Re: Re: New

[Guest guest]

I am 44 and had a TAH 10/19/00

My uterus was the size of a 5 month pregnant women. I didn't get exact

measurements due to the number of them, inside full and out side numerous is

what I was told. I didn't look for another other options. I had been that

route back in 1992 when I had a uterine wall ablation (I believe is what he

called it) This worked well for about 4 years. Then pain started in again and

I began to spot every 3-6 months. By 1998 the spotting started happening

every month and was painful. It wasn't a regular period, never was. Finally

in June 2000 I went to the doctor and found the above. During surgery for the

hysterectomy they found a large growth consistent with a blood clot on my

bladder the size of a cantaloupe. This showed up on the sonogram but due to

it's location it looked like it was on the uterus. My uterus was totally

infected along with my tube which was also collapsed. In the report they gave

the measurements for all the tumors. My ovary also had lesion and was the

abnormal in size. I only had the one ovary as I lost the other one back in

1982 from what I was told a ruptured cyst that I almost died from. I had to

have 3 pints of blood replaced. I was told I actually lost 5.

So I am glad that I chose the hysterectomy. Had this growth ruptured I would

not have made it the hospital. It would have been immediate. Had I chosen the

myomectomy, they would have had to stop and do the other anyway. It was just

a mess. It's sad when the medical world moves slow and you have to go through

so many processes to get to the bottom of things. One could die.

[Guest guest]

I am 44 and had a TAH 10/19/00

My uterus was the size of a 5 month pregnant women. I didn't get exact

measurements due to the number of them, inside full and out side numerous is

what I was told. I didn't look for another other options. I had been that

route back in 1992 when I had a uterine wall ablation (I believe is what he

called it) This worked well for about 4 years. Then pain started in again and

I began to spot every 3-6 months. By 1998 the spotting started happening

every month and was painful. It wasn't a regular period, never was. Finally

in June 2000 I went to the doctor and found the above. During surgery for the

hysterectomy they found a large growth consistent with a blood clot on my

bladder the size of a cantaloupe. This showed up on the sonogram but due to

it's location it looked like it was on the uterus. My uterus was totally

infected along with my tube which was also collapsed. In the report they gave

the measurements for all the tumors. My ovary also had lesion and was the

abnormal in size. I only had the one ovary as I lost the other one back in

1982 from what I was told a ruptured cyst that I almost died from. I had to

have 3 pints of blood replaced. I was told I actually lost 5.

So I am glad that I chose the hysterectomy. Had this growth ruptured I would

not have made it the hospital. It would have been immediate. Had I chosen the

myomectomy, they would have had to stop and do the other anyway. It was just

a mess. It's sad when the medical world moves slow and you have to go through

so many processes to get to the bottom of things. One could die.

[Guest guest]

In a message dated 02/05/2001 8:28:53 AM Eastern Standard Time,

lygibson@... writes:

>

Thank-you for the help!!!!

[Guest guest]

Bonnie,

Not a year ago, 4 months ago. I feel good. I had other complications I didn't

address that extended my recovery. Doing better though then before the

surgery.

I wonder if the ablation caused all these problems. It's like my uterus just

died and became a habitat for infection. It was also full of tumors inside

and out. All of which when biopsied came out benign.

My doctors were so insistent prior to surgery that fibroids aren't painful.

Maybe so but there was more going on then fibroids and they didn't see it. He

was the 3rd doctor I had been too in 1 1/2 years. Was the pain all in my

head? I was beginning to think I was a hypochondriac. First dr. said

everything was fine (Although I just about went through the ceiling during

the exam) but if I wanted a sonogram I could have one. Problem, I have to pay

for these-no insurance. So I opt not to since he said everything felt okay

and my spotting was probably my liner growing back. Dr. #2 couldn't do a

pelvic so he did the ultrasound ($200 at half price since I was a cash

patient) how nice of him. He found all the fibroids. But then sent me to a

back specialist for the lower back pain because it wasn't related. This

doctor dx (MRI $1100) me as degenerative disk disease. Okay now we know why

the back hurts. Did what he said but no relief. Then he tried premaline to

regulate my period. I wasn't really having one. Why regulate I ask. He said

it will help. I fought this treatment off for 2 months and then was told if I

don't want to do what he prescribes then I can't expect to get to the bottom

of this. Of course it didn't work. It did make me yell at people for no

reason. I was a Jekle and Hyde. Still no period not even spotting. Finally we

went to the third doctor and said this is what we want-take it out! He was

the one that found I had a heart problem as well. We had to get this taken

care of before the anesthesiologist would put me under. Almost died during

the angiogram-crashed 3 times and ended up in ICU. They kept putting all this

stuff into my veins, twice it came out of a box with the nuclear symbol. Now

I'll probably get cancer 5 years from now. Anyhow, finally cleared for

surgery and they open me up to do an Abdominal Hysterectomy and wala here's

this growth. When they tried to cut it out I guess they couldn't get it to

stop bleeding. Took them 6+ hours and 2 pints of blood to get everything

done. Still having pain but it's not pelvic and sex if pain free. Fibroids

may not be painful by themselves but when they attach to things or attach

thing to things or push against other things IT HURTS.

