Re: Info desperately needed please!!!! please reply someone

[Guest guest]

Hi everyone, this is Helen C from South Oz. I have asked this before and

only had one reply. Thanks Judy from Atlanta. I have a lot of problems with my

pelvic organs. I have a part prolapse bladder, looks like half of it is large

diverticula, also urgency, frequency and stress incontinence. A huge

rectocele which is prolapsing and problems with my large bowel which will

probably

need repairing also. Does anyone know where I can get some straight forward

information regarding surgery in this area suitable to give to a Gynaecologist?

There are no Doctors who know or want to know anything about EDS here in

Adelaide. I have left getting theses repairs done for too long and I am

concerned

that whoever does the surgery might not take my EDS into consideration. So

please where can I get information to send to a gynaecologist????

I also have dreadful pain in my back and am now getting rt side sciatica. I

feel like I have a saw inbetween the lumbar and sacral which is very painful

most of the time. I hurt after just standing for about 5 mins. The pain is

getting almost unbearable. I also feel like I have an icepick! sticking into my

backside and if I make a wrong move it sends electric shocks down my rt leg.

Sometimes when I am just standing parts of both legs go numb. I have woken

up with a numb right leg. I have an appointment to see a public neurosurgeon

on the 26th March and hopefully he will order a MRI. The problem is should I

deal with my back first or go for the repair jobs. I am worried as to the pain

in my back after the repair job. Has anyone had a laminectomy (fusing the

vertebrae)? Was it successful? What should I do??????? Please help, I am

desperate. Has anyone else had these problems? Do you think they are due to

the

EDS? I most certainly do.

Desperately awaiting your answers.

Gentle Hugs,

Helen C,

South Oz

[Guest guest]

Hi everyone, this is Helen C from South Oz. I have asked this before and

only had one reply. Thanks Judy from Atlanta. I have a lot of problems with my

pelvic organs. I have a part prolapse bladder, looks like half of it is large

diverticula, also urgency, frequency and stress incontinence. A huge

rectocele which is prolapsing and problems with my large bowel which will

probably

need repairing also. Does anyone know where I can get some straight forward

information regarding surgery in this area suitable to give to a Gynaecologist?

There are no Doctors who know or want to know anything about EDS here in

Adelaide. I have left getting theses repairs done for too long and I am

concerned

that whoever does the surgery might not take my EDS into consideration. So

please where can I get information to send to a gynaecologist????

I also have dreadful pain in my back and am now getting rt side sciatica. I

feel like I have a saw inbetween the lumbar and sacral which is very painful

most of the time. I hurt after just standing for about 5 mins. The pain is

getting almost unbearable. I also feel like I have an icepick! sticking into my

backside and if I make a wrong move it sends electric shocks down my rt leg.

Sometimes when I am just standing parts of both legs go numb. I have woken

up with a numb right leg. I have an appointment to see a public neurosurgeon

on the 26th March and hopefully he will order a MRI. The problem is should I

deal with my back first or go for the repair jobs. I am worried as to the pain

in my back after the repair job. Has anyone had a laminectomy (fusing the

vertebrae)? Was it successful? What should I do??????? Please help, I am

desperate. Has anyone else had these problems? Do you think they are due to

the

EDS? I most certainly do.

Desperately awaiting your answers.

Gentle Hugs,

Helen C,

South Oz

[Guest guest]

I have a lot of problems with my pelvic organs. I have a part

prolapse bladder ... also urgency, frequency and stress

incontinence...I also have dreadful pain in my back and am now

getting rt side sciatica. I feel like I have a saw in between the

lumbar and sacral which is very painful most of the time. I hurt

after just standing for about 5 mins. The pain is getting almost

unbearable. I also feel like I have an icepick! sticking into my

backside and if I make a wrong move it sends electric shocks down my

rt leg. Sometimes when I am just standing parts of both legs go

numb. I have woken up with a numb right leg.

The problem is should I deal with my back first or go for the repair

jobs.

------------------------

Helen -

I did a quick internet search. There is a PT in Adelaide trained in

both Cranialsacral Therapy and Visceral Manipulation. He has had

levels 1 and 2 CST, Somato-emotional Release 1, levels 1 and 2 VM,

and also level 1 Mechanical Link. As info, ML focuses on the

fascial system and fits very nicely with the other two. His name is

Simon Cabot, phone number 011 61 88 361 3472. His listing doesn't

have a Practitioner Profile so I can't tell you anything more about

him.

I have not yet taken any training myself in Visceral Manipulation (I

will take my first class in it in April), but what I know about it

is that it very gently works with the various ligamentous

attachments of the visceral organs. Prolapse and stress

incontinence issues are two of the things it is useful in treating.

Your back issue sounds primarily like sciatic nerve impingement,

quite probably involving the Piriformis muscle in the buttock. This

could definitely cause the pains in your backside and the numbness

down the leg. This can very easily and quickly be tested with what

is known as the " straight leg test. "

As for your lumbar-sacral pain - get rid of the saw. Sorry, I

couldn't resist. Actually, I can think of a couple of possibilities

on it. If the pain is predominantly on the one side, you might have

a jammed SI joint. It could also be a pelvic tilt causing pressure.

