Also see fact
sheet - PCOS
and Nutrition
Dr Thatcher is the author of “PCOS:
The Hidden Epidemic” Perspective Press, 2000. This 500-page
book is presented in a question answer format covering hundreds
of PCOS questions and all aspects of PCOS from birth until
after menopause. The book should be available through bookstores
and through on line suppliers.
Irregular bleeding
Ovarian pain
Hair loss
Erratic bleeding, pregnancy loss
PCOS without the typical signs
Trying naturally
No success after ovarian drilling
Injectable drug therapy for PCOS
Hypothyroidism, low progesterone
Metformin therapy without insulin resistance
After clomiphene and metformin failure
Depo-Provera
Metformin in teens
Eulexin (flutamide)
Clomiphene
Low-carbohydrate diet
Fertility after pill use
Age
Besides clomiphene and oral contraceptives
Cycle regulation without drugs
Finding a physician
Confusion on starting therapy
Determining insulin resistance
Metformin
Fertility after infertility
Birth defects
Metformin in breast milk
Family history
Acne without other signs of PCOS
Adding fertility agents to metformin
Long term consequences
Question: I have PCO and have always
had cycles from 34-42 days that are normal for me. Recently
I have been working out down at the gym, as well as taking
EPO, Vitamin C, Folic Acid, and one St. John’s wort
tablet a day. While at the gym last month I experienced a
mid-cycle bleed. It occurred after doing some weight training
(not abdominal) and I bled just for a couple of hours. My
period came at day 29 that month. The same thing has happened
again this month. Last week while at the gym I had a bleed
for that day (day 15 of cycle). The blood looks bright red
and is fluid. I feel as though something has burst and was
wondering whether this is just a cyst that bursts or actual
true ovulation. This has never happened to me before. I am
about to have IVF starting in Dec/Jan and I don’t want
to have anything else to worry about!
Comment: Bleeding, or at least spotting at time of ovulation
sometimes occurs. It occurs with the sudden fall of estrogen.
It may be a positive sign of improvement with your exercise
program. It also might be another indication that you still
don't ovulate. I would use an ovulation predictor kit and
/or temp chart to see if you are making progress toward ovulation.
Ovation detection kits and temperature charts are relative
useless your cycles are 26-32 days. Longer or shorter and
it can be assumed that ovulation is not occurring in a timely
fashion an intervention is indicated. sst
Question: What are the symptoms of polycystic ovaries? I have
pain on my right side and I have more pain when I have been
sexually active. Do you have any suggestions what it could
be?
Comment: The most common symptoms/signs of PCOS are obesity,
excessive hair growth/acne, and menstrual cycle disturbances/infertility.
Many women will have cycles over 35 days in length. Although
not commonly listed, I have found that pelvic pain to be common
in PCOS, but not usually just with intercourse. Pain with
intercourse may be a simply result of pressure on the ovary,
a sign of an ovarian cyst, or sign of endometriosis. It could
be normal or abnormal. sst
Question: I have recently been diagnosed with polycystic ovary
syndrome. I am 19 years old. Aside from being a smoker, my
doctor told me I am healthy. My weight is slightly above normal,
and I suffer from no excessive body hair problems. She did
mention some male-pattern baldness occurring, which seems
to be the worst of my worries. I have read that this ailment
affects obese women, but do not feel this applies to me. I
want to know what caused this to happen to me? Also, what
are my chances of being able to conceive?
Comment: PCOS is a genetic condition that has many manifestations.
If you look closely you probably will find other family members,
either your mom's or dad's side, with similar problems of
hair thinning, Elevated levels of male hormone, weight problems,
period problems (often cycles over 35 days) and a tendency
to develop diabetes are the most common of problems of PCOS.
Not all with PCOS have all symptoms. It is reasonable to look
more deeply into the diagnosis of PCOS by hormone measurements,
especially androgens. Our treatment strategies are limited
for hair loss, also called androgenic alopecia. Treatment
that may help in the hair loss may include oral contraceptives,
anti-androgens such as spironolactone, and minoxidil (Rogaine™).
Minoxidil has shown to be somewhat effective, but long-term
use is necessary and expensive. Hair loss restarts after the
medication is stopped. “Ponytails” hair bands
and longhair styles that put additional stretch stress on
the hair should be avoided as well excessive brushing and
blow-drying. sst
Question: I lost a baby in earlier this year. I was four and
a half months along. We had tried about a year and a half
to get pregnant with her. Since March, my periods have been
inconsistent. I’ve been told I might have might be polycystic
ovaries, so I’ve been recently given a medication to
try and help that. Anyway, I hadn't had a period for two months
and finally, I started (on my own). It was very light for
the next four days. So light in fact, I wasn't sure if it
was even a period. On the 5th day I started bleeding more
consistently, still light bleeding but constant. Around the
11th day of my period I called my doctor to see if it was
ok to bleed that long and I was told as long as the bleeding
is not excessive then it was ok and my body has a lot of build
up because I hadn't had a period in two months. My question
is this: I am now on day 15 and I’m still bleeding.
