Re: bladder issues

[Guest guest]

Lynn

I would like very much to msg with you. As a woman with tethered cord, my

interest in belonging to the group is primarily how I can improve, preserve the

quality of my daily life-for me it's not about how many more surgeries I can

tolerate. I'm kind of where you are in terms of wanting to live day to day as

normally as possible and trying to stay at my best. I have had good success

patiently building strength with certain exercise regimens, though stress does

negate it.

Pat

patlinda@...

[Guest guest]

Lynn,

I do not post alot myself, but do my best to keep up with the posts. I feel

that this group is very supportive and understanding even with difficult issues.

That is what makes the group so worthwhile. I too have the same concerns as you

and would be happy to discuss more privately if you wish. It seems you are going

thru alot of changes in your life, and a divorce is a big change. I know that

when I experience more stress and change in my life, my pain level increases. I

exercise on a regular basis..even though it does irritate my nerves and pain

increases. Yet, if I do not, I get very very weak. The solution I have found

for me, is to exercise at the end of the day (I am fortunate to have a fitness

center at work) that way, I can go home and " rest " the rest of the evening.

Exercise will help with your stress. I would check with your dr to be sure

though on the exercise; I was doing a couple of things, that my dr said probably

weren't the best for my condition.

Just remember, you are not alone with all of this.

Hugs,

Cassandra

ldavisred wrote:

Hi All,

I haven't posted in a long time but have been doing my best to keep

up with posts. I am currently going through a divorce. I believe

that some of my TSC issues contributed, in part, to the fall of my

marriage. Anyway, I have some questions about the sensitive issue of

bladder problems and how they effect sexual relations. I am having

difficulty moving on because I feel ashamed that I have these issues

and feel that nobody will want me. How do I go about getting posts

privately from people who wish to help me with this issue that may

be too personal for the group as a whole? Also, I have recently lost

45 pounds (stress mostly) and have begun a walking program and

working out. I have noticed an increase in my nerve pain, which is

generally mild to moderate. My question is this: if I can take the

pain, am I doing any additional damage by working out? I am not

doing a lot of stretching, mostly cardio and wt training with

machines. Thanks. I am so glad that this group exists. My family and

my soon to be ex-husband do not understand what I go through because

I look so normal and my symptoms are not obvious unless I am having

a big flare up. This also leads to feeling of guilt and anger

because I think people think I am making things up when I talk about

my symptoms. Thus, I don't talk about it much. I have a really good

therapist who is helping me work through these feelings but she is

not able to help me with the physical issues. Thanks for any input.

Lynn

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

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[Guest guest]

Hi Lynn. Sorry to hear about your divorce. I hope it

is a good thing and you move onto a new life and a new

journey with excitement.

Bladder issues and sex. You know, I usually have a

really smart mouth answer to this that might help you

put it in perspective. I don't mean any disrespect to

the men on the list, but in my experience, men don't

care if you pee on them during sex. I don't think a

lot of men would notice if you died on them during

sex. There are entire comedy bits about men have to

do all this work to get some and all a woman has to do

is show up.

The fear you have is definitely yours. I used to get

so embarrassed when it would happen, but since it only

happened when things were really, really good, my

husband took it as a compliment, kind of like applause

for a job well done. I also find if I empty my

bladder immediately before, I'm much less likely to

have a problem.

The way I look at it, there are a whole lot of fluids

exchanged during sex. What's one more?

Is your therapist working with you on this particular

fear? I found that being upfront with my husband when

we first started dating made things much easier when

we finally chose to be intimate. But please don't

feel that having this kind of issue puts you out of

the running for any decent man. It doesn't. There

are tons of good men out there. And remember, no one

is perfect, even if they physically appear to be.

