I'm New

[Guest guest]

I'm 38 years old and originally had 1 fibroid which they said was the

size of a golf ball and nothing to worry about. 2 years later I had

another ultrasound and now they say I have 4 with the largest being

5x6 centimeters and an enlarged uterus. When I found that out I was

pretty scared I just got married and want kids and my age is a big

enough factor to deal with. I read the sex lies book (great book)

and did a lot of research on the internet - I wanted to be as

educated as I could when I went to the gynecologist. This woman was

unbeleivable. She seemed put off because I had done research and

because I had questions. She told me there was nothing I had to do

right away about this - which was going to be my choice anyway. Then

she proceded to tell me things like my back pain is not caused by

this, constipation is not caused by this, headaches are not caused by

this and here is the real kicker hormones have no effect on any of

this and they only effect your body once a month anyway. The large

fibroid is on the outside - my old doctor told me that. I asked

where the new ones were and she said it is impossible to say. She

also told me I don't just have 4 I probably have 100's they just

can't see them all. Ok so am I nuts or is she just unaware? All of

the publications that I have read say this can cause lower back

pain. I cannot stand for longer than 20-25 minutes and my lower back

hurts and I have shooting pains in both legs. I have had a back x-

ray and there is nothing wrong with my back. Couldn't that

pain be caused by the tumors. And ok so I am not 5'6 110lbs can't

this pooch out my stomach some? I can't loose weight and I have been

told it is because my hormones are outta whack cause of the fibroids

and then she tells me no it has nothing to do with it. I am more

confused than ever now. I have decided to find a better doctor but

can anyone tell me about this back pain? Is it really a symptom does

anyone else have it? And are my chances of getting pregnant and

carrying a baby lessened more because of my age or because of the

fibroids? I am just very very thankful the pain is manageable and I

don't have a bleeding issue.

Deb

[Guest guest]

Dear Deb

The only thing I can say is you should find another doctor. You will

probably realise from the other postings in the group that the symptoms you

have are more or less typical when fibroids are present. I do not have such

symptoms but I am equally disappointed by the attention I get from my

doctor. I will try to see another doctor If my points continue not to get

through to this one. Even though it is a bit difficult to find a good GP

here in England (most of them do not have enough time for you) I will make

an attempt to find someone else. And I will follow Pat's suggestion. If

things get to that point that I have to leave my GP I will write to her and

tell the reason I left. The message needs to get through on both sides of

the Atlantic.

Best Wishes

andra

I'm New

I read the sex lies book (great book)

and did a lot of research on the internet - I wanted to be as

educated as I could when I went to the gynecologist. This woman was

unbeleivable. She seemed put off because I had done research and

because I had questions. She told me there was nothing I had to do

right away about this - which was going to be my choice anyway. Then

she proceded to tell me things like my back pain is not caused by

this, constipation is not caused by this, headaches are not caused by

this and here is the real kicker hormones have no effect on any of

this and they only effect your body once a month anyway. The large

fibroid is on the outside - my old doctor told me that. I asked

where the new ones were and she said it is impossible to say. She

also told me I don't just have 4 I probably have 100's they just

can't see them all. Ok so am I nuts or is she just unaware? All of

the publications that I have read say this can cause lower back

pain. I cannot stand for longer than 20-25 minutes and my lower back

hurts and I have shooting pains in both legs. I have had a back x-

ray and there is nothing wrong with my back. Couldn't that

pain be caused by the tumors. And ok so I am not 5'6 110lbs can't

this pooch out my stomach some? I can't loose weight and I have been

told it is because my hormones are outta whack cause of the fibroids

and then she tells me no it has nothing to do with it. I am more

confused than ever now. I have decided to find a better doctor but

can anyone tell me about this back pain? Is it really a symptom does

anyone else have it? And are my chances of getting pregnant and

carrying a baby lessened more because of my age or because of the

fibroids? I am just very very thankful the pain is manageable and I

don't have a bleeding issue.

