I was born without ovaries, but I know someone who was. Turns out a particular set of symptoms that have been troubling her, along with some lab results and MD analysis, point squarely to Polycystic Ovarian Syndrome. She’ll be taking her offending organs to her physician later this week to discuss what to do about it all.
But that’s a long time from now, and the future is even further off, and I give a damn. What I can get from the internet is of some use but I’d really like to hear from some Cysters about symptoms, nature and efficacy of treatments, possibility of remission/resolution … that kind of junk and probably other stuff I don’t even know to ask about.
I was diagnosed around the age of 19 or so. It hasn’t been much of a “OMG NOOOO!” problem for me. I’m very fat. I have insulin resistance and now Type 2 diabetes. My periods have been a mess my entire life (didn’t get them, got them too much, they were heavy, they weren’t heavy, they were on a cycle, they weren’t on a cycle…) I’ve got a hairy chin (finally getting electrolysis!) But really, I just live the life of a very fat person with dumb periods. C’est la vie.
I’ve never wanted to get pregnant, so that aspect hasn’t been an issue for me. The doctors did tell me “well it’s good that we know, so we can deal with it if you ever want to get pregnant.” I have a friend who was diagnosed later in our lives (probably when she was around 30) and she did put on a lot of weight, but lost weight and has had 2 children. So “dealing with it” with regards to PCOS and fertility did work for her.
I was diagnosed with it about 20 years ago but I didn’t have insurance so it was never treated. My periods have always been erratic but got better after my 13 year old was born so I really never worried too much about it. I know in the back of my mind the diagnosis was made but when you’re poor and uninsured if it’s not an emergency it’s not likely to get much attention.
Oddly enough 13 years later my daughter has been diagnosed with it as well. She started menses very early, right before she turned 10. Her periods have always been very heavy but from January of last year until last week she bled every single day from spotting to flooding pads. The first two months in her pediatrician said “this happens sometimes early on. We’ll watch it.” Six months in she got a referral to a gynecologist even though I’d requested testing for hormone issues because she is also always tired, has a fairly thick mustache and acanthosis on the back of her neck, on her lower back, and behind her knees. She is overweight and to me looks bloated but she does not eat so much that this ever really made sense. The gynecologist said all she could really do was take blood so she did that, then consulted with the pediatrician about seeing an endocrinologist, who she finally saw in January of THIS year. They took five vials of blood for testing (and asked her if they could get one more for a research project, which she excitedly agreed to in exchange for a 15 dollar check!)
A month later the endo called and said she definitely has PCOS, as well as the common co-morbid insulin resistance and she’s pretty anemic as well. She was started on Metformin, spironolactone, and birth control about ten days ago. I was told to purchase a multivitamin with iron and b12. Within three days of taking the birth control her bleeding completely stopped. So that’s great! But the metformin is making her so ill I don’t see how she can keep taking it. Today was her first day back at school but she didn’t make it a full hour before puking in a trash can and I’d only given her half her regular dose for the past two days because she’s been so ill. She hasn’t started the spironolactone yet because the doctor suggested waiting until she adjusted to the Metformin, as it can also cause nausea and diarrhea. I’m waiting to hear back from the endo, and until then I’m stopping the Metformin. The school nurse told me there were other med options so I’m hoping and ever grateful for her state insurance, as slow as it’s been at least she’s getting proper care now.
The endocrinologist also suggested a low carb diet with additional iron and protein for now, and at least 30 minutes of exercise at least four times a week. She really hasn’t been up for either with all the nausea and weakness but I’m hoping once we get this med situation under control and her anemia cleared up we can get started on that too.
Thanks, ladies. I appreciate the candid responses. The subject of the OP has been dealing with chronic weight gain (despite diet and intense exercise), fatigue, anemia, B12 & D deficiency, insulin resistance (not diabetic or prediabetic), as well as migraines and cysts that have put her in the ER. I’m usually pretty chill, but I’m anxious for insight into what her future looks like.
There are two sets of diagnostic criteria, one strict and one looser. I have it according to set 2 but not according to set 1. I discovered this when I was trying to have a second child, and kept losing pregnancies. I also have Hashimoto’s disease, B12 absorption deficiency, insulin resistance, and migraines. I guess it’s a pretty common combination. Losing weight has always been difficult to impossible. We gave up on having a second kid. I’m not anemic, though, because I happen to also have hemochromatosis.
She should be given a talk about eating moderately low carb. She might be put on Metformin, which could help with the IR and weight (a little). Birth control pills are useful because they sort of halt the disease’s progression while you’re on them. Spironolactone suppresses testosterone levels, which helps with acne and hair.
Something that helps many women with PCOS (though not me, because my case isn’t severe enough I guess) is daily supplementation of Inositol. It’s a metabolically active sugar alcohol that women with PCOS tend not to have enough of. You can buy it from Amazon, and you add it to your food or drink twice a day. The best brand is Ovasitol. shrug Just something to consider.