It's a little heavier the last few days, but not severe at
all. I want to know how long is too long for this? Also, I
wanted to try and conceive this month and I don't know how
my ovulation will work. Will I ovulate once I stop bleeding
or will I ovulate regardless of the bleeding? I’m hoping
that we can try this month but don't have any idea of when
I could try if at all.
Comment: After 2 weeks of bleeding, it is time you contact
your physician again. You are probably right that there is
a build-up of the lining. Sometimes a prolonged bleeding may
mean that the uterine lining is not being completely lost
and some form of hormonal intervention may be in order. I
would think that nothing serious is wrong, but it is time
to move on. Most often you will not ovulate while bleeding,
or if you do, implantation of the embryo may be difficult.
PCOS is a very common cause of irregular cycles as well as
pregnancy loss. It may be reasonable to initiate an evaluation
insulin resistance and if found, therapy. You might be a good
candidate for metformin therapy. sst
Question: I am 28 years old and was recently diagnosed with
PCOS. I became pregnant with my 2-year-old in one week. Before
I went on the pill at age 19 I had never had problems with
my period and there is no family history of any reproductive
or menstrual problems. I am 5'2" and weigh 118 lbs. I
am in good health. My doctor has done many blood tests and
everything has come back good. I have not had a period on
my own in 10 months since I went off of the pill to try for
our second child. My doctor started me on Clomid last month
to try to get me to ovulate. He then did an ultrasound on
day 12 of my cycle and told me that I had not ovulated and
that I had PCOS. I am very confused. Besides the ultrasound
and lack of a period I have no signs of PCOS. Could this be
something else? Also I had a hysteroscopy done about 4 months
ago and that was good also. I don't ovulate, but my doctor
has no idea why. I understand PCOS is a symptom and not the
actual reason for amenorrhea. Is this correct? Could this
be a case that I will just not ovulate/have a period and never
know why?
Comment: First the "pill" did not cause any of the
above problems; in fact, it may have preserved fertility while
you were taking it. Many with PCOS become pregnant in the
first month off the pill. I suggest that pregnancy is attempted
in the first month after stopping oral contraceptives. PCOS
covers a wide spectrum of hormonal disturbances. Not all with
PCOS have the commonly suggested findings of weight, skin
and period problems. Obviously you have period problems and
obviously you do not have weight problems. I am surprised
that all of your blood testing is normal. One diagnostic test
in individuals with your symptoms is a reverse in the LH:
FSH ratio. In PCOS the ratio is usually over 1. Thin individuals
are slightly less likely to have an increase in androgens,
male hormones that also characterize PCOS. If there is a familial
history of diabetes, a glucose tolerance test with insulin
levels may be in order. In the United States many question
whether the diagnosis of PCOS can be made by ultrasound findings
alone, but I believe it is a good diagnostic tool. In one
way it matters less about the diagnosis of PCOS than the fact
that you are not ovulating. Consideration should be given
to the use of ovulation promoting agents, the first line therapy
is usually clomiphene and a higher dose may be needed. We
sometimes put patients on 2 months of birth control pills
then repeat a clomiphene challenge, if high dose of clomiphene
(150 mg) has not been successful. Some cases require injectable
fertility drugs or IVF. sst
Question: I was diagnosed with PCOS 6 years ago. My husband
and I have been trying to get pregnant naturally for the last
2 years. We are in our mid-twenties and would like to get
pregnant naturally if possible. My gynecologist doesn't seem
to want to help us. All she wants to do is load me up with
hormones. Could you give me any suggestions on things we could
do to get pregnant naturally?
Comment: There is excellent evidence that lifestyle changes
such as weight moderation, increased physical activity and
smoking cessation can have significant impact on fertility.
This said, you should avoid rapid weight loss or aggressive
physical activity that may put additional stress on the system
and worsen fertility. We aim for a 10% reduction in body weight
in our PCOS patients who are overweight and suggest a lower
carbohydrate diet. You also should be using 1 mg of folic
acid daily. Once you have done your best on lifestyle, the
next step would be to investigate the possibility of insulin
resistance using a glucose tolerance test and insulin level.
Metformin (Glucophage), while a potent drug for the treatment
of diabetes and certainly not effective in all cases of PCOS,
is not hormonal and does not increase the risk of multiple
births. Some women report that they feel better and weight
loss becomes easier while taking the drug. sst
Question: I was diagnosed with PCOS and have undergone ovarian
drilling. I have been ovulating normally after the procedure,
but have not been able to conceive. My husband's seminal profile
is normal.
Comment: The first question is, are you sure that you're really
ovulating? Regular cycles (28-32 days) are suggestive, but
not conclusive proof of ovulation. Overall the hormonal situation
is improved as evidenced by regular cycles, but maybe not
quite "over the hump." I would add use of an ovulation
prediction kit, basal body temperature chart and a progesterone
test 7 days after you think ovulation has occurred to fully
document ovulation. If ovulation has been clearly occurring
by this group of tests and if the pelvic anatomy was truly
normal except for the polycystic ovaries, I might then try
clomiphene, possibly with an insemination as an empiric trial.
