Also see Fact
Sheet - Endometriosis
Could it be endometriosis?
Signs and symptoms
Laparoscopic outcome, endometriomas
Endometriosis, fibroids, Lupron
Recurrent pain
Return of pain
Painful intercourse
Pregnancy while being treated for endometriosis
Fertility therapy
Pain, fertility therapy
Question: I am 39, have an eight-year-old
son. I have always had painful menstrual cycles since the
onset at age 12. I have been trying to conceive over the past
year and have not been successful. I have used the ovulation
prediction kits and still no success. My cycles have varied
from 26-30 days. I have always been 28-30 days each month.
I never know from month to month if the pain is going to be
unbearable to the point of vomiting from the pain. I do not
know if I should have an exam to find out if I have endometriosis.
If the doctor finds endometriosis, is this treatable and are
there chances that I could have another child?
Comment: It is commonly stated that approximately 30% of infertile
women will have endometriosis to some degree. The triad of
painful menstruation (dysmenorrhea) painful intercourse (dyspareunia)
and painful bowel movements (dyskezia) are the most common
reported pain abnormalities. The more pain, the more likely
is the diagnosis of endometriosis. Abnormal pain associated
with menstruation or ovulation is endometriosis until proven
otherwise. While ultrasound scan cannot detect the scarring
or implants of endometriosis, it may yield a high suspicion
if a persistent cyst is found. An endometrioma, often called
a chocolate cyst because of the enclosed endometrial fluid,
is often associated with some degree of ovarian compromise
and its removal usually is needed. While history and pelvic
exam may suspect the diagnosis of endometriosis, it is only
by direct viewing at surgery that the definitive diagnosis
is made. It is quite possible that you have endometriosis
and have had for a long time. At age 39, your age may take
precedence over this diagnosis. It is important that a blood
test on cycle day 2-3 be obtained to measure egg stores. While
a laparoscopy may be in order, there may not be the time for
medical therapy if a primary objective is fertility. This
is an excellent example of the need for a good working relationship
with your fertility specialist and a discussion of how your
objectives can be best put into a plan. Sst
Question: I have been trying to conceive for two years now
and recently I read an article about dysmenorrhea. I feel
that I have some signs of this, like painful periods that
bring me to tears. I also read that it can cause infertility.
How true is this? Should I discuss this with my doctor before
getting fertility tests done?
Comment: The two signs/symptoms of endometriosis
are pain and inability to conceive. You seem to have both.
Menses associated with changes in bowel pattern/intestinal
pain and/or painful intercourse are two more cardinal symptoms
of endometriosis. Individuals who have endometriosis often
have family members with endometriosis, have longer heavier
menses with shorter menstrual cycles and have not used oral
contraceptives. About 30% of infertile women have endometriosis.
Endometriosis may be suspected by history, and further supported
by pelvic exam and/or ultrasound showing an endometriotic
cyst. The diagnosis can be made only by surgical evaluation.
This is most often at the time of a laparoscopy. A laparoscopy
may be indicated solely on the basis of pain. If a laparoscopy
is performed, I suggest choosing a surgeon experienced in
the diagnosis and treatment of endometriosis and one prepared
to treat the abnormal findings at the time of surgery. The
vast majority of the cases of endometriosis can be treated
by laparoscopy. A video or detailed photographic record should
be made for further reference. It is also useful to have a
hysteroscopy at the same time to exclude uterine problems
as a cause of infertility and pain. In women of childbearing
age, I always suggest the tubes should be tested to ensure
that they are open (chromotubation). Whether to have a laparoscopy
in your particular case requires a detailed discussion between
yourself and your physician.
Question: I just recently had a laparoscopy after trying to
conceive for 18 cycles. I had an endometrioma on each ovary
and adhesions pulling my ovaries down and they were stuck
to the back of my uterus. Luckily my tubes were fine. They
were able to free everything up and get all the endometriosis
out. I feel very blessed. I did not conceive the same cycle
as my lap nor was I expecting to since I had so much healing
to do. My question is what are my chances of conceiving now?
Are there any statistics on success after having a laparoscopy?
