Re: need some thoughts re severe pelvic pain

[Guest guest]

Pamela

I don't have any insight into this, but wanted to let you and Penny

know that I am thinking of you.

laurie

> Hi oh wise ones - I am fairly new and wrote recently about my daughter Penny

who is 21, and had been having numb or giving way legs. We are attempting to

get her tested as I have MELAS but she has to wait in the queue. Over the last

few months she has also had what appeared to be dysmenorrhea (severe period

pain) several days prior to and 2 days into her period. Eventually as it was

getting worse her doctor suggested she go on the pill to control this, which was

about three weeks ago. This was just before her period was due therefore would

not have effect till her next cycle. Nevertheless her pain is now daily and so

severe she spends most of her time in bed crying and groaning and this has now

been going on for 25 days almost non stop (occasionally she has a reprieve for

an hour or two but then it starts again). It seems to be made worse by movement

(eg when she has to get up to go to the bathroom) and is to some extent relieved

by heat packs. She can't take anti-inflammatories due to another condition

(hereditary haemorrhagic telangiectasia) which will cause her nose to bleed

heavily, so there is nothing to relieve the pain as Panadeine Forte has not done

anything, nor Baclofen (muscle relaxant) or Buscopan (antispasmodic) to help.

>

> Because this pain has been going on so long doctors are concerned but today

she had a clear pelvic ultrasound and blood tests that gynos normally do (pap

smear not back yet). Gyno said next step is a kidney scan.

>

> I was wondering if anyone can shed some light on this perhaps from personal

experience - does this sound like a mito problem? Many thanks, in advance.

Pamela

>

>

[Guest guest]

I definately have a lot more symptoms of mito during a menstrual

cycle. Certainly she could have other things going on as well. Good

to hear the doc's are working on it. Remeber to avoid caffine and

sugar as these will make pms symptoms significantly worse. Regular

exercise and good hydration can reduce symptoms. I also use a heating

pad ( low heat, for short durations ). Best of luck. I hope she

feels better soon.

bug

[Guest guest]

I don't know about mito causing this but we just had a inservice todaya t work

on pelvic and abdominal dysdunction from 0one of our physical therapist who is

doing womens help patients now with good success. I would maybe pursue the idea

of her being seen for this. Sound like her pelvic floor is in spasm.

Laurie Fitzgerald laurie.fitzgerald@...> wrote:Pamela

I don't have any insight into this, but wanted to let you and Penny

know that I am thinking of you.

laurie

> Hi oh wise ones - I am fairly new and wrote recently about my daughter Penny

who is 21, and had been having numb or giving way legs. We are attempting to

get her tested as I have MELAS but she has to wait in the queue. Over the last

few months she has also had what appeared to be dysmenorrhea (severe period

pain) several days prior to and 2 days into her period. Eventually as it was

getting worse her doctor suggested she go on the pill to control this, which was

about three weeks ago. This was just before her period was due therefore would

not have effect till her next cycle. Nevertheless her pain is now daily and so

severe she spends most of her time in bed crying and groaning and this has now

been going on for 25 days almost non stop (occasionally she has a reprieve for

an hour or two but then it starts again). It seems to be made worse by movement

(eg when she has to get up to go to the bathroom) and is to some extent relieved

by heat packs. She can't take

anti-inflammatories due to another condition (hereditary haemorrhagic

telangiectasia) which will cause her nose to bleed heavily, so there is nothing

to relieve the pain as Panadeine Forte has not done anything, nor Baclofen

(muscle relaxant) or Buscopan (antispasmodic) to help.

>

> Because this pain has been going on so long doctors are concerned but today

she had a clear pelvic ultrasound and blood tests that gynos normally do (pap

smear not back yet). Gyno said next step is a kidney scan.

>

> I was wondering if anyone can shed some light on this perhaps from personal

experience - does this sound like a mito problem? Many thanks, in advance.