As discussed above, you might also be checked for insulin
resistance. A known risk of ovarian drilling is the formation
of adhesions (scar tissue) around the ovaries and tubes. While
this occurs much less often and the adhesions are less severe
compared with the old ovarian wedge resection procedure, still
they can occur and reduce fertility. sst
Question: I was diagnosed with PCOS seven years ago. I started
Rezulin and had a successful pregnancy four years ago. We
have been trying to get pregnant for the last two years to
no avail. I am 30 years old and currently on 150 mg of Clomid
and 850 mg of Glucophage two times a day. My GYN will only
continue the Clomid one more month and then wants me to go
to a RE and discuss injectables. What are the risks with the
injectables? What are the success rates? Are there any other
options?
Comment: If clomiphene fails, referral to a reproductive endocrinologist
(RE) is a reasonable next step. Gonadotropin injections have
three major disadvantages. First, they are injections. While
relatively simple and painless as injections go, they are
inconvenient. Second, their cost ranges from $40-80 per ampule
and usually 5-40 ampules are used in each cycle. This means
a cycle of gonadotropin therapy ranges from several hundred
to several thousand dollars for medications alone. Third and
most importantly, gonadotropin injections carry a significant
risk of ovarian hyperstimulation and multiple pregnancies.
It is usually suggested that the twinning rate is about 20%
and larger order pregnancies occur in about 5% of cycles.
While cyst formation and abdominal enlargement is common,
some patients develop ovarian hyperstimulation syndrome (OHSS).
Here large amounts of fluid are leaked from the ovaries and
can represent a medical emergency. The success rate is usually
10-25% per cycle.
To avoid the risk of hyperstimulation and multiple pregnancy,
many of our PCOS patients are proceeding directly to a definite
option, IVF, which offers several distinct advantages that
may make it more cost-effective than it might seem initially.
Perhaps the largest benefit, a desire shared by both clinician
and patient, is to evaluate the capacity of the oocyte to
be fertilized. As expected, the chance of fertilization failure
is higher in PCOS patients than in patients with anatomic
abnormalities. Lack of fertilization in one cycle does not
necessarily mean that by altering the stimulating regimen,
or timing, that fertilization will fail in subsequent cycles.
It may be more the environment in which the oocyte develops
than the oocyte itself. An additional advantage is that a
more aggressive approach can be taken toward ovarian stimulation.
With PCOS, hyperstimulation is somewhat less of an issue because
the preovulatory size follicles are aspirated and a limited
number of embryos are replaced. Not only does this decrease
the chance of multiple pregnancies, it reduces the risk of
more pronounced cystic change. I recommend not transferring
over 2 embryos in women under age 35. Other embryos can be
frozen for use in another cycles or for another pregnancy.
sst
Question: I was diagnosed with PCOS and hypothyroidism two
years ago. I have been taking thyroid replacement and metformin
(Glucophage) for the PCOS. I had regular periods for several
months. Now I am back to being irregular and I have been spotting
quite a bit, which I never did before. I am hoping to get
pregnant within the year and now I am discouraged. Do you
think I am low on progesterone? Is the metformin not working
anymore?
Comment: I believe that patients and even doctors often have
a misunderstanding of what a low progesterone level indicates.
For a progesterone level to be valid it must be obtained 7-8
days after ovulation. Ovulation is the key word here. Low
progesterone levels most often indicate either that ovulation
has not occurred, or that there was improper timing of the
blood sample. If ovulation is the problem, all the progesterone
in the world will not increase the chance of pregnancy. Having
said that, progesterone use in one cycle may improve chances
of ovulation in the next cycle and progesterone use may help
in cycle regulation. So, low progesterone levels mean that
we need to concentrate on ovulation, not on progesterone supplementation.
Larger doses of clomiphene may be required, up to 150 mg.
If ovulation is not occurring on 150 mg, a trick that is sometimes
successful is to try two months of birth control pills and
then repeat the clomiphene. If clomiphene is going to work
it usually does so in the first 6 cycles of use. If the above
conservative approach has failed to induce ovulation, the
next step is often gonadotropin injections with a consideration
of IVF. Hypothyroidism and PCOS are both common disorders
so it is not surprising that some individuals will have both.
There is at least one study that suggests that those with
PCOS are more likely to have thyroid antibodies and hypothyroidism.
Make sure that your TSH level is kept within the normal range.
sst
Question: I am currently trying to conceive. I was recently
diagnosed with PCOS and tested for insulin resistance. I am
not insulin resistant. I know that some doctors put PCOS women
on metformin even if they are not insulin resistant. Is metformin
beneficial for these women, and should I ask my doctor about
putting me on it? I've heard that it can alleviate the symptoms
of PCOS, improve egg quality, and won't hurt you even if you
aren't insulin resistant.
Comment: The Internet abounds with testimonials about successful
therapy with metformin in women who have normal insulin levels.
About fifty percent of women with PCOS are insulin resistant.
Diagnosis of insulin resistance can be subjective based on
the type of testing. A fasting insulin level alone cannot
diagnose insulin resistance. Measuring insulin levels during
a glucose tolerance test adds reliability, but is not absolute.
