PCOS Question

My daughter just had a burst ovarian cyst (discovered by ultrasound) after some terrible belly pains yesterday.

We think she's had it twice before (with similar symptoms) but no one did any ultrasounds and they just assumed it was her appendix at the time. It resolved in a few days, before they had any chance to operate. Thankfully, this time they investigated (different ER).

My question is this - would these three episodes mean she has PCOS (she has other symptoms that seem typical) or are these not necessarily related to PCOS? They did tell her PCOS is a possible diagnosis, but they want to follow up with another ultrasound in 6 weeks and an appointment with a gynaecologist.

I am Type 1 (LADA) and am wondering, if she does have PCOS, how much this predisposes her for Type 1 or more typically Type 2?

She is 21 years old, normal weight, active and generally otherwise healthy (other than lots of allergies). Other than staying as healthy as possible, is the insulin resistance inevitable if she it turns out she has PCOS?

PCOS is a syndrome.

The difference between a syndrome and a disease is that in a disease, every patient will always have a key set of the same major symptoms. Less major symptoms may vary, but the major ones will not. Now, in a syndrome, the key symptoms may vary in a patient… For example: Amenorrhea, considered by many to be a key symptom in PCOS may not be true for some women, who may actually have Menorrhagia, instead. Some women may have cysts (another key symptom), and some women may not.

While the outright causes of PCOS are unknown, what is known about PCOS is that PCOS patients do not have enough adinopectin in their fat – a hormone that facilitates communication with insulin and leptin (hormones which control, as you know, glucose metabolism, and satiety, etc.), among other functions. What this causes in most women is that they have a continuous amount of insulin always being poured into their bodies, like an open faucet. This excessive flow of insulin starts pouring into the body, and starts bathing the ovaries, constantly. When the ovaries are always being bathed in this insulin, a few things happen: They start producing excessive amounts of androgens, which lead to failed ovulations. The way the ovulations fail is that the eggs get stuck in the ovarian walls, creating cysts. Release of eggs starts becoming random, and eventually, when enough cysts are covering up the ovaries, they will impede new eggs from getting released. This will prevent periods from happening, altogether (amenorrhea), and may lead to bursting of cysts, and massive pain. Sometimes, it may lead to menorrhagia (excessive bleeding, from a burst, etc., during what would have been a period episode.)

How the hyperinsulinemia affects the body, in many cases, has to deal with our genes – do we have the T2 predisposition genes, or not. In cases in which a woman does not yet have insulin resistance, they may have hypoglycemia from all that excess hyperinsulinemia. Before insulin resistance, my normal fasting numbers were all 60s - 70s, and sometimes, if I played a lot, or ran my bike a lot, I’d come home with a 40… and not feel anything bad about it. A woman may go on to develop insulin resistance from the excessive amount of insulin in the body constantly barraging the cells, but not develop Type 2, for example – and this is very common, too. Signs of insulin resistance in a woman with PCOS include: Acanthosis Nigricans: darkened, velvety patches of skin at the joints (neck, knees, elbows, armpits, etc.), weight gain, high cholesterol/blood pressure, etc. The excess androgens of PCOS, in themselves will have another list of potential symptoms, including: thinning hair, and acne. Some women with PCOS NEVER gain weight…

To try to tackle all your questions one at a time…

  1. Yes, burst cysts may be one of the symptoms of PCOS. PCOS has a long list of symptoms, including: excess production of male hormones or androgens, amenorrhea, dysmenorrhea, hirsutism, thinning hair, dry skin, skin tags, acanthosis nigricans (the darkening and velveting of patches of skin, typically joint areas like the neck, knees, elbows, armpits, etc.), acne, high cholesterol, high blood pressure, sleep apnea, moodiness, hypoglycemia, insulin resistance, Type 2 Diabetes, etc.
  2. Insulin resistance is not inevitable, if she has PCOS. She has to have the pre-disposition genes for insulin resistance, and Type 2. If she does, then personally, I would say that it may be inevitable… it’s just a matter of time, as the illness naturally progresses… but following a lower carbohydrate diet is ideal and key here, as it keeps the hyperinsulinemia better controlled. If they body doesn’t have a reason to keep producing more insulin, why give it to it?
  3. Your doctor is doing absolutely the right thing, by waiting and following up with an ultrasound. Another good test is simply testing the levels of androgens in her blood. If an ultrasound is inconclusive, I would ask for that, too… or to even ask to measure how much insulin she’s making.
  4. I do know some women with Type 1 who are also PCOS… but I am not sure which came first. Whatever may trigger the body to give itself an autoimmune attack on the pancreas can be subject to endless debate… But… it wouldn’t be out of the question, I would think, for the constant bombardment of insulin to cause so much inflammation (which it does), that it would lead to an autoimmune attack, and Type 1. That is all pure speculation, of course. We just don’t have the answer to those things when it comes to Type 1, and what may or may not trigger it.

    A carb sensible diet is going to be key for the PCOS sufferer, with consumption of flax, regularly, to help bind those excess androgens, along with medication, which can be birth control pills, anti-adrogens, and sometimes, Metmorfin (and some have also said Bayetta.)

    There really is a LOT of information out there… and you can join our group, Women with PCOS and Diabetes, or even visit PCOS Challenge – a ning forum like this one, for women with PCOS. :slight_smile:

Wow! Thank you so much for your most comprehensive response! I knew some of what you wrote, but certainly not all.

My daughter would be at risk of diabetes without PCOS because both T1 (me) and T2 in the family. She does eat very healthy but would be too many carbs for me. She’s thin to normal weight at the moment and has mostly been that way all her life. She does know not to overload on carbs - it can’t be good no matter what you have or haven’t got.

I suspect it’s a wait-and-see situation until after the next scan and a possible referral to a specialist. At least next week I’m moving closer to where she’ll be, so I’ll get her to the scan if I have to drag her there! Young adults her age just aren’t interested in the follow-up.

Thankfully the pain is subsiding. Apparently the fluid was right up to her kidneys.

I even suspect that when I was 19, I may have had a burst ovarian cyst. They took out my appendix within hours, gave them to me in a jar and they looked perfectly healthy to everyone I showed them to. Even the doctor said to my mother, “We caught it early”. Nothing was ‘early’ with the symptoms I was having and the rush to hospital on a Saturday. Funny now that I think about it. No scans in those days.

Thanks again for taking the time to respond. It’s very much appreciated!

I just want to let you know that is possible to have a cyst burst and it not be PCOS or anything diabetes related. My sister gets them from time to time (I think she had 2 in the past 2 or 3 years) and every test came back clean for what they were testing for. Sometimes things happen for no reason :)

Hi Sarah Kay,

Yes, that's my understanding also, and certainly that's what I'm hoping for in the 6-week follow-up. It's horribly painful, but thankfully my daughter is almost completely better now. Amazing how the body can clean up, isn't it?

Yeah, I wasn't meaning to imply in ANY way that a cyst burst was only exclusive to PCOS... But she did ask if this happened in PCOS, and I answered.

Hi The Diabetic Welfare Queen... I didn't take it that you did. And I thank you again for your fantastic response!