Your question was whether you should address the back pain or

internal organ surgery first. My recommendation is that you consider

CST and VM first. Both therapies are very gentle. If fascial

restrictions or slight structural misalignments are involved in your

case, these might be able to address the problems without having to

resort to surgery at all. Just a suggestion for you to consider.

[Guest guest]

I have a lot of problems with my pelvic organs. I have a part

prolapse bladder ... also urgency, frequency and stress

incontinence...I also have dreadful pain in my back and am now

getting rt side sciatica. I feel like I have a saw in between the

lumbar and sacral which is very painful most of the time. I hurt

after just standing for about 5 mins. The pain is getting almost

unbearable. I also feel like I have an icepick! sticking into my

backside and if I make a wrong move it sends electric shocks down my

rt leg. Sometimes when I am just standing parts of both legs go

numb. I have woken up with a numb right leg.

The problem is should I deal with my back first or go for the repair

jobs.

------------------------

Helen -

I did a quick internet search. There is a PT in Adelaide trained in

both Cranialsacral Therapy and Visceral Manipulation. He has had

levels 1 and 2 CST, Somato-emotional Release 1, levels 1 and 2 VM,

and also level 1 Mechanical Link. As info, ML focuses on the

fascial system and fits very nicely with the other two. His name is

Simon Cabot, phone number 011 61 88 361 3472. His listing doesn't

have a Practitioner Profile so I can't tell you anything more about

him.

I have not yet taken any training myself in Visceral Manipulation (I

will take my first class in it in April), but what I know about it

is that it very gently works with the various ligamentous

attachments of the visceral organs. Prolapse and stress

incontinence issues are two of the things it is useful in treating.

Your back issue sounds primarily like sciatic nerve impingement,

quite probably involving the Piriformis muscle in the buttock. This

could definitely cause the pains in your backside and the numbness

down the leg. This can very easily and quickly be tested with what

is known as the " straight leg test. "

As for your lumbar-sacral pain - get rid of the saw. Sorry, I

couldn't resist. Actually, I can think of a couple of possibilities

on it. If the pain is predominantly on the one side, you might have

a jammed SI joint. It could also be a pelvic tilt causing pressure.

Your question was whether you should address the back pain or

internal organ surgery first. My recommendation is that you consider

CST and VM first. Both therapies are very gentle. If fascial

restrictions or slight structural misalignments are involved in your

case, these might be able to address the problems without having to

resort to surgery at all. Just a suggestion for you to consider.

[Guest guest]

Hello Helen C

I was to the point that they were going to do surgery. Thankfully my OBGYN

referred me to a woman who did visceral MFR on me. (Mike can probably tell

you better then I what that is and how it is done.) Briefly they go in

vaginally and released my hip flexors and it relaxed the pelvic organs.

Also she released the urethera and it rid me of a constant cycle of being

cathetered (sp) which would only retraumatise my pelvic muscles.

Having said that though -- I still find myself in exactly the same

predictiment in my back and spine that you are. Like you it felt like an

icepick. Docs are talking about doing a 'medial nerve block' or something

like that. I feel really uncomfortable with that procedure as I feel they

have not truly accessed the condition of my spine. It feels as if my entire

spine is collapsing. I have severe osteopenia in the area that my

spondililothesis is; and am nervous about them putting a needle into that

area -- let alone surgery with potential screws and glue and mesh and such.

I am on a spondiliothesis list and most people on there (the majority do

*not* have EDS) have had unsuccessful fusions and report more pain then they

had initially. On the other hand there are people on there with stage 5

spondiliothesis whose doctors refuse to even touch them as it has gotten too

far to fix. I feel that my spine is crumbling and the window of opportunity

to fuse is gone. I don¹t know what the answer is and am looking forward to

further replies to your question. Sometimes I wonder if my answer will be

to have a very good spondilothesis brace made that I will need to wear

whenever I am in any vertical position.

I hope this helps and does not further scare you. You are not alone though.

On 2/1/04 9:06 AM, " ceda " <ceda > wrote:

> From: pandhcmovingon@...

> Subject: Re: Info desperately needed please!!!! please reply someone

>

> Hi everyone, this is Helen C from South Oz. I have asked this before and

> only had one reply. Thanks Judy from Atlanta. I have a lot of problems with

> my

> pelvic organs. I have a part prolapse bladder, looks like half of it is large

> diverticula, also urgency, frequency and stress incontinence. A huge

> rectocele which is prolapsing and problems with my large bowel which will

> probably

> need repairing also. Does anyone know where I can get some straight forward

> information regarding surgery in this area suitable to give to a

> Gynaecologist?

> There are no Doctors who know or want to know anything about EDS here in

> Adelaide. I have left getting theses repairs done for too long and I am

> concerned

> that whoever does the surgery might not take my EDS into consideration. So

> please where can I get information to send to a gynaecologist????

