Are you embarassed to tell people that you have PCOS?

ivy1 · 07-27-2005, 12:14 PM

I'm embarassed to tell people, isn't that awful of me?

No one knows except my husband, my mom, my sister and my in-laws. Everyone else, including my close friends don't know. They know that I've been trying to get pregnant for over a year now and I know that they are all wondering what's wrong but I won't tell them. One of my closest friends said to me the other day that maybe since I'm not pregnant yet I should go and get some tests done to rule out the chance that something may be wrong. I told her that I would eventually go for tests, even though I've ALREADY had all the tests done (I've been diagnosed with PCOS, I'm on metformin, I've tried a variety of fertility drugs, had 3 IUIs, had ovarian drilling done etc. etc.). But I'm still not comfortable with telling her or anyone else that I have PCOS.

I'm embarrassed that I have an illness that causes acne, excess hair growth, and an imbalance in hormones causing more male hormones to be present.

Do any of you feel this way too?

Suzi33 · 07-27-2005, 12:24 PM

Quote:

I'm embarrassed that I have an illness that causes acne, excess hair growth, and an imbalance in hormones causing more male hormones to be present.

I also feel this way. I have been DX'ed for about 3 years now, and just told my SIL and MIL about it. They have no clue what it does, and I don't want to get into details because then I feel people will look at me differently, kwim? I mainly told them because I have been so depressed and so down on myself that I have barely spoken to them in about 2 months. I wanted them to know it's not them. They were very supportive and tried to make me feel better. It was nice to know they cared. I don't like people knowing my bussiness, so I don't tell anyone unless I feel it's necessary. I don't think it's awful that we feel embarrased, but we really shouldn't! We wouldn't feel embarassed if we had Cancer, so why this? Because it can ruin your looks, and because those of us who are overweight, know very well that people think there is nothing wrong with us, that we just eat too much! *SIGH* We can't educate everyone, but we need to try not to feel ashamed of ourselves. I'm trying to change my way of thinking, but it's hard, mainly when society tells me I have to look like Halle Berry in order to be liked. We must find it within ourselves to be happy and live our lives, I'm just finding that incredibly hard to accomplish.

Suzie

heather090702 · 07-27-2005, 12:34 PM

Nope, I tell everyone lol. I guess I do it because it explains my weight and my weight is an embarrassment to me. I also do it because PCOS needs more exposure.

It is a personal choice. It is your body and you don't need to share anything you don't want to!

Heather

choirmissy · 07-27-2005, 12:35 PM

Actually, no. I don't have a problem telling people because so many people have never heard of PCOS. I don't go up and tell people on the street, but 90% of the people I have told have no clue what PCOS is. I do wonder if my lack of hesitation stems from the fact that I don't have problems with hair growth. Most of my problems are fertility and insulin related.

Rozlynn · 07-27-2005, 12:46 PM

I have no issues with telling people. If I could I would stop every stranger on the street just so they know it does exist. I have felt so aweful for so long, acne, hair growth/falling out, my wieght issues, mood swings and everthing else that I want people to know what I went through to get my answers. If I can help one other person understand what is going with thier bodies that will be good enough for me.

Another note...I made it clear to tell my DB certain family members so if I do have infertility problems I won't get ...It will happen in good time...God will bless you when its the right time...So instead I have set them up for the worst case scenario.

grlnxtdr · 07-27-2005, 12:52 PM

I just got dx a little over a month ago. I have told a lot of people, most of my friends know, at least the good ones. My mom, stepmom, brother and SIL also know, but not all the details of everything. DH doesn't want to tell his family at all. He says it isn't any of their business. I wonder if he is embarressed. At first I was so like holy crap that I told everybody and now I am sort of wishing I could take it back from some people. I guess I just don't know how I feel about it all the time.

loriparks · 07-27-2005, 01:23 PM

I'm not really embarrassed to tell people. I just don't think they understand. I told my dad and stepmom and they really did'nt understand. My dad's face when I talked about cysts was like I was telling him I had cancer or something! Then after I explained more he was like " So you need to lose weight, huh?"

My husband is the only one that really understands besides you ladies.

bbro · 07-27-2005, 01:27 PM

Actually, this is something that I have been struggling with. I don't really like telling people about it. Mostly just my parents and close friends. My mother told my cousins so I had to explain it all to them so I am sure that my entire family knows. I was so mad that she said something because I am not real close with them so I don't like them knowing anything about me. I think it is more a personal thing. I am still coping with having it so it is harder to talk about it, I don't like too unless it is with certain people (3 to be exact)
I am hoping that with time it will get easier because there is nothing to be embarrassed about. All the side effects that happen are because we have an illness, not anythin we did, ya know?

kricket · 07-27-2005, 01:32 PM

Ivy,

PCOS is a nasty, nasty thing. Beyond the physical ramifications there are the emotional ramifications. The best advise I can give is to come to terms with yourself and let the others hang!