Also, my RE thinks I may have another endometrioma developing
on my right ovary. He saw this only three weeks after my surgery.
Could it be possible that it could already be growing back?
Also, could it be scarring from my surgery where he removed
the endometrioma? This scares me. Please help. Do I have any
chance of conceiving?
Comment: In terms of fertility, I look
at endometriosis almost as two separate problems. One is an
active disease the results form the cyclic hormonal regulation
of endometriotic lesions the so-called "powder burn"
areas, "red" lesions, "clear" blebs and
possibly the endometrioma, sometimes called a chocolate cyst.
The other component of endometriosis, is "fixed"
disease; that is, permanent scarring resulting from the active
processes of endometriosis. The fixed disease is not responsive
to hormonal regulation, or medical therapy. Each of these
processes can cause infertility. In minimal and mild cases
of endometriosis, fertility may or may not be affected. Moderate
and severe endometriosis is clearly associated with infertility.
Perhaps this above argument of fixed disease can be made for
pelvic pain in your case. First the bad news. Endometriosis
is usually not "cured". With what sounds like at
least moderate (stage 3 and possibly severe stage 4) endometriosis,
"all" the endometriosis is never removed. One of
the most serious manifestations of endometriosis, both in
terms of pain and fertility is the endometrioma. It is virtually
impossible to effectively treat an endometrioma without some
destruction of the ovary. After surgery the ovary often adheres
to the pelvic sidewall and may limit its motility and possibly,
ovulation Repeat scarring after surgery is common. Our hope
with surgery is that the resulting adhesions are much less
severe than those removed. Now, the good news is that endometriosis
can be effectively treated. Our therapeutic goals are to move
individuals from intolerable to tolerable pain patterns and
from infertility to fertility. A realistic expectation from
surgery alone is about 25-33%. Chances of fertility are dependant
on the amount/location of endometriosis, how much and how
well the endometriosis was removed. Our major treatment options
for endometriosis are laparoscopic surgery and GnRH analogs
such as Lupron. Use of Lupron can be effective in reducing
the amount of endometriosis and should be considered depending
on the amount of endometriosis remaining and pain. Lupron
use is hardly mandatory. Sometimes, a pregnancy is achieved
in the first several cycles after surgery. It is also very
good news that both tubes are open. If there is an additional
problem of ovarian dysfunction/lack of ovulation, the situation
becomes more complicated. If there is advanced endometriosis,
ovulation problems and especially if there is and additional
male factor, I am usually relatively quick to move to IVF.
sst
Question: My wife is 40 year old, and in July 2000 she had
a laparoscopy. The doctor told her she had endometriosis and
fibroids and she needed surgery. She had the surgery to remove
as much as possible. The doctor told us that all the fibroids
were removed except one. We were told the best course of action
would be to use Lupron depot injections for six months (after
surgery). Since then she has not had any periods except for
one drug-induced menses (after a month of birth control pills)
but she still didn't ovulate. In my recent research regarding
Lupron depot, I have discovered there are cases of women not
menstruating for up to 12 months or longer, and that it's
U.S. FDA-approved for use BEFORE surgery only. What are the
long-term effects of this drug? My research indicates that
the FDA has only approved its use to shrink fibroids before
surgery. Our goal is to have a baby, but it appears to be
impossible since she is not back to her normal (menstrual/ovulation)
since the surgery July 2000 due to her uterine lining being
too thin (per sonogram) from the effects of this drug. She
even experienced menopause at 40! We were only informed from
the doctor to experience a couple of months of this but this
has not been the case, and we are concerned of her ability
to conceive now or if ever. We would appreciate your professional
opinion. Did our doctor misuse this drug? When will she be
able to regularly ovulate again and possibly conceive again?
Now our doctor wants to induce daily injections to promote
follicle growth and/or ovulation. Is this just a waste of
our time/money or should we wait until the long-term effect
(however long that is?) of this drug is out of her system,
or will the one fibroid possibly grow back?
