Connective tissue disorders and pain, finally an answer

[Guest guest]

I had been waiting for months to see a Rheumatologist. I got a call yesterday that they had a cancellation, so I jumped on it. I have been suspicious of a possible connective tissue disorder. I am hypermobile, but even I didn't realize the extent until yesterday. I did gymnastics for years as a kid/teen and all of that came really easy, so I knew I was flexible, but I didn't know it was abnormally so. Fortunately, I do not have

either of the main two CT disorders Ehler's Danlos or Marfan's, but Dr. T. said there are about 100 or so collagen disorders and she is sure I fall somewhere in middle, because she said my range of motion is not normal at all. I left her office feeling like I finally have an answer to as to 'why' so much pain in my pelvis for so long (IC, vulvodynia, PN, uterine prolapse). I'll

probably never know exactly what the genetic component is, but at least I can work from this point forward doing the best I can to help myself. Just out of curiosity, I'd like to ask a question. Can any of you bend forward at the waist with your legs together and knees locked and lay your palms flat on the floor? Please don't force yourself to do this and really you shouldn't stress your joints at all...but does anyone know if they can do that? I'm 36 and can still do it. My hubby, nor my kids can do it, so I don't think it's common. My range of motion is hypermobile throughout the majority of my body. I believe my dad and his dad had this hypermobility as well. I read that hypermobility can lead to nerve compression and it makes so much sense. I've spent my whole life trying to hold my self together (literally)! In hindsight, we now know that I fractured my sacrum and

tore ligaments during the birth of my kids. If I knew then, what I know now, I would have opted for c-sections, at the time, though, I wanted vaginal births and I felt that would be best - but I know differently now. I am going next week for my 3rd MRI (in 2 yrs) and I stressed to Dr. T. to please tell them to check out my sacral nerve roots and ligaments on the right side. I wonder if the ligament damage on that side is compressing the PN and causing the sit pain. You all know how it is, we have to figure everything out for ourselves. I'm going to wait until I have the next MRI before I call my gyn and discuss the hysterectomy. I am nervous, I cannot lie about that...and I know I have to weigh this out carefully. I'm concerned about how my pelvis will hold together with my uterus gone. But I'm also concerned that my uterus will keep coming down until it comes out. I

would love to try a repeat uterine suspension surgery...but not one doc I've seen so far thinks it will work. My ligaments supporting the uterus have been shot, so to speak, for a long time now. Does anyone know of or have a good surgeon that might be updated on something like this? I might try to contact Kim Kenton at Loyola and see what she says. She told me not to have a hysterectomy, but my uterus has come down so much more since I saw her (and it's only been a year).Sorry, I know I'm going on here...but I feel some relief. It's just nice to finally kind of know why I've been in so much pain for so long. Any thoughts or comments, any brainstorming or ideas are appreciated. If any of you are very flexible throughout your body you might want to check into it and the possible connection to your pain. I cannot stress enough to make sure your pelvis is aligned! Find a PT or a

DO or someone and make sure things are structurally where they should be. Alignment is the foundation to good PT! One last thing...if any of you plan to become pregnant and you know you are hypermobile, especially in your SI joints....I'd like to throw out the idea of discussing C-section with your doc to avoid any potential problems. Chelle

[Guest guest]

I can touch my hands on the floor but then I was a dancer. I don't think it means your abnormal I think most people are just incredibly out of shape and out of touch with their bodies including kids. When I was a kid I couldn't do the splits but my sister could because she did gymnastics. But after years of ballet Im very flexable I also do yoga everyday I think it is very healthy to be flexable. Old age and illness is usually assotiated with tightness and stiffness thats why yoga is suppose to keep people young because it keeps the circulation going and keeps you flexable so I think you are lucky.

