Ask Angie & Evelina! Your questions about PCOS

Q: PCOS and Secondary Infertility

I am trying to find more information specifically about PCOS and secondary infertility and your email/website came up... but when I went into OBGYN.net, I could not find any articles on PCOS AND Secondary infertility... was I just not looking in the right place??? There are LOTS of sites about PCOS and secondary infertility but not about how PCOS affects secondary infertility and my options...
Can you please help me gain more insight into my issue... I had 2 miscarriages last year and hoping to carry the next pregnancy to term. Any help is appreciated!!!
Thank you!!!

A: PCOS is a genetic hormone disorder which is related to diabetes.  PCOS is something you are born with.  Symptoms typically usually start appearing after puberty and in a few cases sometimes not until your 20's or early 30's.  However, because it's genetic, if you have PCOS, it's something you have always had even if you didn't notice any symptoms.

Women with PCOS have difficulty becoming pregnant because the hormones that trigger ovulation are not working correctly.  This does not mean that women with PCOS do not ovulate ever, they just don't ovulate on a predictable 28 day cycle like women without PCOS do.  Ovulation is often sporadic and had to predict making conception difficult.  Women with PCOS also have a slightly higher rate of miscarriage due to problems with insulin levels as well which also makes it hard to maintain a pregnancy.

Some women with PCOS find it easy to get pregnant the first (or several) times.  This is due to being lucky and just timing that ovulation right.  This is why many women do not know they have PCOS or don't find out until they have trouble getting pregnant.  Some women have trouble the first time so they see a doctor and get diagnosed and start treatment right away.  And others don't see a doctor until they have had children and want more and suddenly have trouble.  However, the PCOS was really always there.

After a woman has one (or more) children and then begins to have difficulty conceiving (secondary infertility), it is for the same reasons that all women with PCOS have trouble conceiving...sporadic or lack of ovulation and higher rates of miscarriage. Sometimes PCOS does worsen as you get older, due to age and/or weight gain making it even harder to become pregnant.  Fortunately, there are many treatments available now to help PCOS women become pregnant whether it be the first or tenth time.

For more information about PCOS and infertility (there is even a small section on secondary infertility), check out my book Living with PCOS (Addicus Books, 2000)


P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: What does an Androstenediol-Alpha-Gluucuronide test tell you?

I have PCOS and have been on Spironolactone 200mg per day and Ortho-Novum 1/35 for 3 1/2 years now. At least once per year my endocrinologist draws blood for a full panel of hormone tests. I have found information about all of the tests except for one - it is a test for Androstenediol-Alpha-Gluucuronide. Even from first diagnosis 4 years ago this test has always been normal but this year it is elevated.  On July 10 it was 1075ng/dl and then on July 30 it was 785ng/dl. My endocrinologist doesn't know why it is elevated and wants to wait a month and draw it again to see if it is still elevated. I am wondering what this elevated level might indicate and if waiting is a good thing or if a more aggressive approach should be taken.  Are my concerns justified? What does this blood test truly measure? What can elevated levels of this blood test indicate? Should I be concerned about this? Could this indicate cancer?

A: I am not familiar with this test and it is not one typically done to diagnose PCOS. However, your doctor must be testing it for some reason. I would definitely talk to your doctor as soon as possible about your concerns.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Can you tell what's wrong with me?

I have been seeing a gynecologist on a very regular basis for two years.  My continuing complaint is that I have such irregular periods that at times I have 2-3 normal to heavy periods a month and other times I have spotting most of the month between periods.  I have been on so many different birth control pills that I have lost track of how many different ones have been prescribed.  My prescription has changed monthly at times and at other times every 2-3 months it's changed. None of them keep my periods from coming 2-3 times in the same month.  I have been on a regular regimen of birth control pills for at least 18 months.

I recently discovered that my blood sugar was high from a friend who has diabetes and gave me a blood test.  I am substantially over weight.  I have lower back pains which have gotten more severe over time.  Before the birth control, I had severe acne.  It's still bad but better on the birth control.

A year ago I had an abnormal pap smear.  A biopsy was done that showed the abnormal cells went to but not penetrating the base.  Laser surgery was performed 8 months ago.

I recently learned of PCOS.  It seems like I have most of the symptoms except that instead of not having periods I get them too frequently.  Also my heritage is not Mediterranean.  I am 18 years old. I'm getting nowhere.  Please, can you shed some light?

A: Since women with PCOS all seem to exhibit different symptoms (including some who have painful, frequent periods), the first thing to do is to get an accurate diagnosis. This can only be done by checking your hormone levels by a blood test. Please also read our book, Living with PCOS, or one of the other books about PCOS to learn more about this disorder.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Can we conceive without the use of fertility drugs?

I have PCOS and my husband and I are trying to conceive a baby without the use of any fertility drugs. Do you have any suggestions for us?