Some women may have insulin levels that are in normal range,
but slightly higher than is needed for proper functioning
of the ovary. If there is associated obesity, signs of hyperglycemia
or a family history of diabetes, I often give metformin a
try on a "why not?" basis. If weight is lost, periods
improved and/or the patient feels better I am likely to continue
it; if not, it is stopped. Perhaps all women with menstrual
cycle irregularity should be given a short trial before progressing
to more invasive therapy such as gonadotropin injections,
or IVF. Regardless, metformin is not approved for use in problems
other than diabetes and the decision for its use should be
individualized after close consultation with a physician.
sst
Question: I have been diagnosed with PCOS and have been trying
to get pregnant for over a year. I do not have any weight
problems. My doctor is currently trying me on metformin and
Clomid (clomiphene). I have just been on Clomid at the 50-,
100-, and 150-mg dose levels and it didn't work. Then I was
on just the metformin, even though no insulin problem was
found. Metformin alone has done nothing. As I said, right
now I am on metformin and Clomid. My doctor has hopes that
"this is it," that this will work. What is the next
step if this does not work?
Comment: At this juncture, treatment protocols become much
more limited. It is a very difficult transition time for both
patient and physician because you are moving into the fast
lane of therapy — more aggressive, more expensive and
more risky. There are generally 3 pathways: (1) gonadotropin
injections, (2) laparoscopy with possible hysteroscopy to
exclude anatomic problems. This may be associated with the
ovarian drilling procedure to improve ovarian responsiveness.
(3) IVF. Some physicians will start by adding small doses
of injections to the clomiphene stimulation. We sometimes
put patients on 2 months of birth control pills then repeat
a clomiphene challenge, if high dose of clomiphene (150 mg)
has not been successful. sst
Question: What are the risks and side effects of taking Depo-Provera
when you have polycystic ovaries?
Comment: Depo-Provera is a relatively good contraceptive agent.
The most positive aspect of Depo-Provera is that it will reduce
the chance of uterine cancer, which is higher in women with
PCOS. There is concern that its use in teens may increase
the risk of osteoporosis later in life. I know of no specific
studies that have addressed this specific issue. Sometimes
Depo-Provera is given to solve problems and it may cause more
problems than it treats. I am not convinced it is a very good
drug for PCOS. The side effect profile is quite long and may
be the same type, but worse in severity compared with those
who do not have PCOS. Depending on the specific objectives
of therapy there may be better alternatives. sst
Question: My 14-year-old daughter has been put on Glucophage
to start menses. How will this help with PCOS? Is it a standard
therapy? She also has Hashimoto's disease.
Comment: I trust that a diagnosis of insulin resistance has
been made and a rationale for metformin use other than menstrual
induction alone has been given. A frequent cause of failure
to start menses by age 14 is PCOS, but this is not the only
cause. Metformin is an insulin sensitizer. It improves the
body's response to insulin so less insulin is required. Higher
levels of insulin can have adverse effects on the ovary, preventing
ovulation and increasing the production of male hormones (androgens).
By improving the body's response to insulin/glucose, ovarian
function and thus menstrual cycles are improved. Use of metformin
for any reason other than diabetes is not "standard"
therapy. Metformin use in teens is becoming increasingly common
with good safety and success. There should be specific reasons
for its use, and periodic monitoring to judge its success.
The issue becomes how long should it be used or when should
it be stopped? These questions have not been answered. PCOS
and thyroid disease share some common symptoms. Both are common
disorders. There is increasing evidence that links thyroid
disease with PCOS, but no proof that one causes the other.
sst
Question: I recently read an article about a woman who had
PCOS and was given the drug Eulexin (commonly used to treat
prostate cancer). It apparently treated her PCOS, and she
lost 90 pounds eating low-glycemic foods. Is this drug therapy
something new? I have not read anything about this before;
could you give me some more information about it with regards
to helping with PCOS?
Comment: Eulexin (flutamide) is a potent anti-androgen that
blocks the action of male hormones on target tissues like
skin. There have been several trials investigating its use
in excessive hair growth, hirsutism. Results have been favorable,
but it is a relatively expensive drug and has a possibility
of liver damage. I do not favor its use when other agents,
such as oral contraceptives, spironolactone, Vaniqa (a cream
that blocks hair growth), and laser therapy are equally or
more effective. It does not cause weight loss and may cause
weight gain. I suspect the woman in the case above had success
not because of the flutamide, but due to her hard work and
weight loss. sst
Question: My doctor performed a vaginal sonogram to diagnose
PCOS. I took Clomid at 50 mg a day and did not ovulate. My
doctor has increased my dose to 100 mg a day and I still have
not ovulated. What is the highest recommended dose of Clomid?
What is the next step?
Comment: It is generally recommended that dosages not exceed
150 mg. It is also suggested that no more than six cycles
of Clomid be used. This is not because of its danger, but
due to its limited effectiveness with repetitive use. sst
Comment: Many with PCOS have success with low carbohydrate
diets. Terms such as glycemic index have been employed to
explain the capacity of certain foods to increase insulin.
I believe that most low carbohydrate diets are mainly calorie
restrictive diets and this is why weight is lost. The goal
should be balanced good nutrition. A reduction of 250 to 500
calories a day in addition to a modest increase in activity
can have very positive benefits for most women with PCOS.
