Relationships May 2, 2010

So I’m sure many of you all have been in or are in relationships. Have you had to suffer through his/her family making comments about your weight? I know I have. My own experience was, I sent this old picture from way back in high school to my boyfriend. He’d sent me one of his earlier and I figured I’d reciprocate. Well he ended up showing that picture to his mother. Who in turn remarked on my weight and how it’d make it hard for me to have children. She didn’t tell him this to his face until much later, but I heard it from his brother who I’m friends with. Remember I have yet to meet this woman yet. Eventually when my boyfriend was able to get leave to visit she told him what she thought and he I guess got a little upset at her. And he was hesitant about telling me.

Unfortunately this is probably going to make me a bit nervous when/if I meet his mother at some point. Because I know she already has a less than happy opinion of me based on a photo that is something like 5 years old, and from before I was diagnosed. And in that time I lost a little weight in the areas that I needed to so I have a woman’s figure. I won’t say that it didn’t hurt hearing about this but I can roll with the punches. How about you? What have you all dealt with when being introduced to your significant others family?

Barbara

The touchiest subject April 1, 2010

While commenting on a previous post, I had a thought. (It doesn’t happen often people, so hold on tight. lol)  Why is it such a terrible, disgusting thing for a woman to have excess hair? It’s treated like it is the most disgusting, unflattering, unfeminine thing out there, when in reality it is the most common thing we deal with!  I’m not just talking about us cysters having to deal with it either, I mean all women. Yes,  because of PCOS we have more of it, but it’s a “problem” that almost all women deal with.  I’ve never met a girl that didn’t have to shave/pluck/wax/bleach something.  So my question is, why is it such a bad thing?

I’m sure I am not alone in this, but I was treated horribly because of having a little facial hair.  I have been stared at, teased, call terrible names, and treated as a freak.  Most of this treatment happened to me in high school, but it wasn’t only by fellow students.  I was lucky to have the most supportive mom in the world, who assured me that I wasn’t a freak like people said, but that I was a beautiful young girl.

Even now it’s hard to talk about, but I won’t let the biases of our culture keep me from denying who I am.  I have PCOS, I’m a cyster, and I have excess hair.  Yes, I have to pluck and shave more often than normal, but I have accepted it.  I have a wonderful cysterhood of friends that I can talk to, and whom I know are dealing with the same things.  I am not unusual. I am not a freak.  I am a woman dealing with PCOS, and I do the best that I can.  If only all of us could learn to accept this.  Just imagine how much easier life would be.

A Round Peg in a Square Hole March 28, 2010

My story is a little different to the other ladies in that I’m not centered around fertility.  I am also different to a lot of other cysters in that I do not believe that weight loss is going to either fix my PCOS or change my life.

My name is Kath, and some of you  might know my other blog, Fat Heffalump, which is a fat acceptance/body positivity blog.

I am 37 years old, single and what I like to call a Super Fatty.  That means that in the redundant BMI terms, I am morbidly obese.  However, if you knew me, you would know that there is NOTHING morbid about me (well, maybe a little bit of morbid when I’m really hormonal and my work is getting on my nerves, but that happens to the best of us).  I am just a very fat woman, and that’s where my body has decided I am going to be, despite a lifetime of diets, crazy exercising and every medication and wacky weight loss plan there is.

The first time I presented to a doctor with symptoms that I now know are PCOS symptoms, I was 12 years old.  I had gone from a “normal” sized child at 11 (though I was almost my adult height) to a fat girl at 12.  I had violently painful, irregular periods, and when I saw the doctor he just suggested I should lose weight.

Believe it or not, I did not get a formal diagnosis until 20 years later, at age 32.   Despite presenting to doctors time and time again with various symptoms that I now know are typical PCOS symptoms.

Almost always the “solution” was to lose weight.  One doctor, when I was 19 years old and went to him because I’d been bleeding full, extremely heavy period for 18 months actually said to me “Lose some weight, find yourself a fella and come back when you want to have babies.”  Nothing to address the massive menstrual blood loss, the rampant anaemia, the physical pain and the fact that I had a terrible quality of life because I was dealing with heavy bleeding every single day with no respite.

The irony is, when I did lose weight, and a LOT of weight (about 55lbs), my symptoms only got worse.  My periods were so painful I was in agony, though they only turned up every third month or so.  I had really bad skin and hirsuitism.  And the depression… God the depression was at it’s very lowest point when I lost that weight.

Of course, I put the weight back on and then some (despite having an eating disorder and being on crazy exercise binges) anyway, as extreme or yo-yo dieters almost always do.

So there came a point where I had to deal with my self esteem and depression first, more than any of the other symptoms.  I had to learn to stop expecting to meet some kind of physical ideal, and learn to value myself for other than my body and my breeding ability.

I have been learning to love my body for what it is, regardless of the fact that it doesn’t behave like most other women’s bodies.  I value the body that propels me through life, that does pretty much everything I need it to do, despite being a Super Fatty.  Believe it or not, I really feel that I am at my healthiest right now, despite my body being a very fat one.  I’m strong and enduring, I feel good and have good energy most of the time, and all my vital numbers are good.

I’m working to give up all the disordered eating and exercising habits I have had for most of my life.  It’s not easy, but it gets less difficult a little each day.  I am learning to listen to my body and nourish it with what it asks me for.  It asks me for what it needs if I take the time to listen to it.  If I don’t listen to it, it gets sick, lacks energy or breaks out in allergies or acne.

I am a single woman at 37 and not in a position to have children.  One day I would like to see that change, but it doesn’t make me less of a woman to be childless and single.  It doesn’t make my health less important than women who are trying to have families.  It doesn’t mean my quality of life should be any less, should be diminished because I am not breeding.  I am not deficient or defective because I am childless.  I have plenty to give to the world even though I am not giving it children.