Subject: Connective tissue disorders and pain, finally an answerTo: vulvardisorders Date: Friday, December 5, 2008, 8:57 PM

I had been waiting for months to see a Rheumatologist. I got a call yesterday that they had a cancellation, so I jumped on it. I have been suspicious of a possible connective tissue disorder. I am hypermobile, but even I didn't realize the extent until yesterday. I did gymnastics for years as a kid/teen and all of that came really easy, so I knew I was flexible, but I didn't know it was abnormally so. Fortunately, I do not have either of the main two CT disorders Ehler's Danlos or Marfan's, but Dr. T. said there are about 100 or so collagen disorders and she is sure I fall somewhere in middle, because she said my range of motion is not normal at all. I left her office feeling like I finally have an answer to as to 'why' so much pain in my pelvis for so long (IC, vulvodynia, PN, uterine prolapse). I'll

probably never know exactly what the genetic component is, but at least I can work from this point forward doing the best I can to help myself. Just out of curiosity, I'd like to ask a question. Can any of you bend forward at the waist with your legs together and knees locked and lay your palms flat on the floor? Please don't force yourself to do this and really you shouldn't stress your joints at all...but does anyone know if they can do that? I'm 36 and can still do it. My hubby, nor my kids can do it, so I don't think it's common. My range of motion is hypermobile throughout the majority of my body. I believe my dad and his dad had this hypermobility as well. I read that hypermobility can lead to nerve compression and it makes so much sense. I've spent my whole life trying to hold my self together (literally)! In hindsight, we now know that I fractured my sacrum and

tore ligaments during the birth of my kids. If I knew then, what I know now, I would have opted for c-sections, at the time, though, I wanted vaginal births and I felt that would be best - but I know differently now. I am going next week for my 3rd MRI (in 2 yrs) and I stressed to Dr. T. to please tell them to check out my sacral nerve roots and ligaments on the right side. I wonder if the ligament damage on that side is compressing the PN and causing the sit pain. You all know how it is, we have to figure everything out for ourselves. I'm going to wait until I have the next MRI before I call my gyn and discuss the hysterectomy. I am nervous, I cannot lie about that...and I know I have to weigh this out carefully. I'm concerned about how my pelvis will hold together with my uterus gone. But I'm also concerned that my uterus will keep coming down until it comes out. I

would love to try a repeat uterine suspension surgery...but not one doc I've seen so far thinks it will work. My ligaments supporting the uterus have been shot, so to speak, for a long time now. Does anyone know of or have a good surgeon that might be updated on something like this? I might try to contact Kim Kenton at Loyola and see what she says. She told me not to have a hysterectomy, but my uterus has come down so much more since I saw her (and it's only been a year).Sorry, I know I'm going on here...but I feel some relief. It's just nice to finally kind of know why I've been in so much pain for so long. Any thoughts or comments, any brainstorming or ideas are appreciated. If any of you are very flexible throughout your body you might want to check into it and the possible connection to your pain. I cannot stress enough to make sure your pelvis is aligned! Find a PT or a

DO or someone and make sure things are structurally where they should be. Alignment is the foundation to good PT! One last thing...if any of you plan to become pregnant and you know you are hypermobile, especially in your SI joints....I' d like to throw out the idea of discussing C-section with your doc to avoid any potential problems. Chelle

[Guest guest]

I certainly understand what you are saying, in that flexibility can be a good thing. But mine is not. Mine led to injury during childbirth and I've really been paying for it. I read that people can teach their bodies to be flexible through dance, gymnastics, etc. But since my collagen is messed up, when I used to stretch my muscles before gymnastics I was actually stretching my joints beyond what they should have been, keep in mind, I've not done gymnastics in 20 yrs (nor any stretching in that length of time) ;-). Flexibility can be a good thing...but when it causes pain - that is where the problems come in. I've had PN for the last two years and for 9 months couldn't even drive my car. The doc in NH would do PNE surgery on me right now, if I would move forward with it, but I'm not. Due to so much pain, I

haven't really been able to exercise at all. But I'm gonna see if I can find a PT who will help me strengthen my muscles in a gentle way. Since you have done ballet and are flexible now yourself, do you know if your pelvis is aligned? Mine will not stay aligned...and when you are out of alignment it's much easier for the nerves to be compressed and for triggers to develop. The first time I was aligned it really helped the vulvar and bladder pain for 1.5 yrs. It might be worth looking into to make sure there isn't a connection with your vulvar pain. Just a thought. Take Care,Chelle