"Diets" are almost always doomed to fail and "yo
yo” dieting can have negative health benefits. The key
is lifestyle changes that can be maintained forever. We usually
aim at about a 10% weight loss as a realistic goal for most.
sst
Question: I was diagnosed with PCOS when I was 19 and was
put on the pill to help regulate my cycles. I am 26 now, and
my husband and I would like to try for a baby. I will be going
off the pill soon. My question is, should I expect my periods
to go back to being very irregular. Also, do women with PCOS
ovulate at all? I don't know what to expect -- and I don't
want to waste time trying to conceive when I should be put
on some sort of medication right away.
Comment: I am a big supporter of oral contraceptives for those
with PCOS who have no contraindications and do not want to
be pregnant. Contrary to what many advise, I suggest trying
in the first month off the pill. The chances of miscarriage
may be slightly higher, but this may be the best chance for
a pregnancy. It is surprising how many women say, "I
had no problems getting pregnant the first time. It happened
the first month off the pill." There may be a rebound
effect and ovulation. I would not worry about temperature
tracking or ovulation detection kits until you have demonstrated
that you will have regular periods. If a period does not begin
after 45 days, it may be reasonable to perform a home pregnancy
test. One of the best ways to regulate periods is with "natural"
progesterone usually as the brand Prometrium™. Evaluation
should be started including tests for insulin resistance if
periods are not regular (26-35 days) after about 3 months.
sst
Question: I have PCOS and we got pregnant using gonadotropins.
My cycles seemed to become more stable after having our son,
and we want to try again. Should we go right back to gonadotropins,
or, since I seem to be having somewhat regular cycles, should
we do something else? Time is an issue. I am 38 now.
Comment: I have two conflicting statements. The first is that
I go back with what has worked in the past. Gonadotropins
would be a good place to start. The second is that with the
new insulin altering drugs and possibly some improvement in
your ovarian function after pregnancy, you might take a less
aggressive first step. Cycles tend to become more regular
in PCOS between 35 and 45, but this is also a period of fertility
decline. Your age is a concern and would cause me to be more
aggressive. One of the first steps in your evaluation should
be an FSH and Estradiol level on cycle day 2 or 3. sst
Question: What is the current thinking on the best treatment
of PCO? The doctors I have seen always recommend either birth
control pills or Clomid (if I want to get pregnant). It seems
like there must be something else out there!
Comment: At least 50% of PCOS appears to have a component
of abnormal glucose tolerance, increased insulin, or insulin
resistance. In part by accident, it was stumbled on that insulin-altering
drugs generally used in the treatment of diabetes were successful
in regulating periods, promoting ovulation and increasing
fertility. These drugs have not received FDA approval for
this use, but have become widely employed. We now have a therapy
that actually treats the cause of PCOS rather than just overpowering
or suppressing it. The principle first line therapy is metformin
(Glucophage), which often has the benefit of weight loss,
but has GI side effects. The second group of drugs includes
Actos and Avandia and directly reduces insulin. The success
of these agents seems to be at least as a good a clomiphene
and a sometimes work when all else fails. Still, insulin altering
agents are not perfect and should be discussed in detail with
your physician and best used after appropriate lab testing.
sst
Question: I have PCOS; however, I am not overweight nor do
I have a facial hair problem, so I went undiagnosed for years.
The only telltale sign was having no regular cycle (perhaps
1-3 periods a year). I conceived my daughter with metformin
(Clomid did nothing for me). Now I want to conceive again.
I'm sure I will have to use Metformin again. My question is,
IS there any way I can get regular fertile cycles back without
the pill or using metformin in the short term? If not, will
this mean that I will never have regular periods?
Comment: Unfortunately, PCOS is for life. The pattern of menstrual
cycles is very individualized and is impossible to predict.
We know that periods tend to become more regular after age
35. Periods often become more regular after pregnancy, but
this didn’t seem to work for you.
Generally, I believe it is better to have periods than not.
One direct and proven benefit of regular menstruation is a
reduction in uterine cancer. An alternative minimalist therapy
that usually does not impede fertility and may promote it
slightly is the periodic use of oral progesterone. This may
be preferred over Medroxyprogesterone acetate that you have
probably used in the past.
In at least one-way, you are lucky that metformin did so well
for you. However, because it worked this may be an indication
of insulin resistance and therefore, you are at higher risk
for type 2 diabetes. Trials are underway to see if long-term
metformin may protect against development of diabetes. We
do not know the answer to this question. Perhaps, you should
not consider metformin only as a fertility agent. A good sit
down with your physician to discuss the options may be in
order. sst
Question: Is there a resource for finding the best local doctors,
who are up on the
latest PCO treatments? Not just for fertility, but to manage
it on an ongoing basis?
Comment: Unfortunately there is no organizational listing
for physicians experienced in treatment of patients with PCOS.
Sometimes several physicians must be interviewed. Good suggestions
are sometimes possible through the chat rooms pf the various
intent sites, (see our links in the learning center). PCOSupport.org,
which also has a listing of physicians self-identified as
having an interest in PCOS. The following is an excerpt from
the chapter in my book “PCOS: The Hidden Epidemic”
that partially addresses this concern.