Deb

[Guest guest]

Hey, Deb -

re: Lower back pain

I have suffered of lower back pain --a.k.a sciatica pain-- for years (I'm a

recreational runner with a bad back). I wanted to suggest the following web

site for exercises that strengthen the lower back muscles:

http://orthoinfo.aaos.org/fact/thr_report.cfm?Thread_ID=17 & topcategory=Spine

The exercises are super easy, do not require any special equipment, and only

take 15 minutes per day and the results are almost immediate -- about a week

in my case. Hope this works!

Cheers,

Lizette

[Guest guest]

Hi Deb,

Yes, I, too, suffer periodically from lower back pain. From what I

read fibroids can put pressure on your nerves. In particular your

sciatic nerve in your back. I also get pain, or tingling down both

legs and numbness. I believe it's because where our fibroid is

situated. Mine is subserosal, which I think yours is too.

I'm having mine out March 12. Hang in there, you're not imagining

this.

Also, my stomach looks pregnant, too. Yuck!

I'd suggest to find another doctor who knows what they're talking

about. Sorry.

Susie

[Guest guest]

Thanks for the exercises I will certainly try them.

> Hey, Deb -

>

> re: Lower back pain

>

> I have suffered of lower back pain --a.k.a sciatica pain-- for

years (I'm a

> recreational runner with a bad back). I wanted to suggest the

following web

> site for exercises that strengthen the lower back muscles:

>

> http://orthoinfo.aaos.org/fact/thr_report.cfm?

Thread_ID=17 & topcategory=Spine

>

> The exercises are super easy, do not require any special equipment,

and only

> take 15 minutes per day and the results are almost immediate --

about a week

> in my case. Hope this works!

>

> Cheers,

> Lizette

[Guest guest]

Hi ,

Thank you for allowing me the opportunity to formally welcome you to the

group! Thank you for posting again.

Let me address a couple of things. First, the tea colored urine is somewhat

common, especially in conjunction with a respiratory condition. It is

hematuria, and more specifically gross hematuria as compared to microhematuria

visible only under a microscope. Actually, gross hematuria is a sign of better

prognosis than one who has only microhematuria to share a bit of good news mixed

in with feeling terrible. It can be frightening when it happens. There is not

much the doctor can do to treat it, but it is important to let him know about

it anyway. You may also experience a spike in your creatinine during this

flare up. I really hope this passes quickly for you and you feel better soon.

On the Epo, with a hematocrit as low as yours, you should have absolutely no

trouble at all getting approval. It takes a few weeks before you feel the

effects because the life cycle to maturation for red blood cells is about 21

days, but once that happens, you will be surprised at how much better you will

feel. In my book it is absolutely a miracle drug and I credit it with giving me

my life back. Please call and inquire about the approval because the sooner

you start on Epo, the sooner your energy levels will improve.

It sounds like you may already have some significant reduction of renal

function since your doctor is expecting dialysis in 1-2 years. That is about

where

I am too. My creatinine clearance is down to 20. Do you happen to know your

creatinine or creatinine clearance levels? I am very sorry you have

progressed that far, and especially sorry that IgAN has disrupted your plans to

have

children. That alone is a hard to bear when you have such a strong desire.

, once you get a diagnosis of a chronic illness, it is normal to go

through all the stages of grief from being ok to sadness and tears. It is

important to allow yourself to go through those stages. You have experienced a

loss

of your expectation of good health. You really have come to a wonderful

group. You will find an abundance of support and encouragement here, and

friends

who are committed to walk this path with you. You are not alone, but among

people who completely do understand what you are going through.

Welcome again , and we look forward to getting to know you.

[Guest guest]

Hi ,

Thank you for allowing me the opportunity to formally welcome you to the

group! Thank you for posting again.

Let me address a couple of things. First, the tea colored urine is somewhat

common, especially in conjunction with a respiratory condition. It is

hematuria, and more specifically gross hematuria as compared to microhematuria

visible only under a microscope. Actually, gross hematuria is a sign of better

prognosis than one who has only microhematuria to share a bit of good news mixed

in with feeling terrible. It can be frightening when it happens. There is not

much the doctor can do to treat it, but it is important to let him know about

it anyway. You may also experience a spike in your creatinine during this

flare up. I really hope this passes quickly for you and you feel better soon.