Comment: Lupron is a good tool for reduction in fibroid size
and treatment of endometriosis. It can be used either before
surgery, after surgery, or both. Its use must be by consensus
of opinion of physician and patient after weighting the specific
therapeutic objectives. At 40, age becomes a significant factor
to include in all decisions about fertility promotion. With
Lupron use, the period of induced menopause and recovery period
must be weighed against the expected reduction in fibroid
size and/or amount of endometriosis. It usually takes about
4 weeks for a depot injection to be completely cleared from
the system and then an additional 4 weeks for the first menstruation.
If there has been over 3 months since the last injection,
a blood test to measure FSH and estradiol can determine whether
menopause has occurred and the egg stores remaining. This
is a critical determination before aggressive ovulation induction
therapy is undertaken. Depending on the desires of the individual
couple, I believe that aggressive therapy is indicated after
age 38. sst
Question: I had a laparoscopy for endometriosis in Jan 2000,
and lesions were found on both ovaries. Six months after the
laparoscopy I began having severe pelvic pains which occurred
only on waking and have increased from once a month to two
or three times a week. It feels like I wake up with cystitis.
I go to urinate but then the pain is really intense starting
near my ovaries and ending up above the center of the pubic
thatch. I need to have a bowel movement, but it is so painful
it feels like cystitis of the bladder and bowel at the same
time. My back spasms and I am unable to sit/stand. The pain
is excruciating. It takes about 20 minutes to go to the bathroom
each time and I end up having to complete one bowel movement
in three or four visits as I can't stay sitting on the toilet
for long. I have had my urine tested, and there is blood in
it, which is invisible to the naked eye. All UTI tests are
negative and I am waiting for results for an ultrasound of
the kidneys. Does this pain sound relate to endometriosis?
I was told it could be irritable bowel syndrome, but all other
sufferers say it is not confined to mornings only. If it is
endometriosis, what can I do to ease or stop this happening?
Comment: Yes it does sound like endometriosis. The lesions
of endometriosis are small "sores" that are chronically
"picked" by the ups and downs of normal hormonal
rhythms. These lesions produce large amounts of prostaglandins
and tissue factors that cause inflammation and pain. Over
time scars are formed as the body attempts to heal itself.
Both the active lesions (so called "powder burns"
and “blebs”) as well as the more longstanding
scars that form can cause pain. Most associate endometriosis
with period pain (dysmenorrhea), pain with intercourse (dyspareunia)
and overly painful ovulation. However often overlooked are
the symptoms of bowel pain (dyskezia) and alteration of bowel
function around menses that are also universal findings. Less
often, but still common is bladder pain/spasm. It is incredible
how many patients pass, or are passed, from doctor to doctor
with symptoms of "irritable bowel disease" and "interstitial
cystitis" when the real culprit is endometriosis. Certainly
the bowel and bladder are irritable if covered with endometriosis.
Lupron is excellent for treatment of acute active lesions
of endometriosis and may be a good choice in your case. The
scarring is correctable only by laparoscopy.
Question: I have been diagnosed with endometriosis and have
also had trouble conceiving a second child. I have been on
Lupron shots (3.75 mg) for 4 months now. I was one week late
in getting shot #4 (35 days) and during that 5th week I experienced
bad cramping, certainly not as painful as before the Lupron
shots, but painful enough. My question is this: if it only
took one week for the endometriosis pain to return, is Lupron
doing me any good? My doctor told me that treatment for 4-6
months might provide some short term relief from the pain;
specifically, that it may take up to a year for the endometriosis
to build back up and cause pain, but she made no guarantees.
If my experiences with shot #4 showed pain after a lapse of
only one-week, will two months of additional treatment make
any difference?
Comment: Endometriosis is a chronic disease for which there
is no cure. Its symptoms are primarily pain and infertility.
Often with a six-month treatment course, relief is for 18
months to 3 years. It is worrisome that you had pain when
the injection was delayed. This may mean that there has been
escape form suppression. In some cases a higher dose may be
needed. I usually obtain an estradiol and luteinizing hormone
level just before one of the injections to make sure there
is full suppression. A possibility to repeat the laparoscopy
to evaluate the effect of therapy. I sometimes do this before
Lupron therapy is complete to evaluate and treat any residual
disease. Still, you should have had a relatively good effect
on pain relief after 4 months. sst
Question: I have endometriosis and for last 3 months have
had pain with intercourse. What
could be causing pain?