Subject: Connective tissue disorders and pain, finally an answerTo: vulvardisorders Date: Friday, December 5, 2008, 8:57 PM

I had been waiting for months to see a Rheumatologist. I got a call yesterday that they had a cancellation, so I jumped on it. I have been suspicious of a possible connective tissue disorder. I am hypermobile, but even I didn't realize the extent until yesterday. I did gymnastics for years as a kid/teen and all of that came really easy, so I knew I was flexible, but I didn't know it was abnormally so. Fortunately, I do not have either of the main two CT disorders Ehler's Danlos or Marfan's, but Dr. T. said there are about 100 or so collagen disorders and she is sure I fall somewhere in middle, because she said my range of motion is not normal at all. I left her office feeling like I finally have an answer to as to 'why' so much pain in my pelvis for so long (IC, vulvodynia, PN, uterine prolapse). I'll

probably never know exactly what the genetic component is, but at least I can work from this point forward doing the best I can to help myself. Just out of curiosity, I'd like to ask a question. Can any of you bend forward at the waist with your legs together and knees locked and lay your palms flat on the floor? Please don't force yourself to do this and really you shouldn't stress your joints at all...but does anyone know if they can do that? I'm 36 and can still do it. My hubby, nor my kids can do it, so I don't think it's common. My range of motion is hypermobile throughout the majority of my body. I believe my dad and his dad had this hypermobility as well. I read that hypermobility can lead to nerve compression and it makes so much sense. I've spent my whole life trying to hold my self together (literally)! In hindsight, we now know that I fractured my sacrum and

tore ligaments during the birth of my kids. If I knew then, what I know now, I would have opted for c-sections, at the time, though, I wanted vaginal births and I felt that would be best - but I know differently now. I am going next week for my 3rd MRI (in 2 yrs) and I stressed to Dr. T. to please tell them to check out my sacral nerve roots and ligaments on the right side. I wonder if the ligament damage on that side is compressing the PN and causing the sit pain. You all know how it is, we have to figure everything out for ourselves. I'm going to wait until I have the next MRI before I call my gyn and discuss the hysterectomy. I am nervous, I cannot lie about that...and I know I have to weigh this out carefully. I'm concerned about how my pelvis will hold together with my uterus gone. But I'm also concerned that my uterus will keep coming down until it comes out. I

would love to try a repeat uterine suspension surgery...but not one doc I've seen so far thinks it will work. My ligaments supporting the uterus have been shot, so to speak, for a long time now. Does anyone know of or have a good surgeon that might be updated on something like this? I might try to contact Kim Kenton at Loyola and see what she says. She told me not to have a hysterectomy, but my uterus has come down so much more since I saw her (and it's only been a year).Sorry, I know I'm going on here...but I feel some relief. It's just nice to finally kind of know why I've been in so much pain for so long. Any thoughts or comments, any brainstorming or ideas are appreciated. If any of you are very flexible throughout your body you might want to check into it and the possible connection to your pain. I cannot stress enough to make sure your pelvis is aligned! Find a PT or a

DO or someone and make sure things are structurally where they should be. Alignment is the foundation to good PT! One last thing...if any of you plan to become pregnant and you know you are hypermobile, especially in your SI joints....I' d like to throw out the idea of discussing C-section with your doc to avoid any potential problems. Chelle

[Guest guest]

my doctor ordered a rheum panel is this kinda disorder covered with that?

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[Guest guest]

Hi Chelle,

I have been told by my podiatrist that I have loose ligaments. My SI

joints don't stay in place and it seems like the simplest things can

knock them out - rolling over in bed, getting my son in and out of his

car seat. I also had a lumbar fusion a few years ago, because I had a

severe spondylolisthesis (one vertebrae was halfway off the one below

it). I seem to have certain joints that are more mobile than they

should be, like I can bend my thumbs backwards at a right angle. I

have long suspected that my SI joints/back issues are playing a part

in my pelvic pain, so I am glad to hear that there are professionals

out there that agree. From what I understand from my PT, when your SI

joints are dysfunctional, your pelvic floor muscles are working so

hard to keep things stable that they are in a constant state of spasm,

which of course can pinch nerves and lead to all sorts of pain. I

acutally opted for a C-section with my son last year because of my VVS

pain and back pain and I don't regret it for a second. The (possible)

extra healing time was worth it compared to what could have happened.