TAH 10/19/00

[Guest guest]

Hi,

I don't seem to see a name,but it doesn't matter.I'm 49 and have a mess,not the

exact details of

yours,but a big mess nevertheless.I had a UAE Oct.1/99 It was unilateral and I

had a year of

complications with 2 hospitalizations.I'm better now,but the fibroids are still

there and are still

big.I am presently reviewing all my otions including hysterectomy.This was done

a year ago? How are

you now?

Its a very sad story,and I'm very sorry for your suffering.The medical world is

moving much too

slowly in finding better treatment for the fibroid disease.I hope that the

little girls we see now

won't have to go through this.

But if you feel up to telling me more I would appreciate it.

Best,

Bonnie

h2oyarlott@... wrote:

> I am 44 and had a TAH 10/19/00

>

> My uterus was the size of a 5 month pregnant women. I didn't get exact

> measurements due to the number of them, inside full and out side numerous is

> what I was told. I didn't look for another other options. I had been that

> route back in 1992 when I had a uterine wall ablation (I believe is what he

> called it) This worked well for about 4 years. Then pain started in again and

> I began to spot every 3-6 months. By 1998 the spotting started happening

> every month and was painful. It wasn't a regular period, never was. Finally

> in June 2000 I went to the doctor and found the above. During surgery for the

> hysterectomy they found a large growth consistent with a blood clot on my

> bladder the size of a cantaloupe. This showed up on the sonogram but due to

> it's location it looked like it was on the uterus. My uterus was totally

> infected along with my tube which was also collapsed. In the report they gave

> the measurements for all the tumors. My ovary also had lesion and was the

> abnormal in size. I only had the one ovary as I lost the other one back in

> 1982 from what I was told a ruptured cyst that I almost died from. I had to

> have 3 pints of blood replaced. I was told I actually lost 5.

>

> So I am glad that I chose the hysterectomy. Had this growth ruptured I would

> not have made it the hospital. It would have been immediate. Had I chosen the

> myomectomy, they would have had to stop and do the other anyway. It was just

> a mess. It's sad when the medical world moves slow and you have to go through

> so many processes to get to the bottom of things. One could die.

>

>

>

[Guest guest]

,

I am so sorry and I'm sure the group is feeling that way too-You have been

through hell and back,my

dear.You desrve a big,BIG 'round of applause for your courage.

I think, that fibroids can cause pain.I had a pelvic,last year(I have

had others since) but

referring to this one particular one-Man I was Zowwwweeee for days and days.It

really was bad pain.I

think also if you look at the archives you will find posts from others who have

had fibroids/pain.

Do you mind more questions?

I wondered about the infection?In the uterus?Did you have any symptoms of

infection? Like did you

have a fever or chills or an eleveated White Cell Count?Sometimes that's hard to

know if you don't

get a copy of the blood results,but did you have a fever?

I also wondered about that collection of blood found during surgery.I have a

collection on the psoas

(sp?) above the kidney.It is not fibroid related,they tried to drain it but

failed because it was too

thick in consistency.

I hope I'm not being too invasive in my questions.I do not know what the box

with the nuclear sign

would be in ICU but we have a few RNs and some very smart (and funny) people in

our group and maybe

someone else does.You should have no worries at all at this point,after what you

have been through

and if you want to know what that nuclear sign was there is most certainly a way

to find out and it

does not mean you will fall victim to cancer.

Thanks, for the sharing of your story.I hope your recovery just gets

better and better.

Best,

Bonnie

h2oyarlott@... wrote:

> Bonnie,

>

> Not a year ago, 4 months ago. I feel good. I had other complications I didn't

> address that extended my recovery. Doing better though then before the

> surgery.

>

> I wonder if the ablation caused all these problems. It's like my uterus just

> died and became a habitat for infection. It was also full of tumors inside

> and out. All of which when biopsied came out benign.

>

> My doctors were so insistent prior to surgery that fibroids aren't painful.