"Because the symptoms and physical findings vary and
because not every patient presents with the same symptoms,
the diagnosis of PCOS is often missed. Only in the last few
years has medical research been able to make connections between
a metabolic endocrine disorder and disturbances in multiple
body systems. PCOS is challenging to physicians trained to
diagnose and treat specific, well-defined diseases. PCOS patients
enter the physician's office often with a collection of vague
symptoms and with a problem that even when diagnosed the lack
of curative treatments is frustrating. Although all the dots
are there, not every physician is able to connect all dots
that form the image of PCOS. A woman may begin to experience
some symptoms of PCOS at a very young age. She may have been
overweight as a young child and the pediatrician may have
told her mother to simply watch her diet. In her teens, she
may have sought medical help for acne or excessive facial
hair and her dermatologist offered creams or electrolysis
as treatment. In her twenties, perhaps still overweight, she
may have sought help from her gynecologist for irregular periods
and been given a package of birth control pills. In her thirties,
an inability to conceive may have sent her to a fertility
specialist where she was given medication to control ovulation.
Unfortunately, our culture often discriminates against overweight
women. It is a sad fact that many physicians are also prejudiced
against these women, assuming them to be lazy or lacking self-discipline.
These doctors often dismiss these patients, telling them to
simply go home and lose some weight.
Years of seeing one doctor after another while her symptoms
often compound rather than subside are disheartening. There
is the perception and often the reality that valuable time
has been lost while going from one doctor to another. Self-esteem
may drop as weight and frustration rise. Blood tests or ultrasounds
that would lead to a definitive diagnosis of PCOS are not
done. The bottom line is that each of these medical specialists
has treated a small aspect of the problem, but none has put
all the pieces of the puzzle together as PCOS. Physicians
should not consider themselves, nor should their patients
consider them to be infallible. Patients must ask questions
and communicate honestly with their physicians. Confidence
in the capacity to live better with a chronic condition is
one of the greatest tools in the struggle with PCOS. There
may need to be an extensive search to find a doctor that is
truly knowledgeable about PCOS. This physician may be a primary
care provider, but more often will be a gynecologist, endocrinologist,
or reproductive endocrinologist who has experience treating
PCOS and is well informed about new research areas. For women
with PCOS, the decision about whom to choose to provide medical
care is critical both to present physical wellness and long
term quality of health. Seeking a doctor who has a strong
base of knowledge about PCOS and who understands present treatment
is quite a challenge. Many doctors simply do not have the
time to keep up with the latest research about the syndrome,
especially, if they are in a practice where they do not see
large numbers of patients with PCOS. And some doctors, unfortunately,
just aren’t interested in gaining further knowledge
or offering new treatments options. Furthermore, managed care/insurance
providers have a strong influence on what direction many women
take in getting care. For these reasons, the key to being
a smart consumer is to become as educated as possible about
PCOS, and gaining a good understanding of the arena in which
you are seeking care. Being a passive or non-participatory
patient doesn't work with PCOS. In the hands of a less than
knowledgeable or uninterested care provider, there can be
an escalation of symptoms resulting in the development of
diseases such as endometrial cancer, diabetes or possibly
heart disease. Finding quality care is imperative for all
women with the disorder.” sst
Question: I have a preliminary diagnosis of PCOS. I have read
so many contradictory things
about it, and nothing cheerful. I am wondering...is it possible/likely
to get pregnant with PCOS without taking fertility drugs?
I do not believe in them, but it seems that all the women
I encounter with PCOS wind up using something like Clomid
(which some sources say works & others say doesn't really)
to get pregnant. And if it were, what would be a reasonable
timeframe? One year? Three?
Comment First, I recommend that you have a "sit down"
with a physician familiar with both PCOS and infertility to
discuss options. This is usually a reproductive endocrinologist.
It is very difficult to obtain a foundation of information
about either fertility therapy or PCOS from a collection of
life experiences. None of these individuals are you. There
are excellent studies from Australia that suggest that those
with PCOS who are also overweight have an excellent chance
of establishing normal menstruation and pregnancy by lifestyle
alterations alone. As little as a 10% decrease in body weight
associated with a modest increase in physical activity may
be all that it takes. Use of metformin can help in those individuals
with insulin resistance. Clomiphene is a good drug, but not
a great drug. Of course some will say that it works and others
will not because that is the truth. It is about 30% effective
in establishment of pregnancy. The drug is a good first line
therapy. It is relatively easy, safe, and cheap. The chance
of twins is about 5%. Over 70% of pregnancies established
on clomiphene are in the first 4 cycles of use. sst
Question: I have PCOS and my insulin level is 11. Is that
enough of a resistance to be
able to take metformin?
Comment: A fasting insulin level of 11 is not considered elevated
by most. While some use 10 as a cut off level, many individuals
have levels this high and are otherwise normal. Most who are
overweight will have levels over 10. Almost all experts consider
a level of over 20 as abnormal. I personally use 14, but there
is no hard fast rule. When the fasting insulin level is elevated,
that is called hyperinsulinemia. Hyperinsulinemia is a marker
of insulin resistance, but it is not the same as insulin resistance.