Pamela

>

>

[Guest guest]

Has she had a diagnostic laparoscopy to check for endometriosis? Endometriosis

can be very painful and will not usually show up on an ultrasound. I don't know

about it being related to mito but a laparoscopy would be a good way to see if

she has endometriosis.

> Hi oh wise ones - I am fairly new and wrote recently about my daughter Penny

who is 21, and had been having numb or giving way legs. We are attempting to

get her tested as I have MELAS but she has to wait in the queue. Over the last

few months she has also had what appeared to be dysmenorrhea (severe period

pain) several days prior to and 2 days into her period. Eventually as it was

getting worse her doctor suggested she go on the pill to control this, which was

about three weeks ago. This was just before her period was due therefore would

not have effect till her next cycle. Nevertheless her pain is now daily and so

severe she spends most of her time in bed crying and groaning and this has now

been going on for 25 days almost non stop (occasionally she has a reprieve for

an hour or two but then it starts again). It seems to be made worse by movement

(eg when she has to get up to go to the bathroom) and is to some extent relieved

by heat packs. She can't take

anti-inflammatories due to another condition (hereditary haemorrhagic

telangiectasia) which will cause her nose to bleed heavily, so there is nothing

to relieve the pain as Panadeine Forte has not done anything, nor Baclofen

(muscle relaxant) or Buscopan (antispasmodic) to help.

>

> Because this pain has been going on so long doctors are concerned but today

she had a clear pelvic ultrasound and blood tests that gynos normally do (pap

smear not back yet). Gyno said next step is a kidney scan.

>

> I was wondering if anyone can shed some light on this perhaps from personal

experience - does this sound like a mito problem? Many thanks, in advance.

Pamela

>

>

[Guest guest]

Thanks everyone for going to the trouble of giving your thoughts. It is so much

appreciated. This morning Penny's pain was so bad we called an ambulance to get

her into Emergency. They gave her something to ease the pain for a short while

and did say it might be endometriosis. They have to do a pelvic scan and as you

suggest , a laparoscopy. Meanwhile they gave her Tramadol (morphine) in

tablet form and sent her home as nothing they could do till she has the tests

but she has just thrown up from it so is going back to just heat packs every

hour or so. As suggested there must be spasm involved also. Will let you know

what transpires... (hey isn't 21 supposed to be the best time of your life...)

pamela

Re: need some thoughts re severe pelvic pain

Has she had a diagnostic laparoscopy to check for endometriosis? Endometriosis

can be very painful and will not usually show up on an ultrasound. I don't know

about it being related to mito but a laparoscopy would be a good way to see if

she has endometriosis.

> Hi oh wise ones - I am fairly new and wrote recently about my daughter Penny

who is 21, and had been having numb or giving way legs. We are attempting to

get her tested as I have MELAS but she has to wait in the queue. Over the last

few months she has also had what appeared to be dysmenorrhea (severe period

pain) several days prior to and 2 days into her period. Eventually as it was

getting worse her doctor suggested she go on the pill to control this, which was

about three weeks ago. This was just before her period was due therefore would

not have effect till her next cycle. Nevertheless her pain is now daily and so

severe she spends most of her time in bed crying and groaning and this has now

been going on for 25 days almost non stop (occasionally she has a reprieve for

an hour or two but then it starts again). It seems to be made worse by movement

(eg when she has to get up to go to the bathroom) and is to some extent relieved

by heat packs. She can't take

anti-inflammatories due to another condition (hereditary haemorrhagic

telangiectasia) which will cause her nose to bleed heavily, so there is nothing

to relieve the pain as Panadeine Forte has not done anything, nor Baclofen

(muscle relaxant) or Buscopan (antispasmodic) to help.

>

> Because this pain has been going on so long doctors are concerned but today

she had a clear pelvic ultrasound and blood tests that gynos normally do (pap

smear not back yet). Gyno said next step is a kidney scan.