I went through the fertility thing myself, so I know how you feel about not wanting to share. When people ask, you might want to just give them something they aren't expecting - make a joke about practicing a while before you enter the big event; tell them you have a team of professionals standing by; or just tell them that you and DH have decided to wait. If this is a very good friend and you don't want to be so off hand with her, you might want to just tell her that you are working it out and that you would rather not talk about it.

Sometimes the las suggestion is all that is needed to get someone to stop asking questions. They probably aren't meaning to be intrusive, they just care about you.

Hang in there!

girlie · 07-27-2005, 01:33 PM

I don't mind telling people at all. I just tell them what it is and it's surprising how many people have the same problems even w/o pcos. I don't go into the details of the hair, I just make a joke about getting hairier as I get older and every woman chimes in with a story about unwanted hair on themselves. Or they'll tell me other woman problems they might have. No big deal whatsoever.............

Dazee52 · 07-27-2005, 01:34 PM

I have told alot of people. I think it's also a way of healing from wounds from years ago. I was teased horribly all my life for the physical attributes that I had not control of.

For the most part, people are just sad and are like wow you wont' be able to have kids....that leads into a whole other discussion.

I think the worst was my ex hairdresser......She kept commenting on how thin my hair was and how much facial hair I had. (i use creams and wax as much as I can, but you know sometimes your skin just needs a break!!). I tried to explain to her my "condition" and each time I went back it was another comment on how thin my hair was!!! So needless to say...I d'nt see her anymore haha.

My DB has been very supportive. i was very upfront with him when we started getting serious. I told him him I may have problems having children, and his response was so we adopt. I feel very blessed to have him in my life.

It's hard because sometimes you don't know what to expect when you explain PCOS to others. I have to agree with some of the other girls....getting the word out is important. Many people are blind to this. I see women all the time who fit most of our characteristics.....and the only thing that goes through my mind is.....I wonder if they have seen a Dr, or do they know they aren't alone in this.

this site was one of the many blessings I found after I was diagnosed. Just that feeling that someone else understands, after years of feeling alone and ugly. You girls are the best!

VivC · 07-27-2005, 01:37 PM

Interesting question. I'm not embarrassed to tell people that I have PCOS. But I AM embarrassed to talk about the symptoms - the excess hair, weight, high testosterone. I usually just say it's an endocrine disorder that can cause serious health problems and/or infertility. If they ask for details, I tell them that following a strict diet, exercising regularly and taking medication keeps it under control.

Maybe once I've finished laser hair removal, I won't be as embarrassed. I know that the excess hair is the worst symptom for me. I can cover up acne, but hair removal makes me feel like a man!

I cringe at the thought of meeting somebody new if my marriage doesn't survive. I was diagnosed AFTER I was married, so hubby didn't have the opportunity to run away. But he did give me a VERY hard time about the infertility, and about losing Rivi. So I'm afraid the next guy will think the infertility is a deal-breaker, too. I KNOW there are great guys out there, but I haven't had the best luck finding them in the past!

Rebecca527 · 07-27-2005, 01:42 PM

I'm not embarrased to tell people that I have it...just the opposite in fact. I sometimes tell way too much about it! I started to get more vocal about it at work when it came time to TTC, since I'm such a psycho on fertility meds! Most of my family knows about it and all of my friends know about it, but it still boggles my mind that most of them still say the insensitive things about TTC...the ones we all get. But, I just have to remind them "Hey, I'm dealing with infertility here, give me a break!" A lot of them know that it's really hard for me, so most of them are trying to be as sensitive and helpful as possible, but they really don't understand. They try though, and that's what counts.

BlueAngel22 · 07-27-2005, 02:08 PM

It's not awful at all that you feel embarrassed. It makes me a bit uncomfortable to tell new people as well. I think part of it is that little voice in my head saying, "You could have prevented this if you would have taken better care of yourself." I know that's unfair to myself, but it's a thought that I battle every day. I guess I'm afraid that others will tell me what I'm trying to stop telling myself.

I recently ordered a PCOS T-Shirt, and have been wearing it to work out at Curves. I must admit that it took a lot of talking myself into it to wear it the first time, but I'm glad I did. I still feel a little self-concious when I notice someone reading it, but I know that just by wearing that shirt, I am increasing PCOS awareness in my own little way. My hope is that someday, someone who needs answers will ask me questions and I'll be able to help them.

Jen K · 07-27-2005, 02:16 PM

Hi there,

I typically do not tell many people that I have PCOS. But, it's definitely not because I am embarrased about it. For me, it's more that it's a personal thing that I don't necessarily want/need to share with everyone I know. The people who are closest to me (family/friends) know all about it, but I don't talk about it at work, for example, because there's really no need to. So, I guess what I am saying is that I tell people on a "need to know" basis.

Jen K