>

> I also have dreadful pain in my back and am now getting rt side sciatica. I

> feel like I have a saw inbetween the lumbar and sacral which is very painful

> most of the time. I hurt after just standing for about 5 mins. The pain is

> getting almost unbearable. I also feel like I have an icepick! sticking into

> my

> backside and if I make a wrong move it sends electric shocks down my rt leg.

> Sometimes when I am just standing parts of both legs go numb. I have woken

> up with a numb right leg. I have an appointment to see a public neurosurgeon

> on the 26th March and hopefully he will order a MRI. The problem is should I

> deal with my back first or go for the repair jobs. I am worried as to the

> pain

> in my back after the repair job. Has anyone had a laminectomy (fusing the

> vertebrae)? Was it successful? What should I do??????? Please help, I am

> desperate. Has anyone else had these problems? Do you think they are due to

> the

> EDS? I most certainly do.

>

> Desperately awaiting your answers.

>

> Gentle Hugs,

> Helen C,

> South Oz

[Guest guest]

Hello Helen C

I was to the point that they were going to do surgery. Thankfully my OBGYN

referred me to a woman who did visceral MFR on me. (Mike can probably tell

you better then I what that is and how it is done.) Briefly they go in

vaginally and released my hip flexors and it relaxed the pelvic organs.

Also she released the urethera and it rid me of a constant cycle of being

cathetered (sp) which would only retraumatise my pelvic muscles.

Having said that though -- I still find myself in exactly the same

predictiment in my back and spine that you are. Like you it felt like an

icepick. Docs are talking about doing a 'medial nerve block' or something

like that. I feel really uncomfortable with that procedure as I feel they

have not truly accessed the condition of my spine. It feels as if my entire

spine is collapsing. I have severe osteopenia in the area that my

spondililothesis is; and am nervous about them putting a needle into that

area -- let alone surgery with potential screws and glue and mesh and such.

I am on a spondiliothesis list and most people on there (the majority do

*not* have EDS) have had unsuccessful fusions and report more pain then they

had initially. On the other hand there are people on there with stage 5

spondiliothesis whose doctors refuse to even touch them as it has gotten too

far to fix. I feel that my spine is crumbling and the window of opportunity

to fuse is gone. I don¹t know what the answer is and am looking forward to

further replies to your question. Sometimes I wonder if my answer will be

to have a very good spondilothesis brace made that I will need to wear

whenever I am in any vertical position.

I hope this helps and does not further scare you. You are not alone though.

On 2/1/04 9:06 AM, " ceda " <ceda > wrote:

> From: pandhcmovingon@...

> Subject: Re: Info desperately needed please!!!! please reply someone

>

> Hi everyone, this is Helen C from South Oz. I have asked this before and

> only had one reply. Thanks Judy from Atlanta. I have a lot of problems with

> my

> pelvic organs. I have a part prolapse bladder, looks like half of it is large

> diverticula, also urgency, frequency and stress incontinence. A huge

> rectocele which is prolapsing and problems with my large bowel which will

> probably

> need repairing also. Does anyone know where I can get some straight forward

> information regarding surgery in this area suitable to give to a

> Gynaecologist?

> There are no Doctors who know or want to know anything about EDS here in

> Adelaide. I have left getting theses repairs done for too long and I am

> concerned

> that whoever does the surgery might not take my EDS into consideration. So

> please where can I get information to send to a gynaecologist????

>

> I also have dreadful pain in my back and am now getting rt side sciatica. I

> feel like I have a saw inbetween the lumbar and sacral which is very painful

> most of the time. I hurt after just standing for about 5 mins. The pain is

> getting almost unbearable. I also feel like I have an icepick! sticking into

> my

> backside and if I make a wrong move it sends electric shocks down my rt leg.

> Sometimes when I am just standing parts of both legs go numb. I have woken

> up with a numb right leg. I have an appointment to see a public neurosurgeon

> on the 26th March and hopefully he will order a MRI. The problem is should I

> deal with my back first or go for the repair jobs. I am worried as to the

> pain

> in my back after the repair job. Has anyone had a laminectomy (fusing the

> vertebrae)? Was it successful? What should I do??????? Please help, I am

> desperate. Has anyone else had these problems? Do you think they are due to

> the

> EDS? I most certainly do.

>

> Desperately awaiting your answers.

>

> Gentle Hugs,

> Helen C,

> South Oz

[Guest guest]

I can't realy tell you what you want to know but -

Did you say you have a prolapse uteris?

I did have a prolapse uteris, and it caused a lot of other problems for me.

Mainly with my periods and bladder. I had to pee all the time.

The dr said the uteris may be pulling on the bladder - ?

I got a hysterectomy in May, and those problems are now gone.

[Guest guest]

The dr said the uteris may be pulling on the bladder - ?

------------------------

Definite possibility since the bladder attaches by a ligament to the

pubic bone in front and directly to the uterus via fascia, behind

and above the bladder.

If the uterus is in prolapse (falling down within the body cavity),

it is going to put a pull or pressure on the bladder at the same

time. Since the bladder is like a bag, if it is full and you put

pressure in one location, the bladder contents are going to move

away from that pressure. I think this adequately describes what you

can then expect to happen with same said contents.