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Endometriosis Awareness
I
decided to do a page on endometriosis for a couple of reasons...
one is it has affected my cousin and the other is women with PCOS
are at an increased risk for developing cancer of the endometrium
(lining of the uterus) later in life. Women with PCOS experience
the monthly build up of the endometrial lining, however, the
lining is not sufficiently shed because of the infrequent or
nonexistent menstrual periods. The lining continues to build and
can increase the risk of developing endometrial cancer.
Endometrial cancer is very rarely associated with endometriosis,
occurring in less than 1 percent of women who have the disease.
When it does occur, it is usually found in more advanced patches
of endometriosis in older women and the long-term outlook in these
unusual cases is reasonably good. So I am trying to learn as much
as possible about it, to better understand it... since my luck
with doctors never tends to be good.
Endometriosis affects millions of women worldwide. Endometriosis
is a progressive disease that tends to get worse over time and can
reoccur after treatment. The exact cause of endometriosis is
unknown. Endometrial tissue forms outside the uterus in other
areas of the body, such as on the ovaries, fallopian tubes, the
ligaments that support the uterus and other organs in the pelvic
cavity. This tissue then develops into small growths, lesions, or
tumors. These growths are usually benign (noncancerous) and are
simply a normal type of tissue in an abnormal location. Cancers
that arise in conjunction with endometriosis appear to be very
rare.
Some symptoms of endometriosis are:
heavy and/or irregular bleeding
pain
and/or extreme menstrual cramps
pain during or after
sexual activity
infertility
affects 30 to 40 percent
fatigue
gastrointestinal
symptoms - diarrhea, constipation and/or nausea
lower
back pain with periods
painful
and frequent urination
frequent
yeast infections
Some women with endometriosis have no symptoms.
I
have had irregular periods since I started getting them back when
I turned 17 years old... the only time I had
"regular
periods" was when I was on birth control pills... which I found
out later wasn't
a good thing to do cause then you are only getting a period cause
of the pill and not necessarily cause your body is functioning
correctly. As soon as I went off the pill, I went to getting 2 to
4 periods a year. For years I would ask my gyn a ton of
questions... but I was always brushed off saying that I should be
grateful that I don't
get a period every month. I would always say but it has to go
somewhere, can't
it back up inside of me... and of course I was looked at like I
had two heads. I think what bothers me most is that this was a
"women's
hospital"
that I was going to and for years and years she just fluffed me
off that I was "bothering"
her with my nonsense. So I settled with getting a period a couple
of times a year and just carried on with my life, thinking that
must be "normal"
for me then. I started dating another guy in my life, and we
decided that we wanted to try and have a baby together... so I
started to pursue the issue again with what was going on with my
cycles. At the same time, I had a period from hell to put it
mildly. My "normal"
periods were never really bad, they were always 5 to 7 days long
but never heavy. I started my period like a
"normal"
one for me and then after 2 days I started bleeding huge clots and
it was just pouring out of me. Whenever I would stand up, it
gushed out; when I walked, it gushed out, it was just awful. I
have had several periods like that one in the last couple of
years... yet all I have ever been told is take Ibuprofen to help
"slow
down"
the blood flow.
As far as pain goes, I have had pain off and on but mine always
tends to be more before and/or after a period and not so much
during. It also varies from intensity most of the time I have a
dull pain on my right side like down by my ovaries... other times
I have this intense sharp stabbing pain that has me doubled over
in pain. Of course every time I have mentioned it to a doctor,
they think nothing of it. One of the reasons it is so difficult
to diagnose endometriosis is because of the wide range of
symptoms. Don't
let the doctors tell you that it's
a "fact
of life",
keep searching till you find a doctor that will do something for
you and investigate and get to the root of your problems.
Pelvic Pain is associated with endometriosis and not always felt
during a woman's
period. It can in fact, occur at any time throughout the month...
because the pain isn't
cyclical, or "in
tune"
with their menstrual cycle, doctors will sometimes just dismiss it
altogether. These different sensations and types of pain can come
and go throughout the day.
Some of the types of pain descriptions felt could be:
dragging
sensation
pulling
sensation
constant
dull ache
throbbing
sensation
deep
heavy sensation
One other symptom is ovulation pain... many women suffer from
intense pain during ovulation when they have endo. I am not
actually sure if I even ovulate every month... but I do know that
I have had some months where it feels like someone is taking a
knife and stabbing me over and over... and then other times I don't
have anything at all. I would say that I don't
ovulate every month being the fact that I haven't
ever been able to get pregnant and I have been trying that for at
least 13 years. One thing that I want to stress though that I
think is the biggest hurdle I have had with any of the doctors
that I have seen, is that my first husband had a very very low
sperm count. Whenever I talked to the doctors and they found out
that, they never pursued it further with me to find out why I wasn't
having a period every month, why I would have pain off and on or
anything... I have always been
"brushed
off"
and made to think that there is nothing wrong with me... which I
know that isn't
true. I have been to several gyn's,
to a reproductive endocrinologist and to a regular endocrinologist
and I still hit brick walls with them at times. I have gotten
some answers but there are still things that are "unexplained"
that I want answers to.
Endometriosis has been reported in about 30 percent of infertile
women. PCOS is the most common cause of lack of ovulation and a
leading cause of female infertility. The leading theory on the
origin of endometriosis is a back flow of blood from the uterus
through the tubes and out into the pelvis (retrograde
menstruation).
Although your doctor can often feel the endometrial growths during a
pelvic exam, and your symptoms may be telltale signs of
endometriosis, no competent physician would confirm the diagnosis
without performing a laparoscopy procedure. If you have been told
that you have endometriosis, but haven't
had a laparoscopy procedure done, insist on getting one. Often, the
symptoms of ovarian cancer are identical to those of endometriosis.