> Maybe so but there was more going on then fibroids and they didn't see it. He

> was the 3rd doctor I had been too in 1 1/2 years. Was the pain all in my

> head? I was beginning to think I was a hypochondriac. First dr. said

> everything was fine (Although I just about went through the ceiling during

> the exam) but if I wanted a sonogram I could have one. Problem, I have to pay

> for these-no insurance. So I opt not to since he said everything felt okay

> and my spotting was probably my liner growing back. Dr. #2 couldn't do a

> pelvic so he did the ultrasound ($200 at half price since I was a cash

> patient) how nice of him. He found all the fibroids. But then sent me to a

> back specialist for the lower back pain because it wasn't related. This

> doctor dx (MRI $1100) me as degenerative disk disease. Okay now we know why

> the back hurts. Did what he said but no relief. Then he tried premaline to

> regulate my period. I wasn't really having one. Why regulate I ask. He said

> it will help. I fought this treatment off for 2 months and then was told if I

> don't want to do what he prescribes then I can't expect to get to the bottom

> of this. Of course it didn't work. It did make me yell at people for no

> reason. I was a Jekle and Hyde. Still no period not even spotting. Finally we

> went to the third doctor and said this is what we want-take it out! He was

> the one that found I had a heart problem as well. We had to get this taken

> care of before the anesthesiologist would put me under. Almost died during

> the angiogram-crashed 3 times and ended up in ICU. They kept putting all this

> stuff into my veins, twice it came out of a box with the nuclear symbol. Now

> I'll probably get cancer 5 years from now. Anyhow, finally cleared for

> surgery and they open me up to do an Abdominal Hysterectomy and wala here's

> this growth. When they tried to cut it out I guess they couldn't get it to

> stop bleeding. Took them 6+ hours and 2 pints of blood to get everything

> done. Still having pain but it's not pelvic and sex if pain free. Fibroids

> may not be painful by themselves but when they attach to things or attach

> thing to things or push against other things IT HURTS.

>

>

> TAH 10/19/00

>

>

>

[Guest guest]

,

I had a high platelet count for months after my UAE.It can be a sign of a lot of

things.You may want

to look up platelets on the Net.It is the factor in the blood that allows

clotting.A high count means

too much clotting.I was put on coated aspirin 650mgs a day to avoid clots.I

think you should ask

about that measure-just to be sure.But I would only do this under doctor's

supervision.Tarry stools

can come with iron and other foods but sometimes indicates bleeding.They should

have done tests on

the stools.

I went through many,many months of frustration with the people who did the UAE

who would not hear

either.Imagine leaving me at home running 103 for 7 weeks and saying this was

post embo syndrome.Yes

you can run fever with post embo,but there should be follow up after such a long

period of time.

Anyway,believe it or not I just ditched these SOBs about two weeks ago and am

now gathering

another " team " as it were to help me make up my mind about what to do next.

If you aren't satisfied.If questions are unanswered,then you must find

responsive medical treament.

As far as records go.Is there a patient representative or some form of internal

workings you can

appeal to?

You should have all the tests and records.A lawyer may not be bad if other

methods fail

Best,

Bonnie.

h2oyarlott@... wrote:

> Bonnie,

>

> I don't mind at all. Questions have gotten me to where I'm at today. The

> problem is the answers. No one wants to tell me anything.

>

> I did have a low grade fever for months. As for the stools, they were very

> tarry. I did bring this to their attention a number of times but they weren't

> hearing. Also I had a hard time peeing. It didn't hurt or burn it coming out

> it was more a pain in my belly and only got worse toward the end of

> urination. Again I told them this and they said that probably the fibroids

> are pushing up against my bladder. I even requested a urinalysis and that

> came up clear. So they ruled out a bladder infection.

>

> Since the heart thing my blood has not been normal. They have been concerned

> with the platelet count which reached highs of 728,000. It has gone down to

> 420,000. They'll do another test this month. I am anemic and something about

> my white cells but I was so overwhelmed with shock over the platelets I don't

> remember what he said. If my platelet won't stay down then they will do a

> bone marrow test. I can't;t help but think and they won't tell me yes, is all

> these things they are putting in my veins aren't causing my blood problems.

>

> The nuk box wasn't in the ICU. It was after my stress (which they had to do

> chemically because there was no way I could do the tread. TO MUCH PAIN. And

> they still weren't alarmed) test the week prior and again the next morning.

> They came in put this stuff in me and then an hour or so later came and got

> me for an x-ray. I do know that it was used for the x-ray to track it through

> my blood. I have never known anyone who had to have this done before. The

> results of the stress test is what brought about the angiogram.

>

> The pathology report doesn't write things in layman terms. I don't remember

> if they gave it a name. I'll look tonight.

>

> I got all the records from the hospital when things were getting really scary

> and there was no record of me being in ICU and the Cardiologist wrote I

> handled the procedure well. We found all this out during my pre op two weeks

> after. The hospital had my file and there was nothing. So we have raised our

> flag and are waiting for them to get the proper documentation. Next step will

> be a lawyer, I guess.

>

>

> 44 TAH 10/19/01

>

>

>

[Guest guest]

In a message dated 02/08/2001 1:04:19 AM Eastern Standard Time,

spotandzac@... writes:

<< am in pain a lot and my stomach feels bloated and im tired

> I dont fit any of the profiles for being a candiate for this, and

no one seems to think its a big deal.

> I just dont even know where to begin with what questions to ask

what treatment to investigate. I would like to eventually have kids and

> not to be in pain >>

You need to see a reproductive endochronologist ASAP. You need to have an

ultrasound and see what your treatment options are. DO NOT DELAY!!!

If you want to preserve your fertility, you must see a specialist. If your

Dr does not take you seriously change doctors. But see the specialist as

soon as you can get an appointment.