A: Many women with PCOS conceive on their own. However, they key to to find out if and when you are ovulating so you can time intercourse with when you are ovulating. While “normal” women ovulate on predictable 28-day cycles which comes out to 12 times a year, women with PCOS often go months or years without ovulating and no egg means no pregnancy. If you find out you are not ovulating, then you need to talk to your doctor about how to get you to ovulate.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Who can help me with my PCOS if I am NOT trying to conceive?

My name is Alexandra. I have PCOS but I am not trying to conceive now. I understand it is only when you are trying to conceive a gynecologist can be of help. Since I am not trying to conceive now can you tell me the expert who can really deal with PCOS?

A: You might want to try seeing a general endocrinologist or a reproductive endocrinologist who does not specialize only in infertility. Also, a good gyn should also be able to help you as well. Most doctors now realize that PCOS is not just a fertility disorder. If you are not happy with your doctor, try another.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Am I unable to conceive because of my health history or do I have PCOS?

My name is Vikki and I am 20 years Old.  I have been trying to conceive for over two years now, and until recently the doctors have not taken my problems seriously. I have just read up on polycystic ovaries and I would count it as a possible cause. I think you would know more on this subject than me though. Basically when I was 16 I had a miscarriage because I was at that time an alcoholic, then for the next two years I was a crack and heroin addict and a prostitute. When I cleaned up I was fortunate enough to be clear of AIDS, Hepatitis C, D & B, however I did have VB and chlamydia which was treated straight away.  However, I do not know when I caught the disease. Now myself and my boyfriend of 3 years are desperately trying for a child. All my life I have had irregular periods and heavy bleeding.  After reading the material on PCO, I realize that I do have some of the symptoms such as heavy bleeding, and darker browner blood than normal menstrual blood.  I assure you that I will tell my doctor about this, however I would like to know your opinion on this subject. I am now going through the first investigative stages of fertility treatment and as you can probably imagine I am very scared. What do you think?

A: 80 percent of women with irregular periods have PCOS. They only way to know for sure whether or not you have PCOS is through blood tests to check your hormone levels. It is important to mention that just because you have PCOS does not mean you will not have any other factors that will affect your fertility. Your complicated history (specifically alcohol and drug abuse) might also hinder you getting pregnant.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Does PCOS affect the viability of my eggs?

I have dealt with PCOS for twenty-five years.  I have been trying to conceive for over ten of those years.  We finally gave up and now I am pregnant.  I became pregnant last August-a year ago- and the baby died in December.  I am  once again pregnant and I am excited and very afraid all at once.  My question:  Since I have had PCOS for so long and my ovaries produce so many cysts, what do you think the viability of my eggs would be?  It seems this would be a problem with the eggs being damaged or old.  Can you share some information about this?  I am also wondering if people with PCOS have been proven to have a higher percentage of children with disabilities.  Is there a difference?

A: All women (whether or not they have PCOS) have a decrease in egg quality as they age, especially after age 35 which means it is often harder for women to become pregnant as they age. While it may make it harder for you to ovulate, PCOS itself should not affect egg quality. Miscarriages happen for many reasons including maternal age, genetic defects, uterine abnormalities, hormonal imbalances, etc. It is very difficult to determine for sure why a woman has miscarried, which is why it is so important for women who are pregnant to be carefully monitored throughout their pregnancies. Also, PCOS does not cause babies to be born with disabilities.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Is there an increased risk of miscarriage for patients who have PCOS?

Thank you for the information on your website which I've found very useful.

I have been diagnosed with borderline PCO about a year ago.  I was recently put on Clomid and became pregnant within three months.

Unfortunately I have since had a miscarriage.  The Doctor has said I can continue with Clomid in a couple of month's time.  I know there is a slight increased risk of miscarriage for patients who have PCO, but I wanted to ask if there was any hormone test I could have in the early stages of pregnancy to see if my hormone levels were normal? I have heard that sometimes patents with PCO have hormone injections during pregnancy - is this common?  Is there anything else I can do to increase my chances of a normal pregnancy?

Also, I have read lots about the link between PCO and the hormone insulin.  Is it worth asking my Doctor for an insulin test or would she have done this as a matter of course when I was first diagnosed?

A: Researchers are now just beginning to understand the relationship between PCOS and insulin resistance. You should talk to your doctor about getting your insulin and glucose levels checked. One of the most effective treatments for women with PCOS, especially those trying to get pregnant, in the use of an insulin sensitizing medication. If you are trying to conceive, it is important to be carefully monitored. You should be having your progesterone levels checked 7 days after you ovulate and again once you test positive for pregnancy. Sometimes low progesterone levels are treated with supplements (either pills, injections or suppositories); however, while it may help, researchers aren’t really sure how effective this treatment is in preventing miscarriages.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Is bleeding during intercourse a symptom of PCOS?