On the Epo, with a hematocrit as low as yours, you should have absolutely no

trouble at all getting approval. It takes a few weeks before you feel the

effects because the life cycle to maturation for red blood cells is about 21

days, but once that happens, you will be surprised at how much better you will

feel. In my book it is absolutely a miracle drug and I credit it with giving me

my life back. Please call and inquire about the approval because the sooner

you start on Epo, the sooner your energy levels will improve.

It sounds like you may already have some significant reduction of renal

function since your doctor is expecting dialysis in 1-2 years. That is about

where

I am too. My creatinine clearance is down to 20. Do you happen to know your

creatinine or creatinine clearance levels? I am very sorry you have

progressed that far, and especially sorry that IgAN has disrupted your plans to

have

children. That alone is a hard to bear when you have such a strong desire.

, once you get a diagnosis of a chronic illness, it is normal to go

through all the stages of grief from being ok to sadness and tears. It is

important to allow yourself to go through those stages. You have experienced a

loss

of your expectation of good health. You really have come to a wonderful

group. You will find an abundance of support and encouragement here, and

friends

who are committed to walk this path with you. You are not alone, but among

people who completely do understand what you are going through.

Welcome again , and we look forward to getting to know you.

[Guest guest]

Hi ,

Thank you for allowing me the opportunity to formally welcome you to the

group! Thank you for posting again.

Let me address a couple of things. First, the tea colored urine is somewhat

common, especially in conjunction with a respiratory condition. It is

hematuria, and more specifically gross hematuria as compared to microhematuria

visible only under a microscope. Actually, gross hematuria is a sign of better

prognosis than one who has only microhematuria to share a bit of good news mixed

in with feeling terrible. It can be frightening when it happens. There is not

much the doctor can do to treat it, but it is important to let him know about

it anyway. You may also experience a spike in your creatinine during this

flare up. I really hope this passes quickly for you and you feel better soon.

On the Epo, with a hematocrit as low as yours, you should have absolutely no

trouble at all getting approval. It takes a few weeks before you feel the

effects because the life cycle to maturation for red blood cells is about 21

days, but once that happens, you will be surprised at how much better you will

feel. In my book it is absolutely a miracle drug and I credit it with giving me

my life back. Please call and inquire about the approval because the sooner

you start on Epo, the sooner your energy levels will improve.

It sounds like you may already have some significant reduction of renal

function since your doctor is expecting dialysis in 1-2 years. That is about

where

I am too. My creatinine clearance is down to 20. Do you happen to know your

creatinine or creatinine clearance levels? I am very sorry you have

progressed that far, and especially sorry that IgAN has disrupted your plans to

have

children. That alone is a hard to bear when you have such a strong desire.

, once you get a diagnosis of a chronic illness, it is normal to go

through all the stages of grief from being ok to sadness and tears. It is

important to allow yourself to go through those stages. You have experienced a

loss

of your expectation of good health. You really have come to a wonderful

group. You will find an abundance of support and encouragement here, and

friends

who are committed to walk this path with you. You are not alone, but among

people who completely do understand what you are going through.

Welcome again , and we look forward to getting to know you.

[Guest guest]

Welcome to the group .

First of all, let me tell you, from my experience on this group and

elsewhere, you're lucky you're the one in denial and that your husband

isn't. Usually, it's completely the opposite. So if your husband is

supportive enough to research it, you are extremely lucky.

Second, don't ever let anything we say here lead you to disregard your

doctor's instructions, but one thing I can tell you is that having the tea

or cola-coloured urine is not a big deal, by itself. You're usually not

really losing as much blood as it looks like when that happens. In fact, it

seems like people who do get the coloured urine occasionally do better with

IgAN in the long run than people like me who only ever have microscopic

blood in the urine. I never did once, as far as I know, the whole 25+ years

I had IgAN, but that didn't stop me from eventually ending up on dialysis.

