Hello again!
Welcome to Cysters United, as you can see we have a few contributers posting already, which is wonderful. I really look forward to kicking this blog off into subjects around living with PCOS.
As Barbara mentioned in her post earlier, this blog was borne of a discussion that started by her posting on her personal blog that she wished she could find more real stories from women with PCOS (or Cysters, if you’ve not heard that term before) about every day life. What is available to us are a lot of dry books on the medical statistics of PCOS, which can be terrifying, diet books and fertility information. There is very little out there for women that do not subscribe to the diet/weight loss doctrine, who either aren’t at the stage of their life for having children, don’t want children, or have succeeded in having children. There is very little for the lesbian cyster, the young cyster, the menopausal cyster, the child-free cyster, the the fat acceptance cyster. So we want to create it here.
That doesn’t mean that we won’t be talking about weight loss or childbearing, for a few of our contributors it’s relevant. But it does mean that we will be adhering to the fat acceptance/health at any size philosophies, which I will explain more later, and that talking about PCOS will not just be about fertility.
What I would like to see are you cysters out there that come across this blog joining in with discussions and blog posts of your own. If you have any ideas on subjects you’d like to see us talk about, or would like to contribute a post, please email Cysters United at cystersunited@gmail.com
sleepydumpling
pezzdemon
tlcur107
poohgal79
Autumn
Lake Lady
meknena1
livingwithpcosaleh
Hey Cysters,
I’m excited to follow your (our?) blog here. I must admit that my primary experiences and frustrations around having PCOS have been related to weight and fertility. So, I’m not sure I have much to actively contribute. But, I am anxiously awaiting stories and perspectives from other aspects of the disorder. I hope to be an active commentor!
Mari
It’s our blog Mari, our as in Cysters everywhere! But we do hope to provide a focus that is not available elsewhere, and yes, there is PLENTY available around weight loss and fertility to be found, those two subjects can be left to those that have already done that work. No need to reinvent the wheel so to speak.
I am sure though that those are not the only two experiences you have had, they’re just the most significant ones for you.
Very cool! I’m looking forward to what y’all have to say.
Maybe the cysters can help me. I was diagnosed with PCOS sometime ago, and as a teenager frequently had ruptured cysts, but I’ve gone years without any pain at all until last month.
I was trying to hula hoop and after 15 minutes or so after I stopped I had excruiating pain in my side, the point where I thought I maybe hula’ed something loose. I took some pain killers sat in a hot bath and it started feeling better and I put 2 and 2 together and decided ultimately that I had ruptured a cyst. The question comes because I had similar pain this month, so why now?
I can only speak from experience, but cysts have always been related to my cycle. They rupture around ovulation time for me. And bloody hurt!
I hope one of the other cysters can give you some more information.
The timing I understand, it’s them starting to rupture again that I don’t understand, it’s been years since they’ve reared their ugly head.
They come back for me, new ones every month. It’s not old ones re-rupturing, but new ones forming over my cycle (or the poor excuse for a cycle!)
Cysts are created when a follicle either doesn’t detach to create an egg and/or doesn’t get reabsorbed after your cycle. Most of the time this happens when your hormones aren’t at the right levels. Or at least that’s how I understand it works.
So maybe your hormone levels are changing?
I’ve never had a cyst rupture, and I’m not a doctor, so I really couldn’t say one way or another, but it’s an idea.
Having (what I believe was) a massive cyst breaking was what finally got me the diagnosis of PCOS.
I’d been having terrible abdominal pain intermittently for a while when I was 32, and been to doctors. Nobody could find anything wrong (of course, nobody did any ultrasounds or anything). Finally, one day, I woke up feeling extremely under the weather, and with the area that usually hurt (which I now know to be my left ovary) aching. At 4 I tried to take a nap, but couldn’t because the pain was so bad. At 5:30pm my temp started to rise and went from 97.6 (my normal is one degree below normal) to 104 in 1/2 hour.
Of course, I was taken to the emergency room. They couldn’t find out what was wrong with me and admitted me. They finally did exploratory surgery to find out why I was in so much pain and why my fever was so high. That’s when they found the polycystic ovaries. The doctor saw nothing wrong with that and closed me back up. *sighs*
I’ve found little information on why for some women PCOS is this painful. In 1998 when I was diagnosed, they said that PCOS was absolutely NOT painful, ever, and so the pain in my ovary (because yes, they did at least isolate it down to that ovary being the thing causing me so much pain) could not be related to the PCOS.
I’ve found on my own that if I limit my intake of carbohydrates (and I mean, really limit — 75g a day if I’m not on metformin, 150g a day if I am) helps to reduce the instances of pain. In my body, something about the excess carbs over a long period of time seems to make the cysts get all angry with me, and it’s also a trigger for migraines for me.
Another thing I found helped was taking cinnamon capsules. I took 4 a day (two in the morning, two in the evening) and it helped a lot. But then, cinnamon is an insulin balancer. If you don’t have enough it’ll help your pancreas create more, if you have too much, it’ll help the receptors acknowledge the free floating insulin and receive it so the pancreas doesn’t have to produce so much.
It’s funny how little importance many doctors put on PCOS. In hindsight, I know two doctors thought I had PCOS before I was diagnosed but neither discussed it with me or told me what it was. One doc put me on Androcur, which was a popular anti-androgen medication, which shows me she was thinking PCOS. The other actually said “You probably have PCOS, you need to lose weight.” and left it at that.