I was diagnosed with PCOS a few years ago when I was married and was trying to conceive.  I have not been on any medication for the past two years and just dealt with having irregular menstrual cycles.  My doctor said as long as I was menstruating every few months or so things should be fine.  I have since divorced and recently entered into a new relationship.  We have had intercourse a couple of times and each time I experienced heavy bleeding.  The first time I thought that since it had been a while since my last period and that I had not been sexually active that intercourse triggered the bleeding (which lasted almost two weeks, which is not an uncommon length for me). But it has happened again.  Is this something common for women with PCOS?

Also, I have relocated to Dallas, TX and need to locate an OB-GYN here.  I would prefer someone that is familiar with PCOS.  Are you able to provide a listing of doctors in this area?

A: Bleeding during intercourse is not a symptom of PCOS. However, please talk to your doctor about this since it could indicate other problems. For a good PCOS doctor near you, please visit the PCOSA website at www.pcosupport.org.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Will a hysterectomy make my PCOS go away?

Is it possible that if I have PCOS and have a hysterectomy it would go away?

A: Having a hysterectomy does not cure PCOS. PCOS is a genetic hormone disorder that just happens to affect the ovaries. Once you have PCOS, you will always have it. While there is no cure for PCOS, there are many treatment options know available that can help minimize symptoms.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Will a hysterectomy make my PCOS go away?

Is it possible that if I have PCOS and have a hysterectomy it would go away?

A: Having a hysterectomy does not cure PCOS. PCOS is a genetic hormone disorder that just happens to affect the ovaries. Once you have PCOS, you will always have it. While there is no cure for PCOS, there are many treatment options know available that can help minimize symptoms.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Are my test results valid during a month when my period started on its own?

My name is Joanne and I'm 37 yrs old and have had PCO for at least 12yrs to the best of my knowledge, though only diagnosed last August. I just had some blood work done last month and I'm a little confused about the numbers.  Of course it had to be a month where my period actually started on it's own, so I'm not sure if that's why the numbers are what they are. fasting glucose=81, chol.=124, LDL=35, FSH=2.8,LH=4.7, DHEAS=157, prolactin=8, progesterone=7.6, andro=157. Should I be retested when I don't get a period for awhile? Is there any other blood work I should be having done? My OBGYN is wonderful, he has been my doc for 13yrs. He doesn't have a problem with ordering tests. Where to go from here I don't know, I can't take b/c,  I get too sick, I mean really sick like in the hospital with IV's going from vomiting so much, I can't deal with that again. I have two beautiful boys thankfully, so now I just want to be healthy so I can enjoy my kids for a long time to come. So any suggestions would be greatly appreciated. I live in Worcester, MA. Should I be going to see and endo? We don't have a big choice in endo's in Worcester, so I would probably have to go to Boston. Thanks again for your time.

A: Hormone levels can be very confusing, especially in relation to PCOS. Please check out our website www.livingwithpcos.com or our book “Living with PCOS” for detailed explanations about hormone levels. If you have PCOS, then your having your period should not have interfered with the levels… You either have PCOS or you don’t. If you are comfortable with your ob/gyn then great; however, in most cases, endocrinologist are usually a little more up-to-date on PCOS, but not always…It really depends on the doctor. There are some great PCOS endocrinologists in Boston if you want to travel… Check out www.pcosupport.org for their names.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Do I have to wait until I attempt conceiving before being positively diagnosed with PCOS?

I was wondering if I could get your opinion or perspective on the possibility of me having PCOS.  I am 23y/o, 5'9 and 130lbs.  When I was 18 I began having menstrual problems for a couple months (no period one month, lengthened another....), but I was also a college athlete.  So my OBGYN put me on birth control pills.  Later she considered the possibility of PCOS.  I have facial hair as well, although since childhood have been pretty hairy (arms/legs).  No other women (mom, sisters, grandmas, aunts, great aunts) in my family have PCOS, nor facial hair, nor have trouble conceiving.  My OBGYN also put me on Spironolactone, which didn't seem to help too much.  In addition I have dealt with acne since 15y/o, although several other people in my family have as well.  All my hormone levels were normal when tested two years ago except a slight increase in testosterone levels.  On ultrasound two years ago, everything was completely normal (no cysts).  I have no problems with weight, nor insulin, nor hypertension.  Although once I had received a high HDL level in my monthly lipid levels testing when I was on Accutane for acne.
So here I am at 23....just returned from my yearly OBGYN visit.  I had gotten off birth control pills about a year ago and had no problems with menstruation for the year until this past month when I was really irregular (i.e., got my period, then three days later it was back again and I spotted throughout the month).  This past month I have had a lot of stress in my life, from the death of 2 friends and moving into a new house (not sure if this could be a factor).  So when I went to my OBGYN she thought it could be PCOS but said a diagnosis could not be made until I attempted to conceive, which won't be for quite a few years due to my medical schooling.  She also prescribed me Yasmin and Spironolactone again and ordered a TSH (still awaiting results on that).  I have several concerns and questions....
-Is it probable that I have PCOS?
-I really want to have a family one day, what can I do now to increase my
chances of conceiving one day if I do have PCOS?
-I have read about women losing sexual desire after using Spironolactone, is
there any truth to this or any consistent information out there to support
this?
-What is the percentage of lean women with PCOS who are able to conceive with
or without help?

