Besides hEDS, another condition I live with is Polycystic Ovarian Syndrome. PCOS is a hormonal condition that affects people with ovaries. (I would like to note that not just women can have PCOS, Transgender men can have it as well. For the sake of this post, I am going to talk about women with PCOS). PCOS symptoms can include: cysts on the ovaries, headaches, anxiety, thinning of hair on head, excess hair growth on body, weight gain, insulin resistance, acne, mood swings, irregular periods, infertility, darkened patches of skin, fatty liver, trouble getting pregnant, trouble staying pregnant, and difficulty losing weight.
Personally, I deal with occasional ovarian cysts, I dealt with irregular periods, headaches, anxiety, thinning hair, excess hair, acne, insulin resistance, darkened patches of skin, weight gain and trouble losing weight, mood swings, and fatty liver. There is no doubt that I have PCOS!
I was diagnosed with PCOS after going to the doctor when I was 16 during a 36 day long period. I think I was on day 20-something when I finally went to the doctor about it. I was anemic and irritable, could you really blame me? I was given a prescription for a birth control pill, and told to start taking it that Sunday. Clearly it took about two more weeks for my period to stop. Shortly after I was also diagnosed with insulin resistance/pre-diabetes.
Insulin resistance is pretty much what it sounds like. My body can’t use all the insulin it creates because it doesn’t know how. If left untreated, it can turn into diabetes. I’ve been able to control mine via diet and exercise, though, I did have to use medication for a few years to help my blood sugar. One sign of PCOS/insulin resistance is darkened skin around the neck, under the arms, between the thighs, on the back of knees and elbows, and it can sometimes pop up in other random places. The official name for this is Acanthosis Nigricans. I cannot pronounce it, and I cannot remember how to spell it.
I kind of feel like PCOS should be renamed. It makes it seem like the main symptom of it is cysts on the ovaries, but that is far from true. Some women with PCOS never even get cysts on their ovaries!
PCOS greatly affected my period, even on birth control. Sometimes I would go months without a period, sometimes I’d have 4 periods in a month, sometimes my period would last a month! Annoying doesn’t even begin to describe it. I had a total hysterectomy on August 31st, 2016, so I thankfully don’t have to deal with periods anymore. Though, I still have my ovaries. They’re behaving themselves. And don’t you worry, I will be doing a post within the next few months about my hysterectomy, I just don’t know exactly when that will be.
I don’t really have many issues with my PCOS anymore, well, no internal physical issues. I haven’t had a cyst in a while and I don’t have my period anymore. I do still deal with the cosmetic stuff. Excess hair, acne, hair loss, dark skin patches, excess weight around my mid section. It can really make a girl feel bad about her looks. I have my good days and bad days. Some days I feel confident to leave the house without makeup, other days I don’t feel like I can leave the house without layers of makeup. Some days it can really make it hard for me to feel feminine.
I do still have to keep my insulin resistance in check. I do this mainly through diet since exercise is difficult due to my disabilities, and my body does not react well to medications for insulin resistance/pre-diabetes. I’ve tried Metformin, which helped for a few years until my body decided it was not going to tolerate it anymore. I tried something else, I can’t remember the name, but it didn’t do much. Then I tried a low dose of Victoza, which caused an adrenaline reaction and my blood sugar would plummet because I was unable to eat for 20+ hours at a time, not even liquids. I do really well managing it with diet, though I sometimes wish I had the help of something else just because my weight refuses to budge.
The thing that helps me is that I know I’m not alone in this. My mom, sister, a cousin on my mom’s side, and a friend all have PCOS. I love being able to text my sister “F-K PCOS”, and she totally understands, no explanation needed. I can go up to my mom and ask her if she can pluck that one hair that I haven’t been able to get for days.
PCOS affects about 1 in 10 women, and yet many have never heard of it. If you’re reading this and think you may have it, please talk to your doctor about it. Women with PCOS are at an increased risk for developing diabetes, heart disease, and having strokes. Treatment now can lower that risk, so it is worth finding out if you have it or not.