hanging by a thread
From: chelle (onibla729@aol.com)
Fri Jan 7 19:23:25 2005
I started with the female problems right after I got
My period (15yrs), bad cramping, periods not coming,
back pain and so on. The first doctor I went to put
me on birth control, it just got worse. They decided
to do an scope, and found a cyst No problem, but a few
months later it was back, along with about 30 more pounds.
Several scopes later, cysts kept coming back, weight got
bigger, no one knew what was wrong. My hormone levels were
always so high especially testosterone. I tried many doctors,
no one knew what was wrong. I was frustrated and one mth
just ignored the pain, and a cyst ruptured and I started
to hemorrhage, rushed to the hospital, they did surgery,
said I had really bad scar tissue and would never have kids.
I dealt with it for a while more, in pain, periods stopped
altogether. I was 25 by this time, and was having a difficult
yr, in a lot of pain. One night it got so bad I had to go
to the ER, they said I had a cyst time for more surgery, I
was woke from surgery to them telling me I was pregnant.
I was in shock, as were they, they told me my tubes were
completely collapsed from the scar tissue, how I got pregnant
they did not know, but they said I am sure it will not last
we were in your tummy rooting around and cutting so be
prepared to lose it. I guess it was meant to be, all be it
a horrible pregnancy, in pain, no definite due date due to
the fact I never got periods, early labor, bed rest, pain
so bad I thought my insides were going to rip out.
I had to have my daughter by c-section due to the scarring
would not let her drop. I was so scarred on the inside they
had to clean Me up and I never seen my daughter till 4 hrs
after she was born.
When she was 3 mths old the cyst came back, they removed
an ovary, then a doctor told me I had policystic ovarian
diesese. I had never heard of it and he told Me it goes
undiagnosed very often. I asked how to make it stop, he
said there is no way, the have theroys, and I did try a few
and nothing worked every mth a new cyst came, and either
just kept growing, or ruptured unless removed. I said take
it all out, stop the hormones and it will stop, they said yes
( wow was that a lie) I had a total hysto when I was 29 I had
another cyst 3 mths later. How is this possible I asked them.
They said perhaps some ovary tissue got left inside due to the
adhesions. Ok now what off to surgery to find it.
This surgery was very bad, the doc cut my bladder and did
not know it till 2 days after the surgery I was almost
dead before they realized what happened, got an abscess,
had tubes everywhere, but he swore he gt it. Nope 3 mths
later it was back, along with a urinoma ( cyst filled
with urine due to the cutting of My bladder) it crushed
a urter, had to have a stint, more hospital time. Since
this operation I have had 2 more cysts, they have drained
them via x ray, due to the scar tissue. I lost My job due
to all the hospital time, and hurting. I did find a doctor
who told Me I had ovarian remnet syndrome.
I had to go on another insurance, and this doctor is not
covered. I am once again in so much pain I can hardly
function, I went to er twice, they seen My cyst, gave me
shots sent me away saying go see primary you need attention,
but we can not do it here you are not DYING!!!! I went
and got a new obgyn, he said I need surgery, referred Me
to another and he said no way not doing it, will not ever
drain it. Then tells me NO ob will touch me as I do not
have any female organs, even thou My hormones are off the
chart even though I am supposed to be in menopause. I have
a cyst that has grown 6 cm in less than 2 weeks. Now I am
back to square one, I hurt so bad some days I can not function,
but I try for My daughters sake.
She is six and all she sees in mommy hurt. I am 32 yrs
old and I feel like 60. They say do not get addicted to
the narcotics as they write out the prescription, and then
say I do not know what to tell you other than you are high
risk go see a oncologist he might can help you. I can not
lay flat because the pulling is so bad, I can not goto the
bathroom without laxatives, and when I do it hurts so bad.
I am ready to give up, I have been dealing with these issues
now for the better part of 16 yrs. It has taken My life
away, and now they say no one can help Me, not even drain
the cyst. Well now that I rambled I am glad I am not alone
because I was told for yrs it is in My head, and even thou
your family and friends say they know, they truly do not.
I sit here, tear running wondering what do I do next???
I feel so alone.
Where do I go next? I can not afford to go see this doc
who specializes in ovarian remnt syndrome at the mayo
clinic, and I have an appt to see an oncologist next week,
but I think that will be pointless as well.
Anyone have advise for Me, something, My hope for ever
being ok and normal is gone.
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