A: While many of the symptoms your mentioned are common among women with PCOS, the ONLY way to know for sure whether or not you have PCOS is to have your hormone levels checked (especially LH, FSH, testosterone, DHEAS and prolactin).I would talk to your doctor about your concerns and see if he or she will draw blood to assess your hormone levels.  It is important to remember that PCOS is not just a infertility disorder…if left untreated, it can increase your risk for developing diabetes, cardiovascular disease and certain types of cancer so it’s important to get diagnosed whether or not you are trying to conceive.  Once you get an accurate diagnosis you can then start looking at treatment options which can minimize or eliminate many of the symptoms (including infertility) and lower your risk for developing the long-term effects.  There are no studies which have been done looking specifically at lean women with PCOS.  However, overall most women with PCOS are able to become pregnant either on their own or with the help of fertility medications.  Loss of sexual desire is a side effect of using Spironolactone for some women, but this varies greatly from person to person.  If this is a concern, once you get an accurate diagnosis, you can look at other treatment options.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Will PCOS prevent me from having children?

My name is Linda I am 31yrs old. On June 14, 2001 I had a laparoscopy done an was diagnosed with Polycystic Ovary Syndrome. I am not quite sure what exactly all that means.  My concern is that I would like to one day have a baby, hopefully soon.  Will this prevent me from having children? I would like to give you my medical history so that you may have better understanding.  When I was ten years old I had to have an emergency appendectomy, then in 1997 I had my gallbladder removed.  October of 1999 I had a laparoscopy due to severe pelvic pain as well as painful intercourse.  At that time my doctors' only complaint was the massive adhesion I had due to my appendectomy an gallbladder surgery.  At that time he said I would be fine with no problem of getting pregnant.  Now that I had my procedure in June 14,2001 I was diagnosed with PCOS.  I'm not quite sure how I got this or what can be done. I am overweight;  I am 5'1" an weigh 201 pounds.   I'm sure that might have some sort of factor to my condition .  I would like to know some information about PCOS, and what type of treatment that can be done.

A: PCOS may well play a role in how easily you are able to conceive, but it doesn't mean necessarily that you can't have children.  Seeking appropriate medical care with the right physician is a good start.  A knowledgeable GYN may be appropriate now, but a reproductive endocrinologist may prove to be a better choice if initial attempts to conceive are not successful. 

There is some evidence that losing as little as 5% of body weight may help you conceive.  Talk to your doctor about exercise, and perhaps modifying your diet to incorporate a lower carb, higher protein mix. 

When you are initially diagnosed with PCOS, you have many questions.  All of the answers aren't known. Reading a good basic book on PCOS is a good place to begin and there are several out there.  Also, read information on websites, but be aware that many are not accurate. The PCOS Pavilion at OBGYN.net is a good place to begin.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Is there a common thread in thinner women and PCOS and insulin resistance?

I just recently have been diagnosed with PCOS in combination with insulin resistance.  After doing some research myself, I am puzzled.  I am an active 5'4 112 lb woman who has never been heavy.  All material suggests, so far, weight gain and a tendency to be heavy.  I am not on any medication yet.  My doctor wishes to consult with me but that is a couple weeks away (so I am trying the "sugar busters" way of eating in the meantime)  My husband and I have been trying to conceive for 5 years.  My question is:  is there a common thread in thinner women and PCOS and insulin resistance in that WHERE maybe is the source of the high level of testosterone?  Is it as simple as just hereditary?

A: Many women with PCOS are thin. All women with PCOS have some type of insulin problem – this is what causes PCOS and the elevated testosterone levels. Researchers are just now beginning to understand the connection between PCOS and insulin resistance. PCOS is a genetic disorder.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Why haven't I read anything about Chinese herbal therapy as a viable treatment option?

I am 35 years old and have been diagnosed with PCOS since my early twenties. I was prescribed the pill to start my period, but there did not appear to be any further knowledge about what I had, nor how to control the hursutism associated with this syndrome.

About a year and a half ago my holistic gynecologist referred me to a Chinese doctor, who has prescribed herbs that have helped me with most of my symptoms.  He says that my condition is related to a liver dysfunction.  I'm not sure how valid his diagnosis is, but I know I've seen far more results than when I was simply on the 'pill'.  My question is:  Why haven't I read anything about Chinese herbal therapy as a viable treatment option?  Is there some long term adverse effect that I need to be made aware of, or is this once again a case of western medicine closing itself off from alternative therapies ( possibly due to the monetary incentive to support the drug industry), even at the cost of truly healing patients.

A: Many women with PCOS have been successfully in treating their symptoms with alternative therapies. If you are interested in this method, I would suggest educating yourself and learning as much as possible. You also might want to talk to a Naturopath – a doctor who specializes in alternative therapies, including herbal therapies.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Can Clomid be used by people with a history of thrombosis?