There are a variety of tests that are used to measure insulin
resistance. One test is the insulin level obtained during
a glucose tolerance test. Also, what is insulin resistance
anyway? Insulin resistance can be thought of as deafness.
The best way to explain insulin resistance is as the organs
that use insulin grow increasingly “hard of hearing”,
in order to compensate and keep the lines of communication
open the pancreas where insulin is made starts to “speak
loud and louder.” Insulin resistance is deafness, not
to sound, but to the action of glucose and insulin. Now as
to when to be treated. This is a very controversial topic.
Insulin resistance is clearly linked to increased risk of
developing of type 2 diabetes. Insulin resistance is also
clearly related to abnormal ovarian function and increased
levels of androgens. However insulin resistance is not a disease
as such. Some advocate a trial of insulin altering drugs in
almost all those who do not ovulate. Others reserve therapy
for those that have clearly been shown to be insulin resistant.
Pregnancies have been reported after use of insulin altering
drugs, such as metformin, when the insulin levels are completely
normal. This is a decision that is best made in cooperation
with an individual physician well versed in PCOS and insulin
altering drugs. sst
Question: I haven't been officially diagnosed with PCOS, and
I'm neither overweight nor
have excess hair or diabetes, but I've been prescribed metformin
and it made me have a normal cycle for the first time in 16
months (I did not respond to Clomid). My question is whether
the metformin is working for me, do you think it's possible
that I have a mild case of PCOS?
Comment: The experts can’t agree with what PCOS is.
So sure, you could have it. The largest single cause of lack
of ovulation lies along the PCOS spectrum. It seems that about
50% of those with PCOS are insulin resistant and insulin resistance
leads to lack of ovulation. Often insulin resistance will
be missed on the routine lab testing for PCOS. I pay considerable
attention to the ultrasound appearance of the ovaries. I bet
there is an increase in small follicles (cysts) less than
10 mm or an increase in the size of the ovary. The fact that
your cycles are regulated is great news. Hopefully a pregnancy
is not far behind. sst
Question: I've got PCOS and now I'm pregnant with my first
child, with help from the
medicine "Clomid.” Do I have a chance to conceive
without help from medicine in the future?
Comment: Sometimes a second pregnancy will follow the first
without any additional help. It largely depends on whether
ovulation will more likely or more frequently occur. You should
not think that you are either infertile, or that you might
not need additional therapy. The fact that you became pregnant
after clomiphene suggests that your ovulatory disturbance
was not too severe. If you do not want to become pregnant
and have stopped breastfeeding, I usually suggest oral contraceptives.
Do not wait, but try to become pregnant the first month off
the pill. The miscarriage rate may be slightly increased,
but so is the pregnancy rate. Try to keep weight down and
exercise up. This will go a long way toward improving fertility.
sst
Question: Is there an increased risk for birth defects for
my baby since I've got PCO?
Comment: There have been tens of thousands of pregnancies
on clomiphene. The rate of birth defects does not appear to
be increased. Birth defects occur in about 1% of all pregnancies.
I strongly believe that there is an increase risk of miscarriage
with PCOS. There is also an increased risk of pregnancy induced
hypertension (preeclampsia, toxemia) and gestational diabetes.
Each of these can cause major problems with pregnancy. I do
not know that PCOS itself has any DIRECT link with birth defects.
In the past PCOS patients have been so poorly studied in this
area that a conclusion cannot be made. sst
Question: I am currently 8 months pregnant. I have PCO and
conceived while using
Metformin. I've been on it throughout my pregnancy and thankfully
I've had an uneventful pregnancy. I want to know if it is
ok to stay on the metformin while I breastfeed or should I
go off it until I stop breastfeeding. What are the dangers
to the baby of staying on Metformin while breastfeeding?
Comment: Metformin is released in breast milk. Most doctors
recommend not using Metformin while breastfeeding. Although
there is no specific research studies that I know of indicating
that it would be of harm. sst
Question: I am 21 years old. I have had irregular periods
all my life. Then I got on the birth control pill but I got
off of it because of weight gain. Since then my periods have
stayed regular, except for this month where I just have a
lot of spotting. My mother says I may have PCOS because since
getting off the pill, I haven't gotten pregnant yet. My mother
had one child at 19 and then had trouble having any more.
She got on Perganol (HMG) and was able to conceive after that
with no trouble. My sister had a cyst on her ovary removed.
Does any of this indicate to you that I may have PCOS?
Comment: We believe that PCOS is inherited. This means you
may have had the gene for PCOS since before birth. It sounds
like your mom could have easily had PCOS and it sounds like
you may too. The chance of passing from mom to daughter is
probably about 50%. PCOS can also be inherited through the
dad’s side, but there is probably no clue that it is
there other than an increased risk of diabetes in some. The
genetics of PCOS is an important area of present research.
sst
Question: I have not been diagnosed with PCOS and do not have
some of the more definitive symptoms. However, I have struggled
with acne (present on the paternal side of the family) and
increased periareolar hair growth. The hair growth was alarming
to me and happened over a three-year period. I am not overweight
for my height and have regular monthly menstrual periods.