>

> I was wondering if anyone can shed some light on this perhaps from personal

experience - does this sound like a mito problem? Many thanks, in advance.

Pamela

>

>

[Guest guest]

HI ,

I agree with you 100%. Endometriosis is very painful. I had a few

laparoscopies for mine. And I had it so bad that it was wrapped

around my bladder and my bowels. My sister also had endometriosis.

And it causes alot of problems that you might not even think are

associated with it.

Just a Thought. I hope she is feeling better.

Hugs,

Ann-Marie

At 06:46 AM 9/28/2005, you wrote:

>Has she had a diagnostic laparoscopy to check for endometriosis?

>Endometriosis can be very painful and will not usually show up on an

>ultrasound. I don't know about it being related to mito but a

>laparoscopy would be a good way to see if she has endometriosis.

>

>

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[Guest guest]

So can uterine fibroids. I have both.

Ann-Marie Mc wrote:

>HI ,

>

>I agree with you 100%. Endometriosis is very painful. I had a few

>laparoscopies for mine. And I had it so bad that it was wrapped

>around my bladder and my bowels. My sister also had endometriosis.

>And it causes alot of problems that you might not even think are

>associated with it.

>

>Just a Thought. I hope she is feeling better.

>

>Hugs,

>Ann-Marie

>

>

>

>

>At 06:46 AM 9/28/2005, you wrote:

>

>

>>Has she had a diagnostic laparoscopy to check for endometriosis?

>>Endometriosis can be very painful and will not usually show up on an

>>ultrasound. I don't know about it being related to mito but a

>>laparoscopy would be a good way to see if she has endometriosis.

>>

>>

>>

>>

>

> ----------

>

>

>

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>Checked by AVG Anti-Virus.

>Version: 7.0.344 / Virus Database: 267.11.8/114 - Release Date: 9/28/2005

>

>

>

[Guest guest]

Hi Pam,

I am sorry to read that Penny was in such severe pain that you had to

call the ambulance and go to the ER. Thankfully they gave her

something to help with the pain if only for a short while.

It sounds like the doctors in the ER are on the right track with

suggesting those tests. I am surprised that they didn't do the Pelvic

Scan while she was there. Please make sure you get the Pelvic Scan

done as soon as possible and then if necessary(according to the

results of the scan) schedule the laparoscopy.

You mentioned that Penny got sick on the Tramadol(morphine tablets).

Maybe you can call her PCP and explain to him/her what is happening

with Penny and that the ER gave her morphine tablets but she got sick

on them and ask if they can give you a different prescription for her

pain. That pain is horrible and no one should have to have to try to

live thru the pain. Heating pads only do so much.

You said that there might be a spasm involved, what makes you think

that a spasm may also be involved? Sorry, I might have missed

something in your other post.

Please tell Penny that I will keep her in my prayers and I hope that

she is feeling better and that the pain level lessens. And yes 21 is

the age of being care-free and fancy-free, not having to worry about

anything, enjoying life to the fullest. I hope that Penny will be

care-free, happy and back to enjoying the best time of her life.!!! :-)

Hugs,

Ann-Marie

At 10:24 AM 9/28/2005, you wrote:

>Thanks everyone for going to the trouble of giving your

>thoughts. It is so much appreciated. This morning Penny's pain was

>so bad we called an ambulance to get her into Emergency. They gave

>her something to ease the pain for a short while and did say it

>might be endometriosis. They have to do a pelvic scan and as you

>suggest , a laparoscopy. Meanwhile they gave her Tramadol

>(morphine) in tablet form and sent her home as nothing they could do

>till she has the tests but she has just thrown up from it so is

>going back to just heat packs every hour or so. As suggested there

>must be spasm involved also. Will let you know what

>transpires... (hey isn't 21 supposed to be the best time of your

>life...) pamela

>

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[Guest guest]

If it happens on only one side it could also be irritable bowel syndome. I was

thought to have endometriosis because I had very bad pains on my left side that

would get worse around the time of my monthly period. They would subside after

my bleeding would stop for the month. I always had periods that were very heavy

flow and 7 or more days long.