I am 32 years old and have only been diagnosed with PCOS this week - despite having nearly all the symptoms since puberty. I think being on the pill may have helped me with the acne, menstruation and hair problems so I was less noticeable. But I have suffered depression that the psychiatric said was a chemical imbalance and not life situations - but gave me nothing for it. I was diagnosed as reactive hyperglycemic because of blood sugar problems. I am seriously over weight. At once stage I was treated for high cholesterol. I now have adult acne.

I developed blood clots in my legs and had to go off of the pill. This week I went to a gynecologist instead of the local family planning clinic because of abnormal menstruation problems which I thought might be an after effect of the pill. He did scans and my ovaries are polycystic.  Also I am not producing estrogen.  After much talking with him of my medical history it was easy to see I had PCOS.

I have always thought I was a very lucky teenager not to have fallen pregnant - now I know this was not luck.

My question is this: I have seen that most people use Clomid for PCOS. Can this be used by people with a history of thrombosis?

A: Unfortunately, while Clomid does work for some women with PCOS, it also is not successful for many. You really want to talk to your doctor about whether or not you are a candidate for Clomid. There are other more effective options for women with PCOS to become pregnant, such as using an insulin sensitizer such as Metformin.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Will being on the pill interfere with hormonal testing?

I am 21 years old and I exhibit all the "classic" symptoms of PCOS. My gynecologist has been of little help, and I would like to see an endocrinologist. My problem is that I am on the pill. Will this interfere with hormonal testing? Should I see an endocrinologist anyway or find a new gynecologist?

A: Yes, the pill will interfere with any hormone testing. Most doctors want you to be off the pill for at least 3 months before any hormone testing can be done.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Do I really have PCOS?

I am 43 years old and have stopped having periods.  My doctor has told me that, "The change is coming," but I still feel the onset of a period I just don't have it.   About four years ago my hair started falling out in clumps.  It has never grown back.  I ballooned up to 216 pounds and have tried losing on both the Atkins and Zone diets.  I have lost weight, regained it, am currently trying to stay on a low-carb diet but am finding it difficult.  My questions are:

Should I be experiencing menopause so early?  No female in my family has ever had these symptoms before the age of about 50.  My sister is older than I am and has recently had another baby.

How do I find a doctor that knows about PCOS?

If I am otherwise healthy, why did my hair start falling out once I got on the Atkins diet?

I get depressed and am sleepy quite a lot. I also have cramps in my abdomen but never start a period.  Is that normal?

I retain water but I also drink lots of water.  When I push my finger into my shin it leaves a deep indention.  Should I cut back on the amount I drink? My symptoms don't sound as severe so maybe I don't suffer from PCOS.

A: Many women begin to experience the symptoms of menopause up to 10 years before menopause actually hits. I would definitely talk to your doctor about this. There are tests he or she can run to determine if you are entering menopause. About seeing a PCOS-friendly doctor, try the PCOSA website at www.pcosupport.orgP.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Are there more holistic approaches for managing PCOS symptoms?

I have been trying to collect information that will educate me on how to manage PCOS though diet. Many of the symptoms that brought me to this diagnosis cannot be helped at this point without large amounts of unavailable medications. How can I alter my diet to decrease the weight gain (maybe even lose some)?  What other benefits can be sought through more holistic approaches?

A:Many women with PCOS have had success in limiting their carbohydrate intake. There are a wide variety of plans that will help you do this. I would suggest that you talk to a nutritionist who is experienced in dealing with people with diabetes or insulin-problems.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Can you help me find a "PCOS-friendly" doctor?

I am 26 years old and was diagnosed with PCOS three years ago and my symptoms are running out of control.  I have hursutism, scalp balding (moderate-severe), very irregular periods, overweight (5'7" and 176lbs.) and hypertension.  I am on Orthocept/Desogen, Norvasc, Diovan w/HCTZ, Glucophage XR 1500mg.  I am in desperate need of a GYN who is knowledgeable of the treatment and management of PCOS.  I am now being followed by my PCP who is an endocrinologist.  Do you know any good GYN and Dermatology MD's in the Northern/Central New Jersey area?  I am falling apart. Please help with any information that you may have.  I am getting desperate. 

A: I would check the PCOSA website (www.pcosupport.org) for information about PCOS-friendly doctors. Good luck!

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Have I been treated too soon for PCOS?