Thank God I found a decent doctor who a) explained what PCOS is, b) helps me to find ways to manage it and c) doesn’t believe weight loss is the magic bullet.
My mother sent me the link to your blog in part because I’m struggling with finding women with PCOS that I can relate to. I’m not planning on having children, so I’m equally frustrated by the myopic coverage of this disease.
I was diagnosed 16 years ago (when I was 17) and had few issues until recently. New problems include: sudden weight gain, vitimin B 12 deficiency, diagnosis of rosacea, change in tyroid medication, insomnia, and depression. I’m looking forward to hearing from women on topics other than fertility and weight loss. Thanks for starting the blog!
Yay for your Mum Courtney! Mine always ignores PCOS like if she does it will just go away.
It’s amazing how many cysters come out of the woodwork when you mention the whole fertility/weight loss bias. There are a lot of us for whatever reason aren’t focused on these two things!
I’m right there with you about the fertility thing Courtney! I’m only 21, I’m not ready for munchkins yet.
I’m also with you Courtney (and pezzdemon) I have been married for 2 years with my partner for 7 years and little ones are very low on our list of priorities.
I really look forward to this new blog!
Thank you for creating this community! I’m looking forward to the discussions and connecting with other cysters!
Thanks Sweetnfat – we figured if we built it, y’all would come!
I am very excited about this blog. I have been diagnosed with PCOS and Insulin Resistance. When I look back, I have had this for MANY years…..I am 47 years now.
So, I’m going to the doctor on April 4th and I am about to tell her that I am getting off the “weird diet” rollercoaster. She wants me to severly limit my carb intake so that my weight will go down (I’m over 300).
Here’s the thing, I’ve been doing weird diets for over 40 years and I truly believe that is why I weigh over 300 pounds at this point. I am just not willing to do anything weird anymore. My goal is to try and develop a healthy relationship with food. I have never had one, as I’ve been dieting since well under the age of 10 years old.
The doctor had me on metformin and byetta. You would not believe the side effects I was having. I contacted her and she told me to get off those meds until I see her again. I’ve had the blood drawn and await my appointment in less than 2 weeks.
I don’t have all the “normal” symptoms of PCOS – no facial hair, I have had one successful pregnancy and one miscarriage and I have my period every 28 days and I am not on birth control pills. But, I definately have all of the other symptoms: the weight issues, the pain during menstral time, etc., etc. So, I’m rather abnormal in the classic symptom category.
So, what I want to know is if any of you have had a successful doctor visit, if you’ve refused the dieting advice and what is it that your doctors told you to do? The last visit I had with her she told me that if I didn’t get some weight off, I was going to die of a heart attack. Of course, she hadn’t checked my heart, so how would she know? It was a scare tactic.
I would appreciate your input. Thanks and have a great day everyone.
Continuing on with my post above…..
Oh yeah….I am on thyroid meds – synthroid.
I am in the same boat as “Sleepydumpling.” The doctors knew I had PCOS and Insulin Resistance and not one of them ever mentioned it to me.
They always say – if you lose the weight, you will feel so much better. How the hell do you lose the weight and keep it off if you have PCOS? I don’t get it.
They just want the weight loss. I have lost weight so many times, I can’t even tell you. My last round, I lost 152 pounds and my body just put a screeching halt to the weight loss. I was stuck in the 190′s for 2 years straight without any loss (still doing Weight Watchers during this time) and then it all came back again. I’m not going to go through this process anymore. The emotional turmoil is just more than I can take. It’s a horrible feeling of complete failure!
Thanks for the comment, La. I’m over 300 myself also and have been fighting the diet yo-yo for years. Only fairly recently have I given up the idea of it. That doesn’t mean that I won’t try to eat healthy or exercise, but I’m not going to put any worth on what the scale says.
I have been given the same speech of “lose weight or die” by my Dr., and I agree that it is a scare tactic. I have not confronted my Dr. or refused any dieting advice though. One of the other girls, especially Kath (aka sleepydumpling) may have more experience in that area.
Anyway, we’re glad you found your way here.
You go La! You’ll find that Kath and I are Health at Every Size (HAES) advocates. She’s been at it much longer than I have though. And science has proven that diets don’t work, but the people profiting from the diet industry kinda hush it up with their own research, that they’ve funded. But the problem with their research is it only lasts maybe a year, and they tend to pick and choose what statistics they show you.
I haven’t had to tell my doctor off about my weight because she’s never mentioned it other than in passing. Like when she tested my cholesterol levels and suggested I start on fish oil and mentioned that losing weight would help too. On the whole telling me to lose weight thing my family is worse. I get it from all sides, if my knee is a little sore “It’s because you’re too heavy!” or if I dress up “You’d look so pretty if you’d just lose your weight.”
Anyway, welcome aboard! ^_^
Hey hon! Great to see you over here too.
I will blog up my history soon, but I can honestly say that giving up the diet bullshit hasn’t made my PCOS worse, in fact I am pretty sure it has made chunks of it better!
And I did lose the weight… a LOT of it… and my symptoms were the worst I ever had them while I was at my lowest weight. Go figure!
Glad to be here guys. I’m looking forward to sharing information and swapping ideas with women who are actually in the same boat as I am. Thanks for being here for all of us!
I love this blog already!