I am glad you have some answers. It's always a relief to be heard and

understood. I have considered seeing a rheumatologist, but put it

off. You've inspired me to look into it again.

Take care of yourself!

[Guest guest]

This might be of interest to some on this subject. It is long but has some

familiar things in it about dyspareunia, etc., and things that are discussed

here.

http://www.ednf.org/index.php?option=com_content&task=view&id=1310&Itemid=888889\

88

Arline

>

> Subject: Re: Connective tissue disorders and pain, finally an answer

> To: VulvarDisorders

> Date: Saturday, December 6, 2008, 7:25 PM

> Hi Chelle,

>

> I have been told by my podiatrist that I have loose

> ligaments. My SI

> joints don't stay in place and it seems like the

> simplest things can

> knock them out - rolling over in bed, getting my son in and

> out of his

> car seat. I also had a lumbar fusion a few years ago,

> because I had a

> severe spondylolisthesis (one vertebrae was halfway off the

> one below

> it). I seem to have certain joints that are more mobile

> than they

> should be, like I can bend my thumbs backwards at a right

> angle. I

> have long suspected that my SI joints/back issues are

> playing a part

> in my pelvic pain, so I am glad to hear that there are

> professionals

> out there that agree. From what I understand from my PT,

> when your SI

> joints are dysfunctional, your pelvic floor muscles are

> working so

> hard to keep things stable that they are in a constant

> state of spasm,

> which of course can pinch nerves and lead to all sorts of

> pain. I

> acutally opted for a C-section with my son last year

> because of my VVS

> pain and back pain and I don't regret it for a second.

> The (possible)

> extra healing time was worth it compared to what could have

> happened.

>

> I am glad you have some answers. It's always a relief

> to be heard and

> understood. I have considered seeing a rheumatologist, but

> put it

> off. You've inspired me to look into it again.

>

> Take care of yourself!

>

>

>

>

>

> ------------------------------------

>

> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST,

> Thanks for your cooperation! **

>

> ***

[Guest guest]

Thanks, Arline, for that info. I still wonder in the back of my mind if I could have a mild form of EDS. I know I don't show the signs of true EDS. I'm just glad to be getting 'some' answers. Take Care,ChelleDate: Saturday, December 6, 2008, 9:39 PMThis might be of interest to some on this subject. It is long but has somefamiliar things in it about dyspareunia, etc., and things that are discussedhere.http://www.ednf.org/index.php?option=com_content & task=view & id=1310 & Itemid=88888988Arline

[Guest guest]

Hey ,I appreciate your response more than I can put into words. I'm sorry to hear that you have these problems, too. Your description is right on! When our ligaments are lax, our muscles work overtime trying to do the job of the ligaments and that leads to trigger points and pelvic pain. Not to mention the bones being pulled out of normal position. My sacrum ends up higher on the right side and I've had torsion in it, too. I spent all summer going to a D.O. who does muscle energy work. He and another doctor got me aligned again, but it's something I constantly have to keep an eye on. I so wish I would have had c-sections...but regardless, I'm glad I had my boys! ;-) If you have a primary doc, or one your really like, you could probably get a

referral to a Rheumatologist and see if you can figure anything out. You could also try to work with a PT. Just some thoughts...Take Care,ChelleDate: Saturday, December 6, 2008, 7:25 PMHi Chelle,I have been told by my podiatrist that I have loose ligaments. My SIjoints don't stay in place and it seems like the simplest things canknock them out - rolling over in bed, getting my son in and out of hiscar seat. I also had a lumbar fusion a few years ago, because I had asevere spondylolisthesis (one vertebrae was halfway off the one belowit). I seem to have certain joints that are more mobile than theyshould be, like I can bend my thumbs backwards at a right angle. Ihave long suspected that my SI joints/back issues are playing a partin my pelvic pain, so I am glad to hear that there are professionalsout there that agree. From what I understand from my PT, when your SIjoints are dysfunctional, your pelvic floor muscles are