I am worried that I have been treated to soon for PCOS.  My FSH was 5.3 and my LH was 9.5. I have had my tubes cut and burnt for 8 yrs. I am not overweight but am pretty thick in the middle. I have oily skin and break out on my back a lot. I have no sex drive. I have had high cholesterol and LDL high.  I have been on Levoxyl for over 1 yr.  I have had a cyst removed 5 yrs. ago.  The last year my periods have changed.  Not much of anything.  The past 3 months I have had crazy periods.  I bleed so heavy the first day that I ruin all my clothes! The second day I spot and then I stop. I had cramps so bad last month before and during my cycle.  I had to lay down and that is not normal for me. This month I noticed a pain (shooting) on my left side (ovary I think) but the cramps were not as bad.  I have never missed a period and have had 3 children.  It was pretty easy to get pregnant.  I have lost a lot of hair. I have more thinning on top (people don't notice but I do). I thought it was because of thyroid. I had a doctor overmedicate me with Levoxyl for 1 year.  My heart was acting up terribly.  He was a regular doctor.  He finally sent me to a endocrine and diabetes doctor and we had to start all over.  I believe she knows what she is doing but I am scared.  I take .50 mcg Levoxyl and my thyroid is doing good but now I am on Metformin 1000mg. a day for PCOS.  I have already taken medicine that made things worse and I need a second opinion.  What do you think? Is she acting to fast?  She said that if the LH is 2 points higher than the FSH than you have PCOS. Mine was 4.   I am sorry for the lengthy mail.   Please give me some advice.

P.S. I also have loose stools now. I have been on it for 2 weeks.  Also, I do get sick to my stomach a lot.  Will it truly stop?

A: Women with PCOS usually have elevated LH levels. However, having extreme debilitating pain is not normal and you should talk to your doctor about this since it could indicate other problems. Treating PCOS with Metformin/Glucophage does help lessen many of the symptoms of PCOS, including infertility, excess weight, and sometimes acne and unwanted hair. However, if you aren’t trying to conceive, there might be alternative treatment options such as diet and exercise. You definitely want to lower your cholesterol levels and decrease your chances of suffering from heart disease. It’s always a good idea to get a second opinion, especially if you are feeling uncomfortable.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: What are the alternatives to IVF for achieving pregnancy?

I have been trying for a baby for over 3 years and was diagnosed with PCOS 2 years ago. I have been on a 9 month course of Clomid which failed to promote ovulation. I am currently waiting for an appointment at an IVF clinic.  Is there an alternative to IVF so that I might conceive naturally?  What is the best way to manage the symptoms of PCOS?

A: As for treating PCOS, the most effective method for conception is the use of an insulin sensitizing drug, such as Glucophage/Metformin. This can be used alone, or sometimes in conjunction with fertility medications such as Clomid, in order to promote ovulation. I would ask your doctor about this course of treatment before you attempt IVF.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: How long does it take women with PCOS to conceive normally?

I am doing some research about PCOS and came across this question in my forum: "A woman wrote on our PCOS list that it takes PCOS Women a maximum of 2 years to conceive normally." Now my question is, is this really true?  I would think this would be setting up women with high expectations.  What's your spin in this? By the way, I love your column.

A: That is a very good question.  You're absolutely right to question your findings.  There have never been any research studies that I've come across to indicate even an average length of time it might take for a woman to conceive with PCOS, much less a maximum time.

There's a school of thought that suggests that 95% of women with PCOS will be able to conceive and that probably has the most truth in it.  However, how long it will take a woman to conceive depends on an incredible number of factors.  How old is the mother? Is there male factor involved?  Does the woman have any other conditions that might prohibit conception?

And that success rate includes ARTs as well.  So, some women with PCOS would only be able to conceive using in vitro fertilization.  In other words, who knows how long it will take.  To say you absolutely can get pregnant in two years is irresponsible.  Every woman is different, and her chances of conception vary even during her reproductive years.  I conceived very easily without fertility medications at age 23, miscarried on Clomid at 25 and took several years and lots of fertility medications to conceive my second, which I did last year at 30.

And the sad reality is that there are some women with PCOS who will not be able to conceive, and may have to look at other ways to add children to their lives.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Are the other options besides birth control for controlling PCOS symptoms?

I have been trying to conceive since March of 1999.  I finally went to an Ob/Gyn in September of 1999 and then continued on to see an Endocrinologist in March of 2000.  I certainly haven't done too much compared to many people-3 cycles of Follistim included in one of the 3 was uterine insemination.  I was responding very well to Follistim.  So, here is the problem.  I am now on a different insurance and it does not cover any infertility treatments.  But, I am worried about keeping the PCOS under control yet don't want to go back to Birth Control.  I will be getting my previous insurance that DID cover treatments in January again but would like to know what is normally done to control PCOS besides birth control that isn't termed under a fertility treatment?
And do home pregnancy tests work accurately for people with PCOS? 

A: First of all, home pregnancy tests are accurate in women with PCOS.  Sometimes, the ovulation predictor kits are not.  The best one to use is the Clearplan easy, which has a higher LH threshold. 

I'm not sure if you ovulated or not on the Follistim, but another route would be to go back on Clomid and add an insulin sensitizer.  The Clomid would have to paid for out of pocket generally but it's relatively inexpensive, but the insurance should cover a drug like Metformin for basic PCOS treatment.  It just happens to work really well for infertility - even though it is an off-label use of the drug. 