Anyway, a laparoscopy showed no sign of endometriosis. All the docs could

figure out was that I had a longer than normal colon and maybe I was having

spasms caused by hormones during my period. I was given some meds for a couple

of months.

I do not really have a solution though, I had an unusual cure. My husband had

gotten a shoulder injury at work in February, the same month I had the surgery.

He did not drive truck for a couple of months. In April I got pregnant and the

pain stopped.

Janet Sample

Re: need some thoughts re severe pelvic pain

Has she had a diagnostic laparoscopy to check for endometriosis? Endometriosis

can be very painful and will not usually show up on an ultrasound. I don't know

about it being related to mito but a laparoscopy would be a good way to see if

she has endometriosis.

> Hi oh wise ones - I am fairly new and wrote recently about my daughter Penny

who is 21, and had been having numb or giving way legs. We are attempting to

get her tested as I have MELAS but she has to wait in the queue. Over the last

few months she has also had what appeared to be dysmenorrhea (severe period

pain) several days prior to and 2 days into her period. Eventually as it was

getting worse her doctor suggested she go on the pill to control this, which was

about three weeks ago. This was just before her period was due therefore would

not have effect till her next cycle. Nevertheless her pain is now daily and so

severe she spends most of her time in bed crying and groaning and this has now

been going on for 25 days almost non stop (occasionally she has a reprieve for

an hour or two but then it starts again). It seems to be made worse by movement

(eg when she has to get up to go to the bathroom) and is to some extent relieved

by heat packs. She can't take

anti-inflammatories due to another condition (hereditary haemorrhagic

telangiectasia) which will cause her nose to bleed heavily, so there is nothing

to relieve the pain as Panadeine Forte has not done anything, nor Baclofen

(muscle relaxant) or Buscopan (antispasmodic) to help.

>

> Because this pain has been going on so long doctors are concerned but today

she had a clear pelvic ultrasound and blood tests that gynos normally do (pap

smear not back yet). Gyno said next step is a kidney scan.

>

> I was wondering if anyone can shed some light on this perhaps from personal

experience - does this sound like a mito problem? Many thanks, in advance.

Pamela

>

>

[Guest guest]

Pamela,

I have had endometriosis since I was about 20 (maybe even earlier). I have

also had ovarian cysts and fibroids. The pain can be excruciating. I am not

allowed to take any pain meds including Ibuprofen so I use hot packs and

take hot baths. I also am on Depo Provera which controls the endometriosis

somewhat and has kept me away from having a hysterectomy. Its a miracle drug

to

me but others on this list have had major problems with it. It has also

stopped my periods which were awful. The laparoscopies have helped a bit

because

the doctor is usually able to remove some of it. BTW none of my ultrasounds

have shown the cysts or endometriosis on me so perhaps they aren't the best

diagnostic procedure. I am a bit medically weird though lol. I hope they

figure out what is wrong with her.

[Guest guest]

a thousand thanks - all this info is invaluable. I think laparoscopy

is next, pamela

Re: need some thoughts re severe pelvic pain

Pamela,

I have had endometriosis since I was about 20 (maybe even earlier). I have

also had ovarian cysts and fibroids. The pain can be excruciating. I am not

allowed to take any pain meds including Ibuprofen so I use hot packs and

take hot baths. I also am on Depo Provera which controls the endometriosis

somewhat and has kept me away from having a hysterectomy. Its a miracle drug

to

me but others on this list have had major problems with it. It has also

stopped my periods which were awful. The laparoscopies have helped a bit

because

the doctor is usually able to remove some of it. BTW none of my ultrasounds

have shown the cysts or endometriosis on me so perhaps they aren't the best

diagnostic procedure. I am a bit medically weird though lol. I hope they

figure out what is wrong with her.