A laparoscopy procedure also indicates the location, extent, and
size of the endometrial growths and will help your doctor better
guide you in treatment decisions and family planning. The procedure
is a form of minor surgery. After a general anesthetic is
administered, your abdomen is distended (expanded) with carbon
dioxide gas to make the organs easier to see. A tiny incision is
made, and a laparoscope is inserted into it. By moving the
laparoscope around, your surgeon can check for any signs of
endometrial tissue outside the uterus. Pelvic ultrasound and
laparoscopy are also important in excluding malignancies (such as
ovarian cancer) that can mimic endometriosis. Unfortunately, no
blood tests can accurately diagnose endometriosis.
Women with endometriosis who are struggling to get pregnant only
have two choices: ovulation induction and assisted reproduction
techniques. Ovulation induction involves using medications (GnRH
agonists, follicle-stimulating hormone, luteinizing hormone,
clomiphene citrate) with or without intrauterine insemination to
increase fertility. Intrauterine insemination is placement of
the fertilized egg directly into the uterus. Research has
shown that ovulation induction with or without intrauterine
insemination can increase fertility in women with
endometriosis-associated infertility. In-vitro fertilization
has not yet been supported with very much research in women with
endometriosis.
I
had an HSG (hysterosalpingogram - an x-ray test where dye is
injected in the uterus and tubes to determine their condition) done
on April 22nd, 2003... that was my first "stepping stone" to finding
out what is going on. My results were that my uterus appears
normal in size and shape. My left tube appeared normal without
any obstructions. My right tube had no evidence of "free
spillage" of the dye... so further testing was recommended to
determine what the blockage could be!
I
am scheduled for a laparoscopy on June 17th, 2003... I will update
this page after I get the results from that surgery as to what
appears to be my problem... WISH ME LUCK!!!!
Well I had the laparoscopy done... here is what was stated in the
Operative Findings... "The patient has omental adhesions to the
anterior abdominal wall and anterior pelvic wall. The stomach
appeared normal. The bladder is adherent over the uterus.
The left fallopian tube could be identified, but was extremely
tortuous. The left ovary had multiple peritoneal cysts next to
the left ovary and the left ovary was adherent to the left pelvic
side wall. The right ovary could not be clearly identified due
to extensive adhesions. The right fallopian tube could not be
clearly identified due to extensive adhesions. The left
fallopian tube was patent to indigo carmine dye while the right
fallopian tube was not obviously patent to indigo carmine dye."
So
basically I am a mess... they are not really stating that the
adhesions that I have throughout my whole insides is endometriosis
though. They aren't sure why I have the adhesions though as I
have never had any surgeries or anything before to cause such an
extensive amount of "damage" to my organs. My left tube "appeared normal in size and shape" actually was twisted
and very snakey... my right tube you can only see very little of it
before it is completely covered by adhesions.
The
doctor ordered that I have an ultrasound done too... which was done
in July 2003... as I have a cyst that he saw on my right side that
he wanted to have a better idea of that. Their impression was
"Right ovary dominated by a cyst that is consistent with either an
endometrioma or a hemorrhagic cyst." My right ovary measured
5.9 x 5.2 x 3.5 cm in size and it is dominated by a cyst measuring
4.9 x 4.4 x 2.8 cm. I am scheduled to have that redone again
before I see a Reproductive Endocrinologist to see if it has grown
or changed any since this time around.
The
doctors only recommendation was to see a Reproductive
Endocrinologist and see if he thinks I even have any chance of being
able to do Invitro Fertilization. I called for the appointment
in August 2003 and the first one available to see this doctor isn't
until January 2004. So now its back to just sit and wait
phase, as always!!
October 2006 - WOW... sorry I haven't updated
this page... actually to see what happened with the Reproductive
Endocrinologist go to my
IVF Journal
page. Now let me back up a minute... on January 4th, 2005, I
had another laparoscopy done for my persistent right ovarian cyst.
What they ended up doing was Extensive lysis of adhesions,
enterolysis and fimbriolysis; right ovarian cystectomy/right
salpingostomy and an endometrial biospy. The results from the
Endometrium Biopsy was Proliferative phase Endometrium... and the
results from the Right Ovarian Cyst Wall/Biospy - Benign paratubal
cyst and fragment of benign fallopian tube. No definite
ovarian parenchyma identified. The cyst that was removed was
consistent in size as the one that was removed in 2003.
In August of 2006, I had THREE cysts that have
been persistently living inside of me... good grief!! So we
talked about options... my option was do a hysterectomy... Dr.
Namkoong said that he wanted to avoid that one because of my age,
being too young to have it done; and two being I am such a mess
inside and the adhesions have "fused" together my ovaries to my
vital organs... he would really rather not have to open me up again
and put me in such a high risk surgery. So his suggestion was
to give me a shot of Lupron which is good for three months... which
what it basically does is throws your body right into menopause...
so I had that done in the beginning of August. The end of this
month, I am scheduled to go in and have an ultrasound done to see
how the cysts look, or if they maybe have disappeared on their own
from the Lupron shot. Either way, he wants me to have another
three month shot of Lupron in the beginning of November and
hopefully by the end of the 6 months, the cysts will have completely
disappeared on their own and surgery won't be needed. If that
is the case, then he wants to put me on Birth Control Pills to see
if that helps with not "making" anymore cysts. If not, then he
will go in and do a laparoscopy and just remove the cysts and then
put me on birth control... so we'll see what happens. Its
always never ending fun with me!! =(
Endometriosis Association
Endo
Awareness & Info Page
Endometriosis.org
MENDO - group for men only to discuss issues
of Endo
A Woman's Guide to
Overcoming Endometriosis
Dr Cook's Endometriosis
and Pelvic Pain Information Center
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