Also, make sure you are doing everything you can to maximize your chances- take your vitamins with folic acid, exercise, eat well, reduce stress, etc.  Don't forget to chart your cycles and look for other body signals like cervical mucus. Good luck.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: I have PCOS, I can't take the pill and I don't WANT to get pregnant!

I am a 29 year old female who has been diagnosed with PCOS for a few years now.  I am overweight all my life, my testosterone, insulin, cholesterol levels etc. are all UP.  I have been on Metformin now for about 4 months.  I have been told that pregnancy is going to be harder but not impossible.  After reading many chat lines, I see that women do get pregnant.  The problem is...I DO NOT want to have children.  There is a history of endometrial cancer (my mom had it when I was 7 years old.  She had the same problems I have.) I also do not want cancer some day either.  I will be 30 in a few months and have thought long and hard about this and my husband supports me in whatever decision that I have made.  I am wondering if I should have a tubal ligation or a hysterectomy for a fertility solution? My labs indicate infertility anyway and I am strongly against getting pregnant. It is affecting our sexual activity in our marriage of 7 years.  I cannot take the pill so we are just using condoms.  I don't want an accident to occur in the future.  I am looking for some advice on what to do.  My cycles are anywhere from 28 days to 75 days at a time.  I undergo severe cramping, heavy periods, fatigue, nausea, and MOOD swings. I feel like a miserable monster anymore.  I feel like this condition is affecting my whole well being.  I cannot take much more of the symptoms and the fear of possible pregnancy  in the future.  Any suggestions would be appreciated. 

A: A tubal ligation or hysterectomy would prevent pregnancy but do absolutely nothing in treating the symptoms of PCOS.  The best thing to do is schedule an appointment with your physician and discuss your primary concerns:  cancer prevention, pregnancy prevention and your current health. Surgically sterilization is only going to solve one of your concerns.  When you make your appointment, let the receptionist know you may need an extended visit. Write everything down and ask for help creating a treatment plan that fits your concerns. Good luck!

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Is there a link between PCOS and developmental difficulties in offspring?

I recently was diagnosed with PCOS. I also have 2 boys with ADD-type symptoms and learning disabilities.  Have there been any connections made to the many hormone problems experienced in PCOS and developmental difficulties in offspring?

A: That's a very good question.  There is much we don't know about women with PCOS and the affects on their children.  However, there have never been any indications that PCOS increases the rate of developmental difficulties in offspring.  There is no evidence to suggest that there is any link. Good luck!

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: What else can I do to either rule out or confirm this diagnosis?

This diagnosis is new to me and all I have had is an ultrasound to detect the cysts (at my OBGYN, and they did not recommend any further investigation, but luckily I did some of my own research on the internet.) Yesterday I went to my Primary Care Physician for some blood tests but I am not sure what my next step should be.  The lab work consisted of a glucose tolerance test, cholesterol tests and lipid profile, and some hormone levels.  What else can I do to either rule out or confirm this diagnosis? My results will not be back until later this week.
Hope you can help!

A: You are right on target for getting a diagnosis. There should be three components to getting a diagnosis.  First, you need blood work done and you're getting everything tested that's appropriate. Second, an ultrasound can be done to determine if you currently have any cysts.  Remember, however, that the presence of cysts is not necessary to diagnose PCOS and because you have cysts is not enough evidence to diagnosis PCOS.  Lastly, a medical history will be done.  This is the time to be completely honest about all symptoms, menstrual problems, and reproductive history. You and your doctor are on the right track.  Good luck!

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: First endocrinology visit: What questions should I ask?

My daughter has high levels of testosterone in her blood.  She has had a scan and no cysts have shown.  She has all the other symptoms (weight gain) and cannot shift it.  Her periods are very erratic and her mood swings and temper are, at times, unbearable.  The facial hair is what bothers her the most.  She is only 20 years old.  On the 24th of May she has an appointment with an endocrinologist.  Could you give me some advice on the sort of questions we should ask?  What kinds of things will they do?   I would be most grateful for any help.

A: Seeing an endocrinologist is a great start.  He or she will probably do a complete blood work up, which is the place to begin and will determine if she actually has PCOS.  Remind her to be completely honest in her check up about her symptoms so her physician can get a clear picture about her condition.  Also have her consider what she most wants to treat right now, like the facial hair.  As a side note, just because she doesn't have cysts doesn't mean she doesn't have PCOS.  Good luck!

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Can you help me find a doctor who will listen?

