Re: Bad couple of days!!! Menstruation

[Guest guest]

I was interested to read what you say about a link between gynaecological

problems and TCS. Shortly after my TCS diagnosis I started to get very severe

abdominal pains. I felt that it was related to my menstral cycles so the GP

referred me to a Gynaecologist. I explained to him the problem with my back and

that the pains were at their worst when my back was sore too. He thought it

was a possibility that they were linked. About a year later after trying

various drug treatments I decided to go privately to have a laparoscopy. It

turned

out that I had an ovarian cyst - but it was only the size of a mandrin orange

and shouldn't really account for the severity of the pain. So possibly with

whatever is going on with my damaged nerves the pain in this area was

heightened.

I find that most illnesses and stresses make my back much worse.

Emma

[Guest guest]

Hi gang,

I just wanted to share my own experience with TC and menstrual cycle.

Before I was diagnosed with tethered cord, I was seeing a

gynecologist for severe symptoms during my menstrual cycle. By

keeping track of what was happening for awhile, I was able to note

that at the time of ovulation, I experienced pain in my back and

right leg, headaches and mild mood instability. Starting with the

pre-menstrual days, I experienced back and leg pain, (worse than

during ovulation) moderate mood instability, headaches, abdominal

cramping, worsening of bladder incontinence and diarrhea. My cycle

became shortened over a period of several years - from averaging 28

days down to averaging 23 days. The flow became heavier and the

duration went from averaging 5 days to averaging 9 days.

All of this coming from a woman who, in the past, had believed that

PMS was a myth and whose menstrual cycle was just a minor

inconvenience every month. Of course, I was told that this was all

just a normal course of aging. I disagreed with this because at the

time, I was in my late thirties and none of my older relatives had

experienced early menopause. The gynecologist finally tested my

hormone levels and said that they were in the normal range, but that

didn't mean that I wasn't pre-menopausal because they didn't have a

baseline hormone reading to compare my levels to.

Finally, the gyn. put me on a 6-month course of Lupron Depot to stop

my cycle to determine where my symptoms were coming from.

Meanwhile, I was experiencing other problems that had my family

doctor send me to the physiatrist who diagnosed tethered cord. I was

still on Lupron Depot when I had my detethering surgery, but my 6-

months were up two months after the surgery and I started

menstruating again.

It is now a year later. Life is pure he** during that time of month.

I can barely function physically due to pain and weakness, I can't

leave the house because of bladder and bowel incontinence and I'm so

messed up emotionally during that time that I'm afraid that I might

just curl up on the floor crying and never stop.

The gynecologist has agreed to- and is supporting a full

hysterectomy for me. My family doctor, physiatrist and neurosurgeon

are also supporting this route. None of them have been able to

explain why this happens, but they do agree that the evidence

supports the existence of the symptoms and the relationship to the

tethered cord.

This is good news for me - I'm relieved that this is finally going

to happen and despite the hormonal changes that I will experience

following surgery, I'm looking forward to an improvement in my

quality of life. Unfortunately, it won't be happening until fall

because the surgeon's summer calender is booked completely. (The

secretary wouldn't tell me if it was booked with surgeries or

vacation time <G>).

I feel a little frightened, not of the surgery, but if I am going to

be able to endure another 3 or 4 menstrual cycles before my surgery.

Each one seems to be worse than the one before it.

I'm glad to know that there are others who experience worse symptoms

during menstruation, but sad to think that you have to have this

he** in your life on top of all of the other things that go with TC.

An interesting point in all of this, is that my mother pointed out

to me that after my cord surgery as an infant, she was told that I

might not ever menstruate or be able to have children because they

thought the nerves to my reproductive organs may have been damaged

during the surgery. Well, they certainly worked well enough, I have

two lovely children (and have had four miscarriages), but it is true

that the nerves to these organs originate from the lumbar spine, so

I guess they can be affected in the same way as back, legs, bladder

and bowel, etc.

Perhaps this is just another chapter in the book on Tethered Cord!

Take care,

V.

> Hi guys,

I think some of it is pms too. Why are our symptoms worse during

that time? If the pain would level out I think I could deal with a

lot of it

Chris

[Guest guest]

,

I also have noticed similiar symptoms during my cycle. The first time I

started to tie it to TC was when I noticed my bladder incontinence was worse at

this time. Again it is nice to know I am not crazy and there are others who can

validate your thoughts,etc., even though most in the medical community do not.

Thank heaven for the internet!!!!!

Lynn

[Guest guest]

I always thought that it was weird being 17 and having my period

every 2 1/2-3 weeks, I never thought that it was linked to TC so I

guess I will have to talk to my dr. about that, because a 3 week

break in between is not enough lol. I havent yet mentioned this to

my dr. because the last time I was there I was planning a surgery so

I forgot to bring it up.

M.

> > Hi guys,

> I think some of it is pms too. Why are our symptoms worse during

> that time? If the pain would level out I think I could deal with a

> lot of it

> Chris

[Guest guest]

In a message dated 7/1/2003 10:12:54 AM Eastern Daylight Time,

EmmaJoyHunter@... writes:

> He thought it

> was a possibility that they were linked. About a year later after trying

> various drug treatments I decided to go privately to have a laparoscopy.

Why is it every doctor I tell about my cord is like stupid. They don't even

know what the hell it is!!! I need a real doctor here in tampa. Not some

dummy's.

I've had tons of laps. no fun and makes my back way worse after the laps!

it's after the last lap that they found a tethered cord cause i could not pick

up one damn toy off the floor lol

Dianne

[Guest guest]

In a message dated 7/1/2003 11:09:28 PM Eastern Daylight Time,

i_didnt_do_it85@... writes:

> I always thought that it was weird being 17 and having my period

> every 2 1/2-3 weeks, I never thought that it was linked to TC

Don't think that is why you are GETTING a period so often, just makes your

cramps worse i think.

Di