical therapist who not only has her specialty in womans pelvic disorders, but is also a licensed Pilate's instructor.
I'm getting better and better, ever so slowly. Each babystep brings a smile...
jjim

joycej

December 8, 2004 - 4:16pm

Oops--forgot to help you find a referral. I suggest you go to the site I gave you, and look for contact information. I ended up cooresponding with Diane Lee several times before going up to have an assessment. I'm sure anyone in the office there could look in their professional organization files and find folks in Toronto who could be ALMOST as good.
jjim

Christine

December 8, 2004 - 5:13pm

Hi Joyce!

Diane Lee's wonderful book, The Pelvic Girdle: An Approach to the Examination and Treatment of the Lumbo-Pelvic-Hip Region has been very influential to me! I gained much information about the sacroiliac joint and it was one of the resources that gave me the insight to develop the posture.

In her book she says:

"In the braced postion (which I interpreted and describe as a "proud holding) with both the external and internal obliques recruited, most patients will also recruit their rectus abdominis isometrically. This collective contraction should result in a reflex tightening of all of the muscles of the pelvic floor."

I'm so glad she is able to help women post-hysterectomy, but one thing I am so amazed about in pouring over the physical therapy literature and the orthopedic literature is how careful everyone is not to make the slightest mention about what is causing the largest population of low-back sufferers and musculoskeletal dysfunction on the planet!!

Tell her about Wholewoman!

Christine

joycej

December 8, 2004 - 5:42pm

Christine: Go to Diane's website (As I recall, it's www.dianelee.ca.com--or something like that) and read her newest paper on Stress Urinary Incontinence & pelvic load. She gave it in Nov. 2004 in Melbourne. Her e-mail is on her site--I'm sure she'd love a note of support.
What gave me the GREATEST hope, was during my assessment, she let me know that SHE HERSELF was hysterectomized!!! My surgery was an amazing nightmare that went on for two years until finally diagnosed. The last thing I want to do is go under the knife again! Do you know that there is a new edition of The Pelvic Girdle out now? You can also download chapter 5 of that book from her site.
I've sent so many folks to the Oceanpoint physiotherapist site to check out their exercise sheets. What a wonderful service. It has helped me so much to visualize which muscles I'm trying to train. The amazing thing is how it's WORKING. I didn't notice at first, but then after 2 months or so, all of a sudden I realized I was no longer "leaking" urine. Then I realized I no longer needed to hold up my rectum, etc., etc. It won't work for everyone, but if you're desperate focused and doggedly persistant, you've got a better chance. joycej

Christine

December 8, 2004 - 6:57pm

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joycej

December 8, 2004 - 9:04pm

If I'd read your book BEFORE hyst, believe me, I would never have had it. I was not in pain, no heavy bleeding, just felt like "things were falling out." I just did not understand anatomy, but the doc said that "their was so much coming down that the only way to fix it was to remove the uterus & repair the rectocele." Now, I realize what a dumb statement that was! Because I come from a family filled with up to date, ethical medical docs, I just trusted. When I worked up the nerve, 6 months post hyst, to call a physician brother-in-law in another state and told him my symptoms, told him that the surgeon said "it would take a year" to get better that my reactions were "just me" and that my vagina was normal length, even though my husband could only reach half way in, he just about hit the roof and told me to run, not walk to other docs. Unfortunately, I ran into some that were more interested in protecting the surgeon than helping me. I'm on the right track, now though. I think it was "caught" in time, before all the fascia stretched so much that my nerves stopped firing.
Amazing what docs get away with. My experience was the norm for women in the '50's. There is no gyn that has examined me since that doesn't wince when they look.
joycej

fullofgrace

December 8, 2004 - 10:16pm

joyce thank you so much for sharing your story. confirming my commitment to stay whole. :) i am sorry for your experience, but i am glad it seems you have found help & hope with your pt.

Christine

December 9, 2004 - 7:28am

Yet...a quick look at other websites are testiment to the fact that not much has changed since the 50's in this area of women's healthcare! I think we are seeing evidence, though, that several doctors ARE changing their tune and that is music to my ears!!!