working sohard to keep things stable that they are in a constant state of spasm,which of course can pinch nerves and lead to all sorts of pain. Iacutally opted for a C-section with my son last year because of my VVSpain and back pain and I don't regret it for a second. The (possible)extra healing time was worth it compared to what could have happened. I am glad you have some answers. It's always a relief to be heard andunderstood. I have considered seeing a rheumatologist, but put itoff. You've inspired me to look into it again.

[Guest guest]

I don't think there are specific blood tests for connective tissue disorders, because there appears to be many collagen disorders. I do believe the rheum panel tests can show inflammation markers and probably help with a clinical diagnosis, if there is one. My C-reactive protein levels were twice what they should be, when tested back over the summer. Dr. Triplett did a repeat test and ran some others, too. I'll find out more when I go back next month. ChelleDate: Saturday, December 6, 2008, 10:45 PM

my doctor ordered a rheum panel is this kinda disorder covered with that?

[Guest guest]

Arline,

I know you are big into testing for gluten etc. Is it necessary to use the company that did your testing or could a local doctor who deals with allergies test for gluten and wheat sensitivities?? What kind of doctor would I see locally. I can't afford to spend alot of $$ right now. Was hoping to go to doc covered under insurance for a change!

CMake your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

I think that the PT approach may help some people but for myself I have general inflammitory problems and environmental sensitivities from the top of my head to the bottom of my feet that aren't just about vulvodynia it seems to affect my skin allover and now I sometimes get lower abdominal discomfort that is due to just inflammation with no cause. I couldn't excercise for a long time also because for a long time I had severe vulvodynia so I now how frusterating that can be especially if you were once very active but I am just flexible wether I stretch or not, I think once you have been active your body never really goes back to being stiff how most people are normally. I am looking nowadays into working on replacing the good bacteria into my system with some really good human derived bacteria and lately I have been using their vaginal suppositories and have

noticed lately no discomfort so we will see. I can't help thinking that vulvodynia and I.C have something to do with antibiotic use.

From: Chelle <elliottmag (AT) yahoo (DOT) com>Subject: Connective tissue disorders and pain, finally an answerTo: vulvardisorders@ yahoogroups. comDate: Friday, December 5, 2008, 8:57 PM

I had been waiting for months to see a Rheumatologist. I got a call yesterday that they had a cancellation, so I jumped on it. I have been suspicious of a possible connective tissue disorder. I am hypermobile, but even I didn't realize the extent until yesterday. I did gymnastics for years as a kid/teen and all of that came really easy, so I knew I was flexible, but I didn't know it was abnormally so. Fortunately, I do not have either of the main two CT disorders Ehler's Danlos or Marfan's, but Dr. T. said there are about 100 or so collagen disorders and she is sure I fall somewhere in middle, because she said my range of motion is not normal at all. I left her office feeling like I finally have an answer to as to 'why' so much pain in my pelvis for so long (IC, vulvodynia, PN, uterine prolapse). I'll

probably never know exactly what the genetic component is, but at least I can work from this point forward doing the best I can to help myself. Just out of curiosity, I'd like to ask a question. Can any of you bend forward at the waist with your legs together and knees locked and lay your palms flat on the floor? Please don't force yourself to do this and really you shouldn't stress your joints at all...but does anyone know if they can do that? I'm 36 and can still do it. My hubby, nor my kids can do it, so I don't think it's common. My range of motion is hypermobile throughout the majority of my body. I believe my dad and his dad had this hypermobility as well. I read that hypermobility can lead to nerve compression and it makes so much sense. I've spent my whole life trying to hold my self together (literally)! In hindsight, we now know that I fractured my sacrum and

