Ehlers Danlos syndrome with relation to prolapse

Body: 

I was visiting with a friend who is an OB/GYN lamenting my symptomatic rectocele and belief that I have uterine and bladder prolapse as well when she asked if I'd ever been tested for Ehlers-Danlos syndrome. I'd never heard of it so she took my hand and bent my fingers back, pushed my thumb down to my forearm. Then she had me extend my arms and bend my knees back. All of my joints are hypermobile. I've known this since I was a child. I always thought it cool that I could pull my leg up and tuck my foot onto my waist and then hop on the other foot. Also cool that my fingers almost "flap" due to loose joints at the first knuckle. She stated that she does the thumb to forearm test on each of her patients and if they are able to touch their forearm with their thumb she recommends a c-section. Basically with this syndrome the body does not produce collagen as it should allowing for lax connections in the body. Fast forward to today and with the little research I've done on this on the internet it seems this also predisposes one to prolapse. Has anyone else heard of this/dealt with it?

Just one more thing that could have/should have been identified by my useless OB.

Hi Nikki - good to hear from you. We've talked about connective tissue disorders such as Ehlers-Danlos a number of times.

While I believe it is true that many of us have weaker connective tissue than if we were living in pristine areas of the world and on traditional diets, still it does not account for the lion's share of prolapse. And to base a decision such as c-section on such insignificant "data" is irresponsible. I have knees that hyperextend, could bend my thumbs all the way backward to touch my forearms, and do the Chinese splits when I was young. Yet even after two big episiotomies never had an inkling of prolapse until it was surgically induced in my forties.

The true genetic connective tissue diseases are usually quite serious, affecting the valves of the heart, connective tissues of the eyes, etc. These people have a multitude of problems, not the least of which giving birth.

I say phooey to this often-drawn relationship between prolapse and connective tissue disease, even though in many of us the health of our connective tissue could be improved through an anti-inflammatory diet and adequate sunshine.

Christine

This week I think I mentioned that we have talked here about connective tissue disorders and genetics and prolapse and that those talks seem inconclusive. Christine, it seems you are very firmly not a believer of connective tissue disorders as a 'cause' for prolapse.
Not sure what I think.
I know that genetics are simply amazing. I'd like to talk some more about this sometime when there is time for it.
Here is an outdated statistic but I think the trend still holds that more black women than white woman undergo hysterectomy. Yet it seems that white women are statistically more likely to have prolapse. How can this be? These women are missing 'the hub of the wheel' and still have less prolapse.
,( Black women still have higher hysterectomy rates than White women. Researchers used a subset of the Coronary Artery Risk Development Young Adults Study (CARDIA), which examines risk factors for heart disease, to analyze data from 1,863 Black and White women from 2000-02. Three-quarters (78%) of the women undergoing hysterectomy were Black, 22% were White. )
Christine, I know anthropology is a deep interest of yours (or at least has been in the past), how can you discount the very strong physical and physiological differences in race?
In the past you have said that we are more alike than we are different. I understand this in a way. but goodness- couldn't a subtle difference make a huge change in stability?
I know in school we used different equations for bone density among different populations (Asian, Caucasian, African American to name a few). and I also know that forensic scientists can mark these sorts of differences as well.
Curious about these thoughts- though I know how busy you are- maybe others will chime in- could be an interesting discussion....

Christine: Thank you so much for your quick response. I remember the talk of the correlation between connective tissue disorder and prolapse, but didn't remember the Ehlers-Danlos syndrome (EDS) being mentioned. I did a quick forum search before I posted on "Ehlers Danlos" and nothing popped up. This really helps me know that those discussions I remember reading on here about connective tissue disorder also refer to EDS. I read so much more on here than I write. I spent the day researching EDS and am so very thankful the symptoms you brought up - heart, blood vessels, etc. I do not seem to have. While I'm not sure if there is a connection between such a disorder and prolapse there is nothing I can do to change my genetics. I will continue with my anti-inflamatory diet and following the wise path you so patiently continue to lead me and all of us down. And, I'll keep my self-labeled "freak show joints" to myself. :-)

I will also say that my life is filled with OB/GYNS of all sorts (due to my husband being a general surgeon) and I never fail to fill their ears with my thoughts (directly learned from you) on the issue of prolapse. Two female OB's heard about it from me this weekend and one's response was scary to me and the other was quite open to hearing what I had to say.

On another note a friend who is 35 had a bladder sling, hysterectomy and some other repairs (she doesn't even know all what was done) about 2 months ago. Due to serious problems she just had it all redone by a urogynecologist and now 2 weeks later she is still having to self-cath, and is still bleeding. The self-catherization seems to have no end in sight. I know we all hear the horror stories of surgery and I'm just throwing this out there to fortify anyone's resolve who is possibly wavering. Scary, scary stuff.

Hugs,
Nikki

I only have a mo', but how about wrapping your brains around this: Yes, it has been observed for at least a century that prolapse is generally a white woman's disease - not that it doesn't affect all races! We know why women in traditional cultures prolapse less - which was demonstrated in those two studies from China that I cite in the book.

However...researchers measured hundreds of different female pelvises from a huge skeletal collection housed somewhere in Chicago: 1/2 African American and 1/2 Caucasian. The pelves of white women were significantly wider in the back (or upper) half of the pelvic outlet - between tailbone and ischial spines.

I cannot believe hysterectomized black women do not have the same issues as white women. But it does seem that black skin is knit together more tightly. I do think we have less firm connective tissue - but not pathologically so in the sense of a true genetic break that would affect all the connective tissue of the body.

Have a great day...my little granddaughter's first ballet recital is Friday and today I will take her to her dress rehearsal while dd goes to herb class.

Hugs all around,

Christine

I started to reply to this so many times and keep getting interrupted by the kids. so trying again.
first, *if* you have a problem with collagen production, why is it safer to cut into abdominal muscle than to birth vaginally? I'd think a c/section would be pretty risky in that case.

I also believe that there are racial/genetic differences between us, from my education and experience as a physical therapist, we can see distinct variations in resting muscle tone between asians, caucasions and blacks. we see all the time that people of this or that genetic heritage are more or less predisposed to one thing or the other. I'm not sure that a woman's tone or collagen level can really indicate whether or not she will develop a prolapse or indicate that she is a good candidate for elective c/s.
we all have our physical weak-links, mine, for example is low muscle tone and ligamentous laxity. I think that probably is more a cause of my poor (preWW of course!) posture which in turn allowed the prolapse to develop.
and if we're talking about racial similarities/differences, I see big differences in how women of various races tend to hold their bodies. cultural, maybe?
so many variables.