I know there are many, many other cysters out there who don’t fall into the weight loss and fertility boxes when it comes to their needs around living with PCOS and I want to hear from these women.  I want them to know they are valid human beings who deserve good health and good quality of life too.

It’s tough being a Cyster March 27, 2010

It’s tough finding out you just lost a baby when you thought it was “just another period”  The emotional impact is hard…  but I think it’s even harder on our partners.

Having had 6 miscarriages in the same manner, it’s a little shattering when I *do* get a period.  That little voice in the back of your mind wonders…  is it a period…  or another miscarriage?

Fortunately, my last miscarriage was in 2005, but 5 years later, I still jump when I see blood.  I find myself mentally checking back all the symptoms I *may* have missed.

Even if I find out I’m pregnant (fingers crossed for the blood work two weeks from now) my husband doesn’t feel he will get excited until he sees that “little dot on the screen.”  Each miscarriage, even though he kept up a tough exterior and puzzled along with me why we couldn’t carry full term let alone possibly past the first month (keep in mind, since I have PCOS and get erratic periods, it’s hard to pinpoint the date let alone month of conception) I think that because he loves kids so much and wants a family also, it hurt him I think as much if not more than it hurt me.  We wondered which one of us was the “defective” gene.

All these hurts and now I fear that when I *do* become pregnant…  we will likely be too scared to be excited.  I’ll be bouncing off the walls happy and excited…  but he will likely be the “stay grounded, don’t get too excited until it’s in the safe and clear zone” one.

I sure hope I’m wrong.

Dealing with family March 27, 2010

This obviously doesn’t apply to all of the cysters, but I’d like to talk about the issues of dealing with PCOS and our families. Most of them don’t understand, at least in my life it’s true, and don’t try to understand.

Mainly my frustration at the moment is with family and the issue of infertility. Like I said, not all of us are facing this, but many are. It’s to the point of wanting to avoid family gatherings so I don’t have to face the questions of when we are having children. I’ll admit that I haven’t shared my PCOS with ALL my family, as I don’t feel it’s something they ALL need to know. But even worse than the family that is ignorant to your condition, is the family that knows about it and pretends they understand.

I mostly deal with this from my in-laws. I am the only adult, married person in that family that has not had a child, and for that I am viewed as an outcast. I am ignored when the talk turns to children, as it always does, and even worse is when they openly stop talking about it for fear of hurting or upsetting me. While I appreciate that they care, I think it makes the situation worse. Whether or not I am trying to have children is my and my husband’s business, and I don’t feel the need to share it.

I’m sure that I’m not alone in this frustration. I’ll admit that this blog post may seem like more of a rant, but some days we just need to rant.

Diagnosis Frustration March 24, 2010

While commenting on a previous post, I remembered back to when I had never heard about PCOS, and was just a confused teenager in high school whose friends had all gotten their period and I hadn’t.  On top of that, I had the joy of little hairs springing up where they shouldn’t be.  As if the teenage years aren’t awkward enough!

Eventually I had a talk with my Mom, and she took me to the doctor.  After running tests and discovering that my hormones were out of whack, I was sent to an endocrinologist.  This awful doctor told me to lose weight, like I had never heard that before as a chubby teenager, and prescribed birth control pills to me.  Well, the pills made me so sick, and most of my mornings were spent throwing up in a bucket on the way to school. (Sorry to gross anyone out.)  When my Mom called and spoke to the Dr., her response was that I needed to toughen up, and she refused to change my medicine, or even go another route, even though the BCP did nothing to start my period.  Thankfully my Mom never brought me back to that doctor. It was years later that I found my wonderful Dr. that diagnosed me with PCOS, and actually sent me to a specialist that truly understood.

A big part of this blog is for those that have PCOS, have recently been diagnosed, or think that they may have it.  My advice to you is that you don’t let anyone tell you to “toughen up” or tell you anything that you don’t like or agree with.  There is a lot of ignorance out there about PCOS, so please do your own research, ask questions of fellow cysters (like us, ahem…lol), and most importantly don’t give up.  The ladies of this blog know first hand the frustrations that come with PCOS.  Just know that you are not alone, and we are always here for advice, or questions, or just to listen.  We are not doctors and may not know all the answers, but we would love to help you find them.  That’s what we’re here for.

Hello! My intro… March 21, 2010

Hello all,

My name is Terri, and I was diagnosed with PCOS in early 2002. I was still somewhat a newlywed, married in October 2000, and was having my lovely yearly exam when my OB/GYN said that she was sure I had PCOS, and told me to search the internet for symptoms and it would make sense to me. Not much info was available then, not that a whole lot has changed, but once I did get a little info about it, and started hearing all the many symptoms or PCOS, I knew I had it before any test confirmed it. At this same visit was when my Dr. so cheerfully told me that it would be next to impossible to get pregnant, which is not something a newly married woman wishing to start a family wants to hear.

As many of you may know, that diagnosis comes with shock, fear, sadness, and many other emotions. Even now, 8 years later, I still have issues accepting it. I spent a lot of time researching this disease, and while doing that I stumbled across many other women, or “cysters” that were dealing with the same things I was. So for those that may have just been diagnosed, there is a wonderful cysterhood of support out there for us. I personally have only made it through at times through the support of my cysters. If there is one thing I can tell you about PCOS, you are not alone.

I hope we can be of help to some fellow cysters out there, or even help someone that may live with or know someone with PCOS. It is more and more common these days, and I hope we can shed a little light on that using this blog.

Terri