tore ligaments during the birth of my kids. If I knew then, what I know now, I would have opted for c-sections, at the time, though, I wanted vaginal births and I felt that would be best - but I know differently now. I am going next week for my 3rd MRI (in 2 yrs) and I stressed to Dr. T. to please tell them to check out my sacral nerve roots and ligaments on the right side. I wonder if the ligament damage on that side is compressing the PN and causing the sit pain. You all know how it is, we have to figure everything out for ourselves. I'm going to wait until I have the next MRI before I call my gyn and discuss the hysterectomy. I am nervous, I cannot lie about that...and I know I have to weigh this out carefully. I'm concerned about how my pelvis will hold together with my uterus gone. But I'm also concerned that my uterus will keep coming down until it comes out. I

would love to try a repeat uterine suspension surgery...but not one doc I've seen so far thinks it will work. My ligaments supporting the uterus have been shot, so to speak, for a long time now. Does anyone know of or have a good surgeon that might be updated on something like this? I might try to contact Kim Kenton at Loyola and see what she says. She told me not to have a hysterectomy, but my uterus has come down so much more since I saw her (and it's only been a year).Sorry, I know I'm going on here...but I feel some relief. It's just nice to finally kind of know why I've been in so much pain for so long. Any thoughts or comments, any brainstorming or ideas are appreciated. If any of you are very flexible throughout your body you might want to check into it and the possible connection to your pain. I cannot stress enough to make sure your pelvis is aligned! Find a PT or a

DO or someone and make sure things are structurally where they should be. Alignment is the foundation to good PT! One last thing...if any of you plan to become pregnant and you know you are hypermobile, especially in your SI joints....I' d like to throw out the idea of discussing C-section with your doc to avoid any potential problems. Chelle

[Guest guest]

Carolyn, if you are asking me (not sure) I think I read that this doesn't have an accurate way of diagnosis but they conclude from the symptoms. Don't really know. This is another "syndrome" that they put a name on and as far as I am concerned that doesn't mean a whole lot but it does mean to me they once again don't know much. Even this has a cause which nobody much looks for and that is a terrible injustice to people. If one has so many symptoms and they attempt to medicate it it must be hard to know where to start first.

Oh well. I don't know but hope you can get better.

Arline

Subject: Re: Re: Connective tissue disorders and pain, finally an answerTo: VulvarDisorders Date: Saturday, December 6, 2008, 10:45 PM

my doctor ordered a rheum panel is this kinda disorder covered with that?

C

Make your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

thanks for the info Arline

CarolMake your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

Hi Carolyn,

 

The only thing that would be hurt if you went to the local gastro and he blood

tested you for Celiac would be--if it is negative you would be inclined to

believe it and so would think you could eat gluten for the rest of your life.

They are different tests.

The blood tests only test for what they call Celiac which is end stage

destruction of the small intestine. Other kinds of gluten sensitivity don't do

the damage that can be discerned in blood tests but do other damage to the

nervous system, tissue, other organs, etc. so one can be producing antibodies

that are absolutely tearing up the body and yet the blood tests can't diagnose

it.

Allergists give allergy tests. Gluten Sensitivity and Celiac Disease aren't

allergies so while one may produce a test that is positive for an allergy to

gluten, it does only that and doesn't diagnose the Autoimmune Disease which is

tearing up your body.

I spent my whole life being tested for Celiac Disease and by the the foremost

experts in the country. Finally I realized what was making me sick and attempted

to be tested again to the same result. I finally knew what was making me sick

and my reading and participating in online support groups made me understand

that Enterolab has the only sensible and honest test for the sicknesses of all

the Gluten Sensitivity conditions. Gluten Sensitivity is the primary disease and

Celiac is only one small part of it in my opinion (and others).

You would save yourself money in the long run to at least take the gluten

sensitivity test at Enterolab. It will be an honest result and will save you all

the copays ;O). Don't bother with allergists cuz they don't give the right

tests. Don't bother with gastros because their tests are inaccurate and

inadequate. Just my opinion. I think the Gluten Sensitivity test at Enterolab

test will be around $120 and the includes postage.

