Reluctant to Accept PCOS Diagnosis

  • I just got a call yesterday from my doctor with the results from a bunch of bloodwork I recently had done. Basically, my OB/GYN ran a battery of tests to try to get to the bottom of my irregular periods and rule out any other health problems.

    The good news is that only one indicator -- the androgens, which I understand as testosterone -- came back irregular, and that only slightly. Both glucose and insulin normal, estrogen normal, other hormones, normal. However, because of my irregular periods and elevated testosterone, she said she could safely give me a PCOS diagnosis.

    I have reservations about accepting this wholesale (I shared this with her, and she seemed to understand), because there seems to be a major chicken-and-egg problem. I am quite overweight, and from what I understand, obesity can cause testosterone levels to be high and for, accordingly, ovulation to stop. I don't have other PCOS symptoms, at least not so far. So, do I have PCOS which is causing me to be overweight and have irregular periods, or am I overweight, which is making me have irregular periods and seem like I have PCOS?

    This is all very new to me. In your (obviously non-clinical ) opinions, is there anything I'd do differently with or without a "diagnosis" of PCOS? Second, is the testosterone thing a major obstacle to fertility, should I decide I want to become pregnant? That's something I should have asked her but neglected to.

    Basically, at this point, I think my course of action is to keep losing weight and stop taking the pill. My feeling was that the pill will mask changes in my cycle that could happen based on the weight loss. She said this was fine as long as I get it induced if I don't have one for 3 months. Then I can go back in for more bloodwork in 6 months or a year to see if anything changes.

    Thoughts? I'm very confused about this stuff.
  • Jennifer,

    I know I had said in 100 lb club that the pill had helped me lose weight and because I have PCOS, I strongly believe that. I had always reached a plateau point at 330 lbs no matter what I did, I would be eating awesome and exercising 5 days a week for an hour and didn't lose weight for 9 months. It would frustrate me immensely but I didn't understand that my hormones being out of whack could've prevented me from losing weight. Just because of my experiences, I would recommend sticking with the pill for at least 6 months and see how you feel about it.
  • WELCOME, teapotdynamo!!!


    Quote:
    So, do I have PCOS which is causing me to be overweight and have irregular periods, or am I overweight, which is making me have irregular periods and seem like I have PCOS?

    I'm going to say you have PCOS and it's causing the irregular periods and hormonal changes that lead to weight gain. But don't mark my word for it...go by what your doctor says. Especially if you have one that knows what PCOS is. There are alot out there that don't and just tell you you're too fat and need to eat less and exercise more. It isn't that easy with PCOS.


    Quote:
    This is all very new to me. In your (obviously non-clinical ) opinions, is there anything I'd do differently with or without a "diagnosis" of PCOS? Second, is the testosterone thing a major obstacle to fertility, should I decide I want to become pregnant?

    I made a major diet and exercise change in my life, but I needed too anyhow. I would of did it even without PCOS, but the PCOS sorta kick started me more to want to lose the weight and exercise. The testostrone isnt the fertility blocker; it's the ovaries that aren't producing mature eggs that is the blocker. There are medicines the doc can give you to help you produce a mature egg shall you decide you want to get pregnant. I had a baby without any of that so it is still possible to have a child with PCOS/irregular periods.

    Check out our articles section. There are quite a few that might interest you and answer more questions you might have. Here is a quick link:

    http://www.3fatchicks.com/forum/forumdisplay.php?f=125

    Please come back and visit us and let us know how things are going. We'd love to hear from you.
  • Did your doctor also do an ultrasound to see if you had cysts? Two other hormones they need to check are follicle stimulating hormone (FSH) and luteinizing hormone (LH). Did you get these checked as well?
  • Jennifer, I did some checking with INCIID, my favorite PCOS info site. They say that it is a wide differing opinion on how to diagnose, but one acceptable means is 2-3 of the following symptoms that cannot be ruled out by other diagnoses.

    Women with PCOS may have some of the following symptoms:

    Amenorrhea (no menstrual period), infrequent menses, and/or oligomenorrhea (irregular bleeding) — Cycles are often greater than six weeks in length, with eight or fewer periods in a year. Irregular bleeding may include lengthy bleeding episodes, scant or heavy periods, or frequent spotting.

    Oligo or anovulation (infrequent or absent ovulation) — While women with PCOS produce follicles — which are fluid-filled sacs on the ovary that contain an egg — the follicles often do not mature and release as needed for ovulation. It is these immature follicles that create the cysts.
    Hyperandrogenism — Increased serum levels of male hormones. Specifically, testosterone, androstenedione, and dehydroepiandrosterone sulfate (DHEAS).

    Infertility — Infertility is the inability to get pregnant within six to 12 months of unprotected intercourse, depending on age. With PCOS, infertility is usually due to ovulatory dysfunction.

    Cystic ovaries — Classic PCOS ovaries have a "string of pearls" or "pearl necklace" appearance with many cysts (fluid-filled sacs). It is difficult to diagnose PCOS without the presence of some cysts or ovarian enlargement, but sometimes more subtle alterations may not have been recorded, or are not recognized as abnormal, by the ultrasonographer.

    Enlarged ovaries — Polycystic ovaries are usually 1.5 to 3 times larger than normal.

    Chronic pelvic pain — The exact cause of this pain isn't known, but it may be due to enlarged ovaries leading to pelvic crowding. It is considered chronic when it has been noted for greater than six months.