Christine

December 9, 2004 - 10:58am

Dear Joyce,

I just finished reading Diane's impressive paper on urinary incontinence. Thank you SO MUCH for the link. I find myself once again scratching my head and wondering why, with this sort of scientific information that Diane referenced:

"Nguyen et al (2000) found that women with uterovaginal prolapse had significantly less lumbar lordosis and a less vertically oriented pelvic inlet than groups without prolapse. This postural change is often seen in patients with stress urinary incontinence as well as in patients with lumbopelvic dysfunction (clinical observation). When the bladder is observed with real-time ultrasound imaging, it can be seen that these strategies cause the bladder to descend (Fig. 3)."

that women have not been taught (before now :-)) how to reinstate the lumbar curve to prevent/treat prolapse!!

Chrisitne

carolb

May 28, 2005 - 6:08am

I have just joined this site and feel as though I am finally finding some answers that make sense! I have a "gut" feeling that having done Pilates exercises quite intensely contributed to my cystocele. I've asked 3 doctors about that and get a blank generic response to the effect that "it just happens." I was probably not doing them correctly or as you say, Joyce, in your warning that "someone with prolapse issues should never embark on this regieme without prior guidance from an expert."--which is what I unknowingly did.

And now I have to deal with it and work on my pelvic floor muscles and posture. The more I read I'm sure I don't want the suggested surgery nor do I want to go the Premarin and kegal exercises route my first gynocologist suggested. Her second suggestion was a hysterectomy to correct the cystocele so of course I looked for another doctor. My second one suggested anterior repair with a sling. Except for this site I feel like I'm wandering in a wasteland as I search for the right doctor.

Something I noticed when the problem first occurred was that in flying back home from a granddaughter visit was that I loved wearing my backpack at the airport because it forced me to stand differently--actually putting my spine in an S curve! Now that I have Christine's book it makes sense. So now to help retrain myself I wear the backpack with a few books in it (not too heavy) while doing things around the house. It really feels good. And I'm doing the exercises.

It really feels good to know there are other women on this web site dealing with similar issues. Thanks everybody! We're going to make it!

Christine

May 28, 2005 - 6:41am

How sweet, Carol!!

Not only are we going to make it, but we're going to chart this territory ourselves - like we could've done a hundred years ago if only we had the Internet :-), give a comprehensive map to the pelvic surgeons, and a set of guidelines to the World Health Organization!

Just to be sure you're getting the posture right...balance something heavy (like a large pot) on your head and your spine will be drawn immediately into its natural shape. You can't do this work without a hollowed lumbar curve and a firm, rounded belly to keep the correct equilibrium.

;-)Christine

BaNa48

June 2, 2005 - 3:22am

Christine I couldn't get anything from the www.oceanpointept,com. I tried many times but get a blank sceen and lock up my computer. Maybe I'll write to them and ask to mail me info if I first send money for postage. Nancy

carolb

June 5, 2005 - 11:07pm

Caz,
I, too, had the goal of a flat stomach! I wasn't doing Pilates in a class, but with a video. I think it was only certain exercises that were bringing on and aggravating my cystocele, definitely not all--and I do want to get back to doing some of the Pilates exercises. It's going to take a little time to work out what's helpful and what's not. I'm seeing improvement using Christine's exercises and posture changes from her book but sometimes get so busy that I'm not doing the exercises as faithfully as I should. Now that the school year is over (I'm a teacher) I should be able to devote more time to it. I've also ordered the video, but it hasn't arrived yet.

This whole business isn't the end of the world, but it's kind of a wakeup call to make some changes in our lifestyles and priorities. Also now I know that when my cystocele seems to be getting worse it can also get better, depending on my activities and posture.

Wishing you and everyone else good health and a positive attitude,
Carolb

caz_789

May 31, 2005 - 5:36am

Hi Carolb,

Regarding the Pilates, I think there are many different levels and variations in the way this is taught. The class I joined 2 and a half years ago was a beginner's class and quickly became quite tough but after 3 months the teacher changed and the new lady insisted on starting from scratch with us. I'm glad she did though it drove some people away! She built up the exercises very slowly and I think we are still not doing the fully blown version of many exercises.

The thing I want to admit to here (I don't know if this accelerated my cyctercele or not) is that dispite my teacher every time stressing that the pulling up of the pelvic floor should be much stronger than the pulling in of the tummy (navel-to-spine) I know that I did not comply. In those days before I really understood the full implications, my prime goal of all exercise was to get-a-flat-stomach! So whilst I did try to 'zip up' my PF as well, it was usually the tummy that I put most effort into. I bet I'm not the only one!

I'm glad you have found this site and wish you good health.
Caz