I guess that is the best I can tell you. I wouldn't waste my time with what the

gastros will put you through at this point. A simple stool test will tell you

what you need to know.

Best,

Arline

Subject: Re: Re: Connective tissue disorders and pain, finally an answer

To: VulvarDisorders

Date: Sunday, December 7, 2008, 1:18 PM

Arline,

 

I know you are big into testing for gluten etc.  Is it necessary to use the

company that did your testing or could a local doctor who deals with allergies

test for gluten and wheat sensitivities?? What kind of doctor would I see

locally.  I can't afford to spend alot of $$ right now.  Was hoping to go to doc

covered under insurance for a change!

 

C

Make your life easier with all your friends, email, and favorite sites in one

place. Try it now.

[Guest guest]

I agree with the antibiotic link, especically since my vulvodynia flares were provoked both times after antibiotic use, Macrobid and Amoxycillan. Both times I got yeast infections from the use of antibiotics, thus leaving my pelvic floor muscles tense from the pain of the yeast infections. I try to eat 1 yogurt a day and drink one glass of cranberry juice.

What is the human derived good bacteria that baukti baukti wrote about? Just curious.

From: Chelle <elliottmag (AT) yahoo (DOT) com>Subject: Connective tissue disorders and pain, finally an answerTo: vulvardisorders@ yahoogroups. comDate: Friday, December 5, 2008, 8:57 PM

I had been waiting for months to see a Rheumatologist. I got a call yesterday that they had a cancellation, so I jumped on it. I have been suspicious of a possible connective tissue disorder. I am hypermobile, but even I didn't realize the extent until yesterday. I did gymnastics for years as a kid/teen and all of that came really easy, so I knew I was flexible, but I didn't know it was abnormally so. Fortunately, I do not have either of the main two CT disorders Ehler's Danlos or Marfan's, but Dr. T. said there are about 100 or so collagen disorders and she is sure I fall somewhere in middle, because she said my range of motion is not normal at all. I left her office feeling like I finally have an answer to as to 'why' so much pain in my pelvis for so long (IC, vulvodynia, PN, uterine prolapse). I'll

probably never know exactly what the genetic component is, but at least I can work from this point forward doing the best I can to help myself. Just out of curiosity, I'd like to ask a question. Can any of you bend forward at the waist with your legs together and knees locked and lay your palms flat on the floor? Please don't force yourself to do this and really you shouldn't stress your joints at all...but does anyone know if they can do that? I'm 36 and can still do it. My hubby, nor my kids can do it, so I don't think it's common. My range of motion is hypermobile throughout the majority of my body. I believe my dad and his dad had this hypermobility as well. I read that hypermobility can lead to nerve compression and it makes so much sense. I've spent my whole life trying to hold my self together (literally)! In hindsight, we now know that I fractured my sacrum and

tore ligaments during the birth of my kids. If I knew then, what I know now, I would have opted for c-sections, at the time, though, I wanted vaginal births and I felt that would be best - but I know differently now. I am going next week for my 3rd MRI (in 2 yrs) and I stressed to Dr. T. to please tell them to check out my sacral nerve roots and ligaments on the right side. I wonder if the ligament damage on that side is compressing the PN and causing the sit pain. You all know how it is, we have to figure everything out for ourselves. I'm going to wait until I have the next MRI before I call my gyn and discuss the hysterectomy. I am nervous, I cannot lie about that...and I know I have to weigh this out carefully. I'm concerned about how my pelvis will hold together with my uterus gone. But I'm also concerned that my uterus will keep coming down until it comes out. I

would love to try a repeat uterine suspension surgery...but not one doc I've seen so far thinks it will work. My ligaments supporting the uterus have been shot, so to speak, for a long time now. Does anyone know of or have a good surgeon that might be updated on something like this? I might try to contact Kim Kenton at Loyola and see what she says. She told me not to have a hysterectomy, but my uterus has come down so much more since I saw her (and it's only been a year).Sorry, I know I'm going on here...but I feel some relief. It's just nice to finally kind of know why I've been in so much pain for so long. Any thoughts or comments, any brainstorming or ideas are appreciated. If any of you are very flexible throughout your body you might want to check into it and the possible connection to your pain. I cannot stress enough to make sure your pelvis is aligned! Find a PT or a