Miracles can happen, and you can find yourself unexpectedely stable for many

years, but usually if your neph predicts one or two years until dialysis,

that's the likely scenario. Look, I'm on hemodialysis myself. It's not

something I desired, but life goes on. It's not the end of the world. You

can read about my hemodialysis experience from day 1 in the IgAN Cafe.

Access it via www.igan.ca , and then go in the Dialysis & Transplant forum,

and then Pierre's dialysis updates. There are a couple of other dialysis and

transplant diaries in there too.

Good luck for the future, and take care of yourself.

Pierre

I'm new

> Hi everyone, this is my first time on. I just want to introduce

> myself. My name is and I was just diagnosed with IgAn about a

> month ago, I've since then started on B'P meds, iron pills,

> persantine, etc. My grandma, who has breast cancer, saw my pill

> planner the other day and said it looked alot like hers. I am only

> 30 years old, and I'm little frustrated because I'm so tired all the

> time. Lee, the nurse practitioner, is working on getting me pre-

> approved through insurance for this rion/epo shot. I hope it comes

> through soon. I ama registered nurse doing home health case

> managing stuff and I am finding it hard to make it through a full

> day's work. The worst part so far, is being tired all the time.

> That, and we'd been trying to start a family for 2 years before all

> this happened and now the doctor is telling us we shouldn't get

> pregnant at least until I am on dialysis. The good news is that he

> anticipates this happening in one to two years. The bad news i s

> that he sees this happening in 1-2 years, and I am so not looking

> forward to the lifestyle upset of dialysis. I had asked the doctor

> if I needed to let him know if I got sick, and he says yes. Right

> now I have a fever of 99.4 and have become a bottomless pit of snot.

> HaHa! But I feel like that is hardly enough fever to call him

> about. EXCEPT that mu urine is tea-colored. I read that the first

> signs of hematuria and kidney problems is coffee-colored urine. I

> wouldn't exactly call it coffeee-colored, bu tea-colored. I am

> thinking this is a bad sign, but I don't know what Dr. O could do

> about it even if it is hematuria. I guess I mostly just want someone

> to osay hi to me. My husband said I was in denial because he's done

> more research on the internet than I have. He's signed me and

> himself up for the group, but this is the first time I've written

> in. I go from being ok and dealing with it to sad and tearful. I

> guess that's normal too. I told the doctor that if I'd had this kind

> of luck with the lottery, I'd really be doing all right. He agreed.

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

Welcome to the group .

First of all, let me tell you, from my experience on this group and

elsewhere, you're lucky you're the one in denial and that your husband

isn't. Usually, it's completely the opposite. So if your husband is

supportive enough to research it, you are extremely lucky.

Second, don't ever let anything we say here lead you to disregard your

doctor's instructions, but one thing I can tell you is that having the tea

or cola-coloured urine is not a big deal, by itself. You're usually not

really losing as much blood as it looks like when that happens. In fact, it

seems like people who do get the coloured urine occasionally do better with

IgAN in the long run than people like me who only ever have microscopic

blood in the urine. I never did once, as far as I know, the whole 25+ years

I had IgAN, but that didn't stop me from eventually ending up on dialysis.

Miracles can happen, and you can find yourself unexpectedely stable for many

years, but usually if your neph predicts one or two years until dialysis,

that's the likely scenario. Look, I'm on hemodialysis myself. It's not

something I desired, but life goes on. It's not the end of the world. You

can read about my hemodialysis experience from day 1 in the IgAN Cafe.

Access it via www.igan.ca , and then go in the Dialysis & Transplant forum,

and then Pierre's dialysis updates. There are a couple of other dialysis and

transplant diaries in there too.

Good luck for the future, and take care of yourself.

Pierre

I'm new

> Hi everyone, this is my first time on. I just want to introduce

> myself. My name is and I was just diagnosed with IgAn about a

> month ago, I've since then started on B'P meds, iron pills,

> persantine, etc. My grandma, who has breast cancer, saw my pill

> planner the other day and said it looked alot like hers. I am only

> 30 years old, and I'm little frustrated because I'm so tired all the

> time. Lee, the nurse practitioner, is working on getting me pre-

> approved through insurance for this rion/epo shot. I hope it comes

> through soon. I ama registered nurse doing home health case

> managing stuff and I am finding it hard to make it through a full

> day's work. The worst part so far, is being tired all the time.

