I Have Polycystic Ovarian Syndrome, AMA.
Hi, lovely people, this is Citta!
So last week I made an AMA forum post on Premenstual DysphoricDysorder (PMDD). This week I'm going to post an AMA on Polycystic Ovarian Syndrome (PCOS). I have heard from several listeners here on the site that they have been diagnosed with PCOS so that I'm wondering if you need more information or support or just someone to talk about this. I'm not a doctor, though. The scientific medical information I'll provide below would be from trustworthy resources, for instance NHS UK.
PCOS is a condition that affect woman's ovaries. Polycystic ovaries have a number of harmless cysts, which have underdeveloped sacs that often unable to release an egg, thus results in no ovulation. This condition is also associated with abnormal hormone levels in the body. Some of the symptoms that are apparent in PCOS(I do have most of these): irregular periods (dysmenorrhea), difficulty getting pregnant, excessive hair growth, weight gain/being overweight, acne, and emotional problems such as depression. This is also associated with insulin resistance, type 2 diabetes, and high cholesterol levels. The exact cause of PCOS is unknown, but it's related to abnormal hormone levels (hormone imbalance), resistance to insulin, and genetics. There's no cure for PCOS, but there are treatments for the symptoms, for instance through changes of lifestyles and medications.
If you ask me if I would like to have a life without PCOS, of course I'd say I would. PCOS is hard and requires a lot of patience, regular check ups, treatments, with excessive costs and doctors visits. However, without PCOS I wouldn't have learned the first thing about the importance of healthy lifestyles and truly, truly understand and experience it. I wouldn't have learned about empathy for people who are ill, and relating to the image of myself, with my weight gain and everything, I learn to respect myself and be grateful about my weight. I was once ran to the ER during high school for exercising too much to lose weight despite being too skinny. After PCOS, I've gained 35 pounds yet happy with healthy BMI and importantly, healthy perspective about who I am and feel beauty.
It's been 5-6 years since I got diagnosed. I've been consuming oral medications such as birth control pills, metformin for my insulin resistance, and statin for the cholesterol levels. It's been tough and hard because it gets annoying and bothering sometimes, but I normally function well and I have awesome doctors and full coverage of health insurance so I have lots of things to be grateful for :)
Do ask me anything :) Oh, I'm no doctor so I can't give you professional opinions LOL, but I'm trying to do more research and research so I hope I can provide you with answers :)
What changes in lifestyle have worked for you?
Hi Smile, thank you for your question!
What have worked for improvement in PCOS(lower glucose levels, lower cholesterol levels, more regular periods) are: participating in mild regular exercise to lose weight (I swim three times a week,keep my weight in check for normal BMI, and do simple yoga and stretching just to increase my movements), healthy eating (more fruit and veggies, drink only water and tea without sugar, replacing rice with brown rice, wholegrain bread, or oatmeal. I still have problems in limiting cake, pies, and cookies because I loveeee to bake), and stop smoking. I wasn't a heavy smoker -- only 1-2 cigars during anxiety moments to distract my obsessive thoughts, but then I stopped smoking and my therapist has helped me to meditate, do deep belly breathing, and cognitive therapy.
My cholesterol and insulin levels, though still in the upper limits, are much better than when I first had my symptoms. I also have more regular periods, my maximum is 3 months late -- before, it could be up to 7 months.
Thanks Citta!!
You're most welcome! Feel free to PM me if you ever have questions!
I have PCOS too! I was diagnosed in 2008 with it. Still, I need to explain myself to every new doctor I meet because most of them a) think that PCOS is just a made-up illness by fat women or b) they have no clue what PCOS is. I'm on no medication. The only thing I was told to do (back in 2008) was to lose weight. I didn't even know PCOS was treatable. I have hypothyroidism as well by the way (and I'm bipolar, have social anxiety disorder, GAD and PTSD).I have the overweight-part, the hair-growth, acne and irregular periods (plus depressions but that comes from the bipolar).
So I have two questions:
1) Was it easy to get diagnosed and to get treated?
2) Have you ever been met with prejudices, like it is a made-up illness?
