Posts: 300
12/29/11 7:38 P

I personally, have never had a problem telling anyone about having PCOS. I feel like it took a long time to finally get a name for the issues I was having that I wanted to share with others. Maybe by sharing, I would help someone else find a name for the issues they were having. Once you start sharing you have to be ready to give a medical lesson. Most people are not aware of what PCOS is. But, I feel by telling others it also helps me to understand what I need to do to help myself.

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11/13/11 12:53 A

I think it depends on the people in question. I have only told a couple of people about my issues because I was kind of put off by the ones that I told. Even though I am not planning to havr kids soon, the issues about PCOS and infertility are a major concern for me because I really want to have a family. But the people I tried to talk to about it pretty much brushed it off, like whats the big deal since I am not trying to get pregnant right now. I guess its a valid point just not one I really want to hear. So, I dont really talk about it much. From my experience, its one of those things that if you arent going through it personally you just cant understand it.
It has been surprized me how difficult this has been to cope with- and struggling to actually be diagnosed only adds to the frustration. And even with diagnosis, the only treatment option offered to me is birth control pills. And being told to just lose weight, which is like being told to just go out and run 50 miles. Its always kind of taking a chance to discuss personal information with people cause you just dont know how they will react, so its pretty much an indvidual decision.

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10/13/11 3:40 P

I don't feel it's necessary for me to just tell anyone and everyone that I have PCOS, but if my friends ask about things and why I'm at the Dr. so frequently, then I explain the situation. PCOS is just part of my life. A LOT of people have no idea what it is and don't understand the symptoms that we have.

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10/10/11 10:36 A

At first only my immediate family knew about it and I really didn't think it was necessary for others to know but over time it felt like I was keeping a secret (I really don't like secrets they tear friendships apart)
One day my best friend of 10 years followed me into the bathroom (girls never go alone rule) but I didn't notice her until I started to look closely in the mirror and said out loud that I forgot to shave. My friend looked at me like I was insane. She noticed my sideburns and asked if I was a guy. :( I freaked. I ran out of the bathroom and didn't speak with her for a week. But after awhile I noticed that it was stupid not to tell people that are close to you. Now I'm open that I have PCOS and what the symptoms are (I try to keep the whole facial hair out of the conversation) and what it entails to have this condition.
I told my best friend, and a few others but the time and place is up to you. At first I did just randomly blurted out a new topic "Hey I have no period, what about you?" But now I only tell if someone notices me shaving in the bathroom, or when the topic arises. You shouldn't be ashamed of PCOS.
Hope this helped :)

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10/7/11 10:42 A

Being diagnosed with PCOS whether you knew you had it or not can be a lot to deal with mentally. In my case, I always knew I had a problem because of my mother but she never knew what it was called so I did the research for years off and on until finally I had a name for it. Once I had a name I began to tell family about it. It's so personal and affects so much of our bodies why would you want to tell anyone?

Alas, over time, I relented and decided that it was better for me both personally and socially when I shared with strangers and friends. People are curious about it and often times I've found that someone always says, "Hey, that sounds like this problem my cousin has" or "You know, a friend of mines has irregular periods and facial hair too. Maybe she has PCOS." It doesn't feel good to experience PCOS; however, it always makes me feel better to discuss it with people that I meet because it helps them to respect my situation as well as helps someone they may know who suffers the symptoms and doesn't know what to call it.

I would suggest coming to grips with it yourself first before attempting to share it with your friends and just explain to them that you were just diagnosed and that all you need from them is their support not for them to feel sorry for you because you have a supportive network here at SP and you can visit www.soulcysters.net and join in with the rest of us who suffer PCOS.

Good luck on your journey dear.

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10/4/11 4:29 P

I think I fought so hard for diagnosis that by the time I was actually diagnosed, everyone knew- I was having cyst issues monthly and my FORMER gyn said that because my ovaries weren't enlarged, it wasn't PCOS and blamed it on the crohn's disease I have that had been in remission for over 1.5 years at that point. I also went from 160 lbs in July of 2006 to 245 lbs in November of 2006- everyone was asking what was going on. It took until July 2009 to get diagnosed- it was MISERABLE. Now that I've been getting treatment, I've gone from 255lbs in March 2010 to 219 today.

My best friend was already diagnosed, so I knew I could talk to her about it.

Edited by: JOESMASH at: 10/4/2011 (16:31)

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10/2/11 11:22 A

I didn't talk about it with anyone because I didn't feel it necessary. But I don't not talk about it. If it comes up, I do. But I have no shame in having PCOS. It is a part of me.

Each person is different and you have to do what is right for you. Good luck!

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9/30/11 6:35 P

I agree with Reaching here although I don't mind telling people if we get into the topic, it's just become apart of me that I live with.

Posts: 1,482
9/13/11 1:33 P

I was diagnosed about 4 or 5 years ago and I didn't tell anyone right away. I think I had to come to terms with it myself, internalize what it meant for me. Then after a while I started talking about it with my family and then close friends. I now talk about it with anyone who wants to and that I think should know.

It is your choice whether or not you want to tell your friends. If you aren't sure how they would react choose one friend that you really trust and let that friend know and see how they handle it. At least then you may gain a confidant and support. I don't think anyone will think that you are after sympathy or pity, and if you are who cares if that is what you need (or don't). Just trust your gut and tell those you think would want to know.

I will say after years it got easier for me and now it is just part of who I am. Good luck and as always we are here as a group to help!

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9/13/11 11:42 A

Hey ladies!
I was diagnosed with PCOS about a month ago. It seems like I'm going through all these changes, having tons of medical tests done, seeing different doctors about once a week, and my lifestyle has changed - it's a big deal. However, I'm the only one who knows about it (with the exception of my immediate family). I haven't told any of my friends yet, none of them know that anything in my life has changed recently. I'm not sure if I even want to tell them, or how to tell them.

I'm afraid that if I just bring it up randomly they will think I'm trying to get pity or sympathy, but that's not at all what I want. So how would I bring the subject up and tell them?

So I'm wondering, did you tell your friends what was going on? If so, how did you tell them and if not why did you choose not to?


Edited by: MEHEPHZIBAH007 at: 9/13/2011 (11:46)