--- ldavisred wrote:

> Hi All,

> I haven't posted in a long time but have been doing

> my best to keep

> up with posts. I am currently going through a

> divorce. I believe

> that some of my TSC issues contributed, in part, to

> the fall of my

> marriage. Anyway, I have some questions about the

> sensitive issue of

> bladder problems and how they effect sexual

> relations. I am having

> difficulty moving on because I feel ashamed that I

> have these issues

> and feel that nobody will want me. How do I go about

> getting posts

> privately from people who wish to help me with this

> issue that may

> be too personal for the group as a whole? Also, I

> have recently lost

> 45 pounds (stress mostly) and have begun a walking

> program and

> working out. I have noticed an increase in my nerve

> pain, which is

> generally mild to moderate. My question is this: if

> I can take the

> pain, am I doing any additional damage by working

> out? I am not

> doing a lot of stretching, mostly cardio and wt

> training with

> machines. Thanks. I am so glad that this group

> exists. My family and

> my soon to be ex-husband do not understand what I go

> through because

> I look so normal and my symptoms are not obvious

> unless I am having

> a big flare up. This also leads to feeling of guilt

> and anger

> because I think people think I am making things up

> when I talk about

> my symptoms. Thus, I don't talk about it much. I

> have a really good

> therapist who is helping me work through these

> feelings but she is

> not able to help me with the physical issues. Thanks

> for any input.

>

> Lynn

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi Cassandra..What do you mean when you say " weak. " My daughter uses that

term frequently and says sometimes she feels she has to wait a minute or two

before getting up to be sure her legs will hold her though they have never not

held her. She was told she can do any exercise she wants ... are there some

forms you have found to be more debilitating than helpful?

Thanks,

randee

PS Lynn!!! Much good luck to you!! Scary and difficult time. It will get

better as they say..but it really does.

[Guest guest]

Well said and so truthful!! Once we have been married and been

extremely intimate with one, or multiple partners through dating, we all realize

that there are many situations that could have become embarassing for one or

both partners if the partners had not cared for each other in the first place.

That is the most important piece, Lynn, you must realize, the relationship.

Also, having a since of humor!!!! My boyfriend of six years, knowing that it

does not bother me, will joke about it and helps me feel comfortable about when

it happens. And , you are right about when it does, it is during some

of the best, because we let go and don't stress. It is important to them that

we are enjoying our time together -- No matter the outcome....

OK, I could not help that funny!!!!!

Lynn, hang in there through the divorce and the changes. I am proud that you

are working on " you " !!

Have a great week to all.

Weaver wrote:

Hi Lynn. Sorry to hear about your divorce. I hope it

is a good thing and you move onto a new life and a new

journey with excitement.

Bladder issues and sex. You know, I usually have a

really smart mouth answer to this that might help you

put it in perspective. I don't mean any disrespect to

the men on the list, but in my experience, men don't

care if you pee on them during sex. I don't think a

lot of men would notice if you died on them during

sex. There are entire comedy bits about men have to

do all this work to get some and all a woman has to do

is show up.

The fear you have is definitely yours. I used to get

so embarrassed when it would happen, but since it only

happened when things were really, really good, my

husband took it as a compliment, kind of like applause

for a job well done. I also find if I empty my

bladder immediately before, I'm much less likely to

have a problem.

The way I look at it, there are a whole lot of fluids

exchanged during sex. What's one more?

Is your therapist working with you on this particular

fear? I found that being upfront with my husband when

we first started dating made things much easier when

we finally chose to be intimate. But please don't

feel that having this kind of issue puts you out of

the running for any decent man. It doesn't. There

are tons of good men out there. And remember, no one

is perfect, even if they physically appear to be.

--- ldavisred wrote:

> Hi All,

> I haven't posted in a long time but have been doing

> my best to keep

> up with posts. I am currently going through a

> divorce. I believe

> that some of my TSC issues contributed, in part, to

> the fall of my

> marriage. Anyway, I have some questions about the

> sensitive issue of

> bladder problems and how they effect sexual

> relations. I am having

> difficulty moving on because I feel ashamed that I

> have these issues

> and feel that nobody will want me. How do I go about

> getting posts

> privately from people who wish to help me with this

> issue that may

> be too personal for the group as a whole? Also, I

> have recently lost

> 45 pounds (stress mostly) and have begun a walking

> program and

> working out. I have noticed an increase in my nerve

> pain, which is

> generally mild to moderate. My question is this: if

> I can take the

> pain, am I doing any additional damage by working

> out? I am not

> doing a lot of stretching, mostly cardio and wt

> training with

> machines. Thanks. I am so glad that this group

> exists. My family and

> my soon to be ex-husband do not understand what I go

> through because

> I look so normal and my symptoms are not obvious

> unless I am having

> a big flare up. This also leads to feeling of guilt

> and anger

> because I think people think I am making things up

> when I talk about

> my symptoms. Thus, I don't talk about it much. I

> have a really good

> therapist who is helping me work through these

> feelings but she is

> not able to help me with the physical issues. Thanks

> for any input.

>

> Lynn

>

>

>

>

>

__________________________________________________

[Guest guest]

Randee,

I go through periods where my legs feel like they are

made of jello. Like I spent the day lifting weights

to the point of muscle exhaustion. Have you ever

lifted weights? You know how they tell you to lift to

the point of exhausion? It feels like there is no way

in the world you could lift that weight one more time.

That's how my legs feel when I'm working out (which I

rarely do anymore), and often when I walk too far.

I've never collapsed, but my legs shake like crazy

sometimes.

Mcihelle

--- Randeejae@... wrote:

> Hi Cassandra..What do you mean when you say " weak. "

> My daughter uses that

> term frequently and says sometimes she feels she has

> to wait a minute or two

> before getting up to be sure her legs will hold her

> though they have never not

> held her. She was told she can do any exercise she

> wants ... are there some

> forms you have found to be more debilitating than

> helpful?

> Thanks,

> randee

>

> PS Lynn!!! Much good luck to you!! Scary and

> difficult time. It will get

> better as they say..but it really does.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Beate..I am so sorry that you had such an outcome. My daughter was 14 at

her first surgery and she too has been worse with the subsequent two surgeries.

Her initial complaint was also pain. I am starting to wonder if pain alone

is enough to warrant surgery although the research clearly states that it is

best to do it as soon as the TC is discovered. In her case, she produces so

much scar tissue that it retethers her tightly. Please keep us posted

regarding what they recommend for your next step.

Randee

[Guest guest]

Hello to all of you..

My name is Beate and i am from norway. I have TCS, and that was discovered

when i had my surgery i 2002, now i am 45 years old.

Right after the surgery my life was very beautiful the paine was almost

gone.... but how long was i in heaven.... almost 9 months. The pain came

back, but it was not the same pain as i had before. My bladder got worse...

and now, i have to cath my self 6 timse a day.. im on a lot of painkillers,

and my legs are getting weaker... and now im waiting for a new appointment

at the hospital.. I really would like to talk to some one with similar

problems... on the msn.. i do not have other conditions like spina bifida or

hydrocepalus.. not that i know.

Pleas excuse my english.. as i told you im from norway... and in norway we

speak norwegain.

Best regards from Beate in Norway

>

> Lynn

> I would like very much to msg with you. As a woman with tethered cord, my

> interest in belonging to the group is primarily how I can improve, preserve

> the quality of my daily life-for me it's not about how many more surgeries I

> can tolerate. I'm kind of where you are in terms of wanting to live day to

> day as normally as possible and trying to stay at my best. I have had good

> success patiently building strength with certain exercise regimens, though

> stress does negate it.

> Pat

> patlinda@... <patlinda%40cox.net>

>

>

[Guest guest]

Thank you for your reply Randee

In norway we are very few with this diagnosis, that is why the doctors know

so little..... i don`t know anybody with " only " the TCS... maybe i can meet

somebody at the internet.

Best regards from Beate

>

> Beate..I am so sorry that you had such an outcome. My daughter was 14 at

>

> her first surgery and she too has been worse with the subsequent two

> surgeries.

> Her initial complaint was also pain. I am starting to wonder if pain alone

>

> is enough to warrant surgery although the research clearly states that it

> is

> best to do it as soon as the TC is discovered. In her case, she produces

> so

> much scar tissue that it retethers her tightly. Please keep us posted

> regarding what they recommend for your next step.

> Randee

>

>