I am writing you in hopes that you can help me with a problem.  I have been doing a lot of research on PCOS.  My husband and I feel I have this disease, however, I cannot  find a physician who knows  anything about PCOS where I live. I did find someone in Raleigh, NC who claims to be a endocrinologist that can help,  I don't mind traveling to get help for my problem, however, I would like to find one where I live.  Is it possible to have all the symptoms, I mean all but maybe 2, and it not show up in my blood work?  I am so confused, I argue with my doctor about this, she says if had PCOS I would have noticed this at age 12 or during puberty.  I have a severe case of endometriosis and have had 4 surgeries for this.  I have hair in unwanted places, adult acne, weight gain in mid section, up to 80lbs in one year, I have been to fertility specialist with no success.  I've  been married 10 yrs. with no contraceptive used.  Irregular periods with mood swings.  I cramp and have sharp pains which have become a way of life.  My doctor says I'm very cystic.  I had major surgery 10 years ago for a dermoid cyst that was removed.  I could go on and on.  Please HELP ME  find a local doctor who will listen and help me get this corrected.  I live in Charlotte, NC.  Thank you for taking time to read this message.  Anything you can do will be much appreciated.

A: It isn't easy when you know your body isn't working right and you don't know why or what to do.  First of all, you do have a lot of the symptoms, but it may not be PCOS.  The only conclusive way is through blood work.  Although your physician said your blood work was normal, get your exact levels and check them out.  Some women with PCOS have elevated levels that may fall within normal ranges.  Or, for example, the levels are fine, but the ratio (LH/FSH, for example) may be skewed.  Find out for yourself.  Get the levels, compare them (there's a chart at my website www.livingwithpcos.com) and in my book, and maybe in Sam Thatcher's, but I'm not sure.

You are on the right track.  You need to find an endocrinologist.  PCOSA (www.pcosupport.org) maintains a physician list that may be helpful.  Also, you can find local support groups through the site.  Other women with PCOS are an excellent source of referrals.  I know the Duke infertility clinic has an excellent reputation, but that may not be close.  Good luck.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: What's the best treatment for PCOS?

What is the best medical treatment for PCOS?

A: There are almost as many answers for this question as there are women with PCO.  The simplest answer:  the
best treatment depends on your treatment goals.  Decide what you want to accomplish for your health and see your physician.  Do you want to get pregnant, lose weight, get rid of acne or treat a receding hairline?  Because there is no cure for PCOS, the best we can do is manage the symptoms.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Ovulation problems

I have been having problems of ovulating for some time now. What is the remedy which can help me? I have been trying to conceive without success for some time.  I appreciate it if you can help.

A: Women with PCO often have difficulty conceiving because they do not ovulate regularly.  First, you need to carefully monitor your body to determine when and if you ovulate.  Check your basal temps, your cervical mucus, use ovulation predictor kits, etc to determine if you are.  (An OPK with a high LH threshold level like the new clear plan is best).

If so, Clomid is the general first choice of treatment.  There are few risks and the cost in minimal.  For many woman with PCO, adding an insulin sensitizer works well.  Make sure your medical professional is someone trained to treat PCOS, which may not be your OB-GYN.  You may need to see a reproductive endocrinologist.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Can obese PCOS women get pregnant if they lose weight?

Is there any truth that if women with PCOS who are obese lose weight, becoming pregnant will be obtainable? I am 28 years old and have had all the signs of PCOS since I was 15. I have gone through infertility treatments with no success. I have now weigh 250 pounds, I have recently changed my diet restricting carbs and walking. I want my life back...

A: First of all, many, if not most women with PCO will be able to conceive.  And many get pregnant who are obese.  However, even losing as little a 5% of your body weight may improve your fertility odds.  Keep on low carbing and walking, and don't give up.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

Q: Will PCOS symptoms go away if I have my ovaries removed?

I am 24 and miserable and suffering with ALL of the horrible effects of PCOS. I was diagnosed at 15 and have never been effectively treated.  I spent many years on and off birth control which accomplished nothing.  I currently can't take any due to hypertension and obesity.  I am currently on nothing and wondering if I have my ovaries removed
will the PCOS go away? 

A:  It is very important to remember that problems with the ovaries are actually a SYMPTOM of PCOS, not a cause.  PCOS is the result of a hormone imbalance which affects many parts of the body, including the ovaries.  Removing your ovaries (and/or uterus) will do absolutely nothing to make PCOS go away and will not eliminate the many symptoms of PCOS, such as weight gain, obesity, acne, unwanted hair and infertility.  Removing the ovaries solely due to PCOS could actually cause more problems for you by forcing your body to enter early menopause.  As a result, you would experience menopausal symptoms, have to take hormone replacement therapy for the rest of your life, and might increase your risk for developing heart disease and stroke and perhaps (as some studies have shown) osteoporosis and Alzheimer's Disease.

Fortunately, there are many options currently available to treat PCOS depending on your own personal treatment goals.  First of all, find a doctor who is knowledgeable about PCOS and talk to him or her about appropriate medications and lifestyle changes that can help you minimize and maybe even eliminate the symptoms of PCOS.

P.S. Remember that this information is for educational purposes only and is not intended to replace the care of your physician.

References:

Angela Best-Boss and Evelina Weidman Sterling

Co-Authors, "Living with PCOS:Polycystic Ovary Syndrome"