    Obesity or weight gain — Commonly a woman with PCOS will have what is called an apple figure where excess weight is concentrated heavily in the abdomen, similar to the way men often gain weight, with comparatively narrower arms and legs. The hip:waist ratio is smaller than on a pear-shaped woman — meaning there is less difference between hip and waist measurements. It should be noted that most, but not all, women with PCOS are overweight.

    Insulin resistance, hyperinsulinemia, and diabetes — Insulin resistance is a condition where the body's use of insulin is inefficient. It is usually accompanied by compensatory hyperinsulinemia — an over-production of insulin. Both conditions often occur with normal glucose levels, and may be a precursor to diabetes, in which glucose intolerance is further decreased and blood glucose levels may also be elevated.

    Dyslipidemia (lipid abnormalities) — Some women with PCOS have elevated LDL and reduced HDL cholesterol levels, as well as high triglycerides.

    Hypertension (high blood pressure) — Blood pressure readings over 140/90.

    Hirsutism (excess hair) — Excess hair growth such as on the face, chest, abdomen, thumbs, or toes.

    Alopecia (male-pattern baldness or thinning hair) — The balding is more common on the top of the head than at the temples.

    Acne/Oily Skin/Seborrhea — Oil production is stimulated by overproduction of androgens. Seborrhea is dandruff — flaking skin on the scalp caused by excess oil.

    Acanthosis nigricans (dark patches of skin, tan to dark brown/black) — Most commonly on the back of the neck, but also but also in skin creases under arms, breasts, and between thighs, occasionally on the hands, elbows and knees. The darkened skin is usually velvety or rough to the touch.

    Acrochordons (skin tags) — Tiny flaps (tags) of skin that usually cause no symptoms unless irritated by rubbing.
  • Jennifer, these are great!!! I am going to post these in our articles forum ok. Gosh...I have most of these symptoms. Still. After over 15 years. BLah!!
  • Ugh, I didn't know Seborrhea was a symptom, no wonder I've had that ongoing since puberty. I used to also have Alopecia but that went away a few years ago and I wish that the hirsutism would go away.
  • In response to your question, Jennifer, no, she didn't do an ultrasound. I think she mentioned before that it's not always definitive, and it's cost-prohibitive in an era of managed care. Is this something you guys think would be worth pushing for? I think if I pressed her, she'd be willing to do it.

    She did, however, do FSH and LH tests, which were normal.

    I hope no one is offended by my being a little skeptical about a diagnosis at this point. It's just difficult for me to get my brain around cause and effect. My list of symptoms (even based on your great list) is rather short: amenorrhea, infertility (as defined by this list), obesity, and high cholesterol. The high cholesterol is definitely a genetic thing -- my dad's is through the roof, and the lack of periods/ovulation could be just because I'm heavy, as could the slightly elevated androgens.

    I think I've decided that the best course of action for me is to do what I've been doing, anyway... just keep losing the weight, then see if any of the problems sort themselves out.

    Thanks you guys for the responses -- sorry it took me a while to write back; I forgot I posted here!
  • Hi Jennifer, don't worry, I don't mind you at all being skeptical! I don't want PCOS either! If you have insurance, I'd do it for a more solid diagnosis. If you have pco's, it's pretty well a good guess you do have PCOS, but if not, then that gives you a chance to get the weight off and see how it goes. Hopefully for you, you don't have it! I always liked knowing that somebody was keeping an eye on my cysts and making sure they were the 'good ones'. However, I'm a hypochodriac. Suzanne 3FC doesn't allow me to use Google when I don't feel good because I'm sure I've got everything!
  • Quote: I don't want PCOS either!

    Me Three!! Me Three!!
  • Teapot:

    Like you, I have high testosterone...that and the "apple" weight gain and mild acanthosis nigricans are the symptoms of my PCOS.

    It's good that you are skeptical. PCOS is not a disease really, it's a syndrome that has symptoms that can change periodically. I have read about many women who "have PCOS", lose weight, and all the "symptoms" go away. That is what I am hoping for me, because when I was smaller, I didn't have these problems. But, people who are of a healthy weight also have PCOS as well. Since your glucose/DHEAS/etc bloodwork came back normal except for the testosterone, you don't have to take any meds to regulate, so I'd just keep doing as you're doing like I am and continuing to lose the weight.

    If you are on the pill, you might as well stay on it for the reason that you're on it...then when you're closer to wanting to get PG you can go off of it and see if your periods are normal. My cycle is a little long...36-38 days, but it's regular.

    Girlie
  • Nelie - saw your post...
    "I used to also have Alopecia but that went away a few years ago and I wish that the hirsutism would go away."

    My RE felt that weight loss & exercise and the accompanying hormonal changes that go with it would moderate the 'dreaded girl-beard' (I probably have a better beard than my husband!) he also suggested the birth control pill, which for me is not a good idea since I have high blood pressure. Perhaps that's something to discuss with your doc? And congrats, BTW - I am looking forward to the ONEderfuls, myself!

    Kim
  • Quote: Did your doctor also do an ultrasound to see if you had cysts? Two other hormones they need to check are follicle stimulating hormone (FSH) and luteinizing hormone (LH). Did you get these checked as well?
    I JUST WANTED TO SAY THAT THAT I DIDN'T HAVE CYSTS WHEN I FIRST WAS DIAGNOSED WITH PCOS AND YOU DONT HAVE TO HAVE ALL THE SYMPTOMS OR EVEN CYSTS TO HAVE PCOS. UNFORTUNATLY THEY CAME LATER WHEN I WAS TRYING TO CONCEIVE. IT WAS A LOT LIKE HER, I HAD ELEVATED LEVELS AND WAS OVER WEIGHT. THEN THINGS JUST CAME AS I GOT OLDER. <SIGH>