DO or someone and make sure things are structurally where they should be. Alignment is the foundation to good PT! One last thing...if any of you plan to become pregnant and you know you are hypermobile, especially in your SI joints....I' d like to throw out the idea of discussing C-section with your doc to avoid any potential problems. Chelle

[Guest guest]

I agree with your saying, because I was a dancer since the age of four and quit when I was sixteen years old. I used to be very flexible, now I am very out of shape, even though my weight is normal.

Connective tissue disorders and pain, finally an answer

To: vulvardisorders

Date: Friday, December 5, 2008, 8:57 PM

I had been waiting for months to see a Rheumatologist. I got a call yesterday that they had a cancellation, so I jumped on it.

I have been suspicious of a possible connective tissue disorder. I am hypermobile, but even I didn't realize the extent until yesterday. I did gymnastics for years as a kid/teen and all of that came really easy, so I knew I was flexible, but I didn't know it was abnormally so. Fortunately, I do not have either of the main two CT disorders Ehler's Danlos or Marfan's, but Dr. T. said there are about 100 or so collagen disorders and she is sure I fall somewhere in middle, because she said my range of motion is not normal at all.

I left her office feeling like I finally have an answer to as to 'why' so much pain in my pelvis for so long (IC, vulvodynia, PN, uterine prolapse). I'll probably never know exactly what the genetic component is, but at least I can work from this point forward doing the best I can to help myself.

Just out of curiosity, I'd like to ask a question. Can any of you bend forward at the waist with your legs together and knees locked and lay your palms flat on the floor? Please don't force yourself to do this and really you shouldn't stress your joints at all...but does anyone know if they can do that? I'm 36 and can still do it. My hubby, nor my kids can do it, so I don't think it's common.

My range of motion is hypermobile throughout the majority of my body. I believe my dad and his dad had this hypermobility as well.

I read that hypermobility can lead to nerve compression and it makes so much sense. I've spent my whole life trying to hold my self together (literally)!

In hindsight, we now know that I fractured my sacrum and tore ligaments during the birth of my kids. If I knew then, what I know now, I would have opted for c-sections, at the time, though, I wanted vaginal births and I felt that would be best - but I know differently now.

I am going next week for my 3rd MRI (in 2 yrs) and I stressed to Dr. T. to please tell them to check out my sacral nerve roots and ligaments on the right side. I wonder if the ligament damage on that side is compressing the PN and causing the sit pain. You all know how it is, we have to figure everything out for ourselves.

I'm going to wait until I have the next MRI before I call my gyn and discuss the hysterectomy. I am nervous, I cannot lie about that...and I know I have to weigh this out carefully. I'm concerned about how my pelvis will hold together with my uterus gone. But I'm also concerned that my uterus will keep coming down until it comes out.

I would love to try a repeat uterine suspension surgery...but not one doc I've seen so far thinks it will work. My ligaments supporting the uterus have been shot, so to speak, for a long time now. Does anyone know of or have a good surgeon that might be updated on something like this? I might try to contact Kim Kenton at Loyola and see what she says. She told me not to have a hysterectomy, but my uterus has come down so much more since I saw her (and it's only been a year).

Sorry, I know I'm going on here...but I feel some relief. It's just nice to finally kind of know why I've been in so much pain for so long.

Any thoughts or comments, any brainstorming or ideas are appreciated. If any of you are very flexible throughout your body you might want to check into it and the possible connection to your pain.

I cannot stress enough to make sure your pelvis is aligned! Find a PT or a DO or someone and make sure things are structurally where they should be. Alignment is the foundation to good PT!

One last thing...if any of you plan to become pregnant and you know you are hypermobile, especially in your SI joints....I' d like to throw out the idea of discussing C-section with your doc to avoid any potential problems.

Chelle

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