My doctor told me that since I was having regular periods
she doubted that I had PCOS. She further determined my hair
growth was familial. She checked my testosterone and DHEA
level (both results were normal). I asked my mother if she
had hair growth on her chest and she does not. Should I have
a LH: FSH ratio done? Is a pelvic U/S indicated? If I am having
regular menstrual periods, does this mean that I am ovulating?
Comment The strictest diagnosis of PCOS requires both hyperandrogenism,
either by clinical signs or hormonal determination and anovulation,
which usually translates into irregular cycles. The principle
skin signs of hyperandrogenism are excessive hair growth (hirsutism)
and acne. Adult acne is a reasonable reliable indicator of
hyperandrogenism; hair around the nipples (periareolar) is
not unless accompanied by hair in the middle of the chest
and lower abdomen. It seems that in your case there is mild
"clinical" hyperandrogenism without laboratory confirmation.
This occurs in at least 50% of cases. Sounds like it came
to your from your dad’s side of the family. I would
not be at all surprised that the ovaries were also at least
mildly polycystic on ultrasound scan. Oral contraceptives
may help the acne by reducing luteinizing hormone and decreasing
androgens. Even though your laboratory values are normal,
there may be an increased sensitivity of the skin to androgens
and reduction may be of benefit. It is possible that you may
not be ovulating despite regular cycles. This is most important
if fertility is an issue. Whether you have PCOS is in some
ways unimportant. The reason to make the diagnosis is most
importantly a way to explain a clustering of signs and symptoms
and identify health risks. We direct therapy not at PCOS,
but at its signs and symptoms. Of course the diagnosis of
PCOS also may identify with a long-term outlook toward possible
metabolic consequences. The fact that you have regular cycles
and do not have a weight problem probably removes many of
the risks associated with PCOS. It may be of academic interest
to determine the LH/FSH ratio, but it probably would not affect
anything that I have written. As a part of good health maintenance
it may be prudent to have a lipid profile, fasting glucose
and maybe insulin level. If there is a strong family history
of type 2 diabetes even a glucose tolerance test with insulin
levels. This may identify the risk of diabetes and possibly
heart disease and promote life-style changes, even medical
e intervention that might allow a longer and healthier life.
sst
Question: I am 26 and have recently been diagnosed with PCOS.
I have a 16-month-old daughter that was conceived with gonadotropins.
I have been having regular though light periods but have not
ovulated. I am taking 1500 mg of Glucophage a day. How many
cycles should I wait before adding fertility treatment to
the mix? My doctor is in a hurry, but I would like to get
my system in order first and see if I ovulate on my own.
Comment: I usually will try the first clomiphene challenge
between the 3rd or 6th month of metformin depending on the
patient’s wishes. Some individuals who have been previously
clomiphene resistant will ovulate and become pregnant on the
metformin-clomiphene regimen, when neither alone is sufficient.
It is usually the patient and not the physician that is in
a hurry. If you are making positive lifestyle alteration and
are feeling better, plus starting to have regular cycles,
what’s the rush? At 26 and with one successful pregnancy,
your chances for another pregnancy are very high. The drug
companies will make sure that there are plenty of gonadotropins
whenever you might need them. sst
Question: I've never actually been diagnosed with PCOS. But
after reading what I have on the subject, I'm really starting
to wonder whether this may have been the cause of all my past
fertility problems. My question to you is that since I'm now
no longer trying to conceive (I had a tubal ligation done
after our last child), & if indeed I am correct on my
assumption & this is PCOS, how will it continue to affect
me as I get older? I am now 33.5 years old.
Comment: First, I agree that a good case could be made for
your diagnosis of PCOS. One of the most pressing issues about
PCOS is what are its long-term consequences. We virtually
know nothing about this at present and the scattered reports
tend to be conflicting. There are several things we think
we know for sure. PCOS is clearly associated with an increased
risk of type 2 diabetes. Continued vigilance on fasting glucose
levels, possibly even insulin levels may be a reasonable idea.
Much of type 2 diabetes is weight related. It has been difficult
to separate out the adverse effects of weight from other medical
conditions.
PCOS patients also tend to have abnormal lipid profiles and
yearly monitoring with lifestyle and possible medical intervention
with appropriate. There is a real question about heart attacks
and heart s disease. It seems that the risk with PCOS should
be much higher than it actually is. This is still an issue
that requires a considerable amount of research. Both diabetes
and heart disease while may be preventable in part and successfully
treat when identified in the formative stages. There is a
clear association of PCOS with cancer of the uterine lining
(endometrium). This is markedly reduced and possible reverse
with cycles regulation or regular bleeding. Others cancer
such as ovarian and breast do not seem to be increased. Childbearing
and oral contraceptive use is protective against ovarian cancer.
Family history is most important issue with breast cancer.
Routine mammogram and self-examination are strongly suggested.
Colon cancer risk rises with obesity. Cycles tend to become
more regulate after age 35. It is possible that the menopausal
transition is easier with PCOS. Hip fracture and osteoporosis
are very significant health risks to postmenopausal women.
Bone density is greatest and fracture risk appears reduced
with PCOS and is appear be significantly reduces in PCOS.
sst
Also see fact sheet - PCOS
and Nutrition
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