Comment: Painful intercourse is a typical symptom of endometriosis.
The endometriotic implants are often found on the ligaments
at the back of the uterus that surrounds the upper portion
of the vagina. Other symptoms of endometriosis include painful
or frequent bowel movements around the times of menses and
painful periods. Fertility medications can worsen endometriosis
by increasing estrogen levels. sst
Question: Can I get pregnant while being treated for Endometriosis?
Are there any special concerns?
Comment: It really depends on what type of therapy you are
using. I usually recommend trying to become pregnant either
in the cycle of or immediately after any surgery. Obviously
pregnancy is unlikely while using oral contraceptives. If
Lupron or one of the GnRH analogs is being used, there is
a chance of pregnancy in the first month, but the chances
are markedly diminished after the ovaries are fully suppressed
which is the objective of the therapy. If a pregnancy is achieved
on Lupron, there is no strong evidence that it will harm the
fetus. Still many recommend protection against pregnancy.
It is controversial whether medical therapy alone improves
fertility, but it can certainly help with pain control. sst
Question: I am 30 years old and my husband and I have been
trying to conceive for four years! I had a laparoscopy 3 years
ago and laser surgery for moderate to severe endometriosis.
My doctor told us to wait 6 months after the surgery to see
if we would get pregnant naturally. Then I went on drug therapy
and finally a year after surgery tried induced ovulation that
failed. Now we just tried IVF once and that failed as well.
I feel the endometriosis has come back and need another surgery
to remove adhesions and scar tissue before trying IVF again.
I have severe pain at times and believe I have adhesions between
my uterus and bowels. Would this prevent the embryos from
implanting? Do you think a second surgery could possibly improve
the chances of IVF working? Please help! We only have 2 more
tries with IVF before throwing in the towel.
Comment: The scoring system used by the American Society for
Reproductive Medicine (ASRM) ranks the degree of endometriosis
as minimal, mild, moderate, or severe (Stages I-IV). This
scoring system is considerably more accurate in predicting
fertility than pain. Some have argued that fertility is not
decreased with minimal and mild endometriosis, but is often
significantly decreased with moderate and severe endometriosis.
Success with IVF is significantly lessened in those with severe
endometriosis. A part of this reduction may be attributed
to an adverse effect on tubal function, but most important
is the issue of reduced the egg stores, whether by the effect
of endometriosis in/on the ovary itself, or surgery on the
ovary to remove endometriosis. At 30 and with moderate endometriosis,
your chances of IVF success should be quite good. There is
no conclusive proof that endometriosis alters implantation.
The decision about surgery should be based on the pain pattern,
or presence of endometriotic cysts, perhaps even more than
infertility. It seems logical that the more normal the pelvic
anatomy is, the greater the likelihood of success. sst
Question: My husband and I have been trying to conceive for
2 years. We have gone through IUI five times - three times
on clomiphene and twice on injectables. I had a laparoscopy
and they found stage 2 endometriosis. After the lap we did
two cycles on IUI with injectables. Since then I have been
having side pain on my lower right side. It is not all the
time, and not all that painful, just annoying. My question
is, could this be from all of the hormone therapy I have had
(even though I am off now except birth control) or could the
endometriosis be coming back that fast?
Comment: Yes. It all "could"
be from the hormonal therapy. Ovulation inducing drugs often
cause ovarian cysts. It is also possible that they can worsen
endometriosis by increasing estrogen levels during the cycle
of use and stimulating growth of endometriosis. The pain should
be lessened on oral contraceptives, if it were due to fertility
promoting drugs. It seems more likely that this is endometriosis
pain. Endometriosis is never "cured"; it is only
treated. In some cases the endometriosis is difficult to detect
and completely treat. Pain relief is variable after laparoscopy,
but the endometriosis is probably less important in terms
of fertility. Given that the endometriosis was stage 2 and
that the laparoscopy was performed recently, I suggest pushing
more toward fertility than endometriosis therapy. The time
may be approaching to consider IVF, not so much because of
the absolute need, but because less aggressive therapy has
not been successful. sst
Also see Fact Sheet -
Endometriosis
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