> That, and we'd been trying to start a family for 2 years before all

> this happened and now the doctor is telling us we shouldn't get

> pregnant at least until I am on dialysis. The good news is that he

> anticipates this happening in one to two years. The bad news i s

> that he sees this happening in 1-2 years, and I am so not looking

> forward to the lifestyle upset of dialysis. I had asked the doctor

> if I needed to let him know if I got sick, and he says yes. Right

> now I have a fever of 99.4 and have become a bottomless pit of snot.

> HaHa! But I feel like that is hardly enough fever to call him

> about. EXCEPT that mu urine is tea-colored. I read that the first

> signs of hematuria and kidney problems is coffee-colored urine. I

> wouldn't exactly call it coffeee-colored, bu tea-colored. I am

> thinking this is a bad sign, but I don't know what Dr. O could do

> about it even if it is hematuria. I guess I mostly just want someone

> to osay hi to me. My husband said I was in denial because he's done

> more research on the internet than I have. He's signed me and

> himself up for the group, but this is the first time I've written

> in. I go from being ok and dealing with it to sad and tearful. I

> guess that's normal too. I told the doctor that if I'd had this kind

> of luck with the lottery, I'd really be doing all right. He agreed.

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

There certainly are some doctors who are a little insensitive or who have

very poor communication/people skills, no doubt about that. Luckily, most

aren't like that.

Pierre

RE: I'm new

> Thanks, Phyllis,. Yes, I do have a nephrologists. Yes, I have had a

> biopsy. There are 2 doctor's that kinda tag team. The first time I went

I

> saw Dr. P. He was awful. I went alone because I didn't know what was

gonna

> happen. I'd been referred by my G.P well, he comes in and looks at my

> chart, frowns, and says, " Mrs. Busby, you have PROFOUND renal failure and

I

> want to admit you to the hospital first thing Monday morning . " Well, I

> just started bawling. I was still on the profound part, and he was off on

> biopsy right away. Then he got mad cause I was crying. What a butt!

> Anyway, the doctor who actually did the biopsy was much nicer, and more

> respectful, and he answered all my questions. Anyway, it's gonna take

some

> time to place all of you folks, but I am delighted to meet you.

>

>

[Guest guest]

There certainly are some doctors who are a little insensitive or who have

very poor communication/people skills, no doubt about that. Luckily, most

aren't like that.

Pierre

RE: I'm new

> Thanks, Phyllis,. Yes, I do have a nephrologists. Yes, I have had a

> biopsy. There are 2 doctor's that kinda tag team. The first time I went

I

> saw Dr. P. He was awful. I went alone because I didn't know what was

gonna

> happen. I'd been referred by my G.P well, he comes in and looks at my

> chart, frowns, and says, " Mrs. Busby, you have PROFOUND renal failure and

I

> want to admit you to the hospital first thing Monday morning . " Well, I

> just started bawling. I was still on the profound part, and he was off on

> biopsy right away. Then he got mad cause I was crying. What a butt!

> Anyway, the doctor who actually did the biopsy was much nicer, and more

> respectful, and he answered all my questions. Anyway, it's gonna take

some

> time to place all of you folks, but I am delighted to meet you.

>

>

[Guest guest]

There certainly are some doctors who are a little insensitive or who have

very poor communication/people skills, no doubt about that. Luckily, most

aren't like that.

Pierre

RE: I'm new

> Thanks, Phyllis,. Yes, I do have a nephrologists. Yes, I have had a

> biopsy. There are 2 doctor's that kinda tag team. The first time I went

I

> saw Dr. P. He was awful. I went alone because I didn't know what was

gonna

> happen. I'd been referred by my G.P well, he comes in and looks at my

> chart, frowns, and says, " Mrs. Busby, you have PROFOUND renal failure and

I

> want to admit you to the hospital first thing Monday morning . " Well, I

> just started bawling. I was still on the profound part, and he was off on

> biopsy right away. Then he got mad cause I was crying. What a butt!