Hi,MissZ! Thank you very much for your question. I'm sorry to hear about your medical condition, it's challenging to have different kind of medical situation and I can imagine and understand how it feels to be in your shoes.
1) Was it easy to get diagnosed and to get treated?
According to medical journals, there's no single, specific test to diagnosePCOS. However, there are different tests and exams to take to observe the symptoms (the most common is of course, menstrual irregularity). The tests that I've taken before are:
- Pelvic ultrasounds (abdominal/transvaginal)to look for cysts in the ovaries (usually the ovaries are larger than normal, have more follicles per ovary, and lined up on the surface of the ovaries -- the term is appearance of a pearl necklace)
- Lab tests to see theFSH(Follicle Stimulating Hormone) andLH(LutenizingHormone) -- withPCOS, usually theLHwill be elevated and theFSHwill be normal or lower.LH/FSHratio is normally 1:1, but withPCOSit will be greater than 2:1 or 3:1
- Lab tests to see the testosterone and estrogens level, usually elevated
- Lab tests for lipid profile (usually lowHDL, highLDL, with elevated triglycerides)
- Lab tests for glucose and insulin (usually elevated insulin and elevated level of fasting and/or a glucose tolerance test)
- If you have the hair growth, then usually test to see if theandrostenedioneis elevated.
The treatment is easy, it's a long-term treatment not to cure thePCOSbut to reduce the symptoms (insulin resistance, high cholesterol,dysmenorrhea) and to prevent long-term illness and further complications such as endometriosis/ovariancancer, also type 2 diabetes and cardiovascular disease. Treatments are to promote ovulation, counterbalance the levels of hormones, and regulate menstrual cycles. Usually using daily oral medications (low-dose oral contraceptives to stabilize hormones),antiandrogens(to address thehirsutismand acne, especially in your case with hair growth),metforminto reduce insulin resistance, andstatinto minimize lipid abnormalities.
2) Have you ever been met with prejudices, like it is a made-up illness?
I am very careful in choosing my doctors (I only go to those with a Ph.D. LOL) so they are familiar with this kind of disorder and from them, no prejudice. It's a great thing to be thankful for. However, I have met with prejudices from other people, even from professionals, but it's for other condition (I have mental health disability such asPMDD and anxiety). It's not nice to hear negative comments from people and to be surrounded by them.
With PCOS, it was kind of hard once because the treatment is long-term (insulin resistance and lipid can be real disturbing!) so I had experienced several people telling me not to come to the doctors because they say the doctors are just trying to make money out of me and that there have been many cases where people had irregular periods yet fertile with lots of children afterwards. It can be discouraging to hear those, but I decided to go on and only listen to those who care and understand. They can say whatever they like, but it's me and my body and my future -- if I get healthy, it's my blessing not theirs, if I get sick one day, it's my loss not theirs as well. I don't want to develop diabetes, cardiovascular diseases, and particularly ovarian cancer, so I'm doing what I feel best for me -- to get treated now (when I go to the doctors sometimes I keep it even as a secret, but I'm learning that sometimes people have prejudices because they just don't understand -- so if I have enough patience, I try to make them understand and learn about this. Sometimes it works, sometimes it doesn't).
In my case I'm also lucky because I have a full coverage insurance and go to the national hospitals here, with internationally-well known doctors. I'm also studying at a university in London and they put me as a student with disability despite my functioning normally in life, but they are kind enough to understand and act according to the Disability Act and recognize this as a disorder.
I'm sorry to hear that you have met with prejudices before and being blamed for it, and being called that it's a made-up illness and fat. It is not professional, uncaring, and judgmental, and narrow-minded of them to call you those, even when they have no knowledge of the disorders. I know there are many doctors out there who aren't familiar with this illness.I hope one day you can meet a real professional who would understand you and your situation. If you want to, there are also many support groups and forums in the internet for PCOS -- there's even a tealawareness ribbon for this disorder!
I hope you can get help from the best people and get the best care one day. You deserve to have them. You have been strong to live with this for such a long time! It must be hard, so thank you for sharing your stories here. Do PM me if you ever need to ask about anything.