> Anyway, the doctor who actually did the biopsy was much nicer, and more

> respectful, and he answered all my questions. Anyway, it's gonna take

some

> time to place all of you folks, but I am delighted to meet you.

>

>

[Guest guest]

" " I understand the tiredness, there are some days that I feel like I can't

get out of bed and then there are days that I feel like there is nothing

wrong with me. It is very frustrating because I 99% of the time I don't look

sick so in my case alot people in my life act like I am faking it or want

sympathy, but I try to just ignore it and just stay around people that do

try and understand during the days I don't feel like myself. " "

Man Jill I could have written these words myself! For a while early on my

husband was giving me the line " Well just don't start using this IgA thing

as a crutch. " I still want to rip his head off for that one. Now 6+ months

into this thing and he realizes that I push myself hard so I can seem like

I'm functioning at a normal level when in reality some days I want to pass

out for many hours. Now his line is " Do what you can and don't push

yourself too hard. " So I guess some of those people in your life who think

you are faking it can realize you aren't.....eventually. I like your

attitude of hanging out with people who will give you support on those nasty

days....I call my mother-in-law on my really " off " days. She is a wonder

woman and has been there for me since day one of diagnosis going so far as

to call me nightly for the first few months (when my hubby was at work) just

to make sure I was o.k. I can't tell you how many nights I cried for hours

on the phone with her...and I can't imagine what her phone bill was like!

Amy

[Guest guest]

" " I understand the tiredness, there are some days that I feel like I can't

get out of bed and then there are days that I feel like there is nothing

wrong with me. It is very frustrating because I 99% of the time I don't look

sick so in my case alot people in my life act like I am faking it or want

sympathy, but I try to just ignore it and just stay around people that do

try and understand during the days I don't feel like myself. " "

Man Jill I could have written these words myself! For a while early on my

husband was giving me the line " Well just don't start using this IgA thing

as a crutch. " I still want to rip his head off for that one. Now 6+ months

into this thing and he realizes that I push myself hard so I can seem like

I'm functioning at a normal level when in reality some days I want to pass

out for many hours. Now his line is " Do what you can and don't push

yourself too hard. " So I guess some of those people in your life who think

you are faking it can realize you aren't.....eventually. I like your

attitude of hanging out with people who will give you support on those nasty

days....I call my mother-in-law on my really " off " days. She is a wonder

woman and has been there for me since day one of diagnosis going so far as

to call me nightly for the first few months (when my hubby was at work) just

to make sure I was o.k. I can't tell you how many nights I cried for hours

on the phone with her...and I can't imagine what her phone bill was like!

Amy

[Guest guest]

" " I understand the tiredness, there are some days that I feel like I can't

get out of bed and then there are days that I feel like there is nothing

wrong with me. It is very frustrating because I 99% of the time I don't look

sick so in my case alot people in my life act like I am faking it or want

sympathy, but I try to just ignore it and just stay around people that do

try and understand during the days I don't feel like myself. " "

Man Jill I could have written these words myself! For a while early on my

husband was giving me the line " Well just don't start using this IgA thing

as a crutch. " I still want to rip his head off for that one. Now 6+ months

into this thing and he realizes that I push myself hard so I can seem like

I'm functioning at a normal level when in reality some days I want to pass

out for many hours. Now his line is " Do what you can and don't push

yourself too hard. " So I guess some of those people in your life who think

you are faking it can realize you aren't.....eventually. I like your

attitude of hanging out with people who will give you support on those nasty

days....I call my mother-in-law on my really " off " days. She is a wonder

woman and has been there for me since day one of diagnosis going so far as

to call me nightly for the first few months (when my hubby was at work) just

to make sure I was o.k. I can't tell you how many nights I cried for hours

on the phone with her...and I can't imagine what her phone bill was like!

Amy