Have you come to terms with your PCOS?

bec415 · 11-16-2006, 12:12 AM

I'm wondering how the other cysters here view their PCOS. I know it's called a "syndrome" but do you see it as a disease or an illness?

I know that this makes me different from people around me, and has for some time now. The way my body is shaped, feeling lathargic, the other annoying issues like acne and excess hair growth. It's only been a short time since I have really known that it was because I had PCOS that I had these issues, and only about 5 months since I started an appropriate treatment plan to address my PCOS, by going on metformin.

I feel like I'm finally at the beginning stages of accepting my PCOS. I understand what's going on in my body and how to manage it. I have spent thousands of dollars of electrolysis over the years, and my goal was to ultimately clear up any excess hair to point where I would be "normal" - so that I could pretent, and no one would ever know that it was ever there. Now I feel like, I don't want to pretent, PCOS is a part of who I am, it's a part of my struggle and something I'm dealing with. And when I fall in love with "the one" I want it to be someone who I can openly talk about my PCOS with, and not feel like I should hide this part of me in any way.

Have you all come to accept having PCOS and in what ways?

lilybellamom · 11-16-2006, 12:57 AM

I really dont see my PCOS as neither a diease, syndrome or illness. I think my attitude towards it has changed significantly in the last 6 months. I was dxed @ the age of 18, almost 12 yrs ago so I have a lot of time to deal with it. Like you I was put on met and bcp, but it hasnt been until lately that I have realized that I will be free of all the symptoms of this troubling syndrome. the more research I do on the subject the more I have come up with success stories of women who choose not to let the syndrome control their lives and have taken back everything that the syndrome steals from them. each story is different and each women chooses different routes but ultimately they each found what worked for they individually. I have choosen the natural path b/c of all the extra side effects I got from taking met and bcp. It works great for me. My latest success moment was this past month I had a 31 day cycle. I have never had a 31 day cycle. so there is hope for full recovery, but every woman's journey is different. good luck and I hope you can find the right path for you. just dont think of it as a diease or illness but as a hurdle that you can and will jump completely one day!!

foostar · 11-16-2006, 09:01 AM

I see it as a part of me, just who I am. It's certainly not a disease to me, or an illness - both imply it'll go away with a few pills. I suppose that yes, I have come to terms with it because I know chances are it'll always be a part of me (losing weight has never helped my symptoms) and there are positives to be found.

ickle pand · 11-16-2006, 10:41 AM

I don't see it as a disease or an illness - I'm not ill, this is normal for me. I see it more as a condition that I have - it's not normal for everyone but it is for me. Hopefully what is normal for me will change some day and I won't have the symptoms of this condition anymore.

uhohcheerios · 11-16-2006, 10:46 AM

I don't know if I would say that I have "come to terms" with having PCOS. I have it, I know I have, and I know that there is nothing that I can do to get rid of it. I definately don't embrace it though.

I was only recently dx'd, about 6 months ago, and at that time I felt like my world was crashing down. I hated the fact that I had it, I hated my previous Dr who didn't catch it when I was younger and simply put me on the pill, and I hated my new dr for not catching it sooner. I don't like the fact that no one seems to understand the everyday battles that I deal with regarding the symptoms, and the fact that my family seems to be oblivious.

I've made great strides since being dx'd though. I've started Met, I've lost 20 lbs, I understand the why's of my symptoms, and I'm more content with who I am. It's a big relief to me to know why I have all these "weird" things going on with my body. I've also come to understand that my previous Dr doesn't know about PCOS. My parents still go to that Dr for their diabetes treatment, and my Dad mentioned to him that I had been dx'd with PCOS. The Dr. had never heard of it. It is now my mission to make sure that he (and the other dr's in his practice) learn about this, so that other women don't have to deal with going decades without a proper diagnosis.

I guess I'm slowly accepting everything, but I'm sure once Hubby and I start TTC that I will be back to beating my head against the wall!!

ajhyer · 11-16-2006, 11:48 AM

I haven't had any issues with coming to terms with PCOS. I always knew in the back of my mind that something wasn't right, but never knew what it was. When I was finally dxed this year, it was a relief to know that there are reasons why things are the way the are. I now know why I don't get a regular AF and why no matter how hard I tried I never seemed to loose weight.

Then I found SC. Once I started coming on here and learning more it made things clearer. I realized why I felt better when I was pregnant. I totally enjoyed being pregnant. I wasn't as miserable as others I knew and that was because my hormones were finally in better balance.

I do not see this as a disease or illness because like someone before said, that implies it will go away. This won't ever go away and it is something that with proper treatment I can "control".

AudaciousFurball · 11-16-2006, 12:15 PM

When I was first told I had PCOS, I was basically, "ok yeah fine" and carried on as usual. I slowly came to realise that this wasn't the option, and I started to learn as much as I could about PCOS. I wouldn't say I've come to terms with PCOS, but Idefinitely have a much better understanding and control over my symptoms.
Thsi isn't a disease, it's a condition we have to live with, and coping and controlling these symptoms can only make us stronger as women.

carlayvette · 11-16-2006, 12:43 PM

I haven't come to terms with it...I have accepted that I have this condition...They told me years ago that I had it but they never saw cyst...so I assumed I didn't have it...
Now as I have gotten older I have realized that I haven't been able to get pregnant...I am getting bigger, i have AN-which I started noticing at 17 and now I am 27...Its not as terrible as I have seen some cases but as a light skinned person it is noticeable..The excess hair is not an issue because my family is hairy...but I just recently went to the doctor because after 6 months of no meds I had started loosing weight and my cycle was regulated...then in September I spotted, on October 4 I started a period, then on Oct 25 I started another one and am still experiencing it today November 16....They did my ultrasounds...no cysts, no fibroids tumors, etc....My PCP will not presecribe medication because she says I need to loose weight first and she is right I have poor eating habits...I go to the GYN on Wednesday to see if she can help me...I don't want to go on BCP because I want to get pregnant...but my PCP said it is the only way to stop the bleeding...So I am figuring I will wait til Wednesday before I fill it in case the GYN has another option...For the last two days I have been barely eating because I am really down about it...I am drinking protien smoothies and water a salad here and their...And I know that isn't healthy but I am really not happy about this...I am tall so it is hard to tell I am obese unless I am sitting down...BUT every appointment I went to in the last two weeks I see the words OBESE...and I really need a health and fitness plan..I walk and my legs are beautiful - I started doing 150 sit ups per night 2 days ago..so hopefully this will help...I just don't like what it has done to my skin, my fertility, and now my sex life.

bec415 · 11-16-2006, 04:52 PM

"I was only recently dx'd, about 6 months ago, and at that time I felt like my world was crashing down. I hated the fact that I had it, I hated my previous Dr who didn't catch it when I was younger and simply put me on the pill, and I hated my new dr for not catching it sooner. I don't like the fact that no one seems to understand the everyday battles that I deal with regarding the symptoms, and the fact that my family seems to be oblivious."

uhohcheerios: I can totally identify with this, even though I've lived with this for close to 10 years, it's only been a matter of months since being diagnosed. But I have also had a lot of anger towards doctors from my past - as far back as 9 years ago, who put me on bcp's and didn't know enough to refer me on to an endo, send me for any futher testing, seeing a connection to IR etc.

My family is also oblivious to it and even though I'm now informed enough to explain it to them, they don't seem to get the gravitiy of it, what it is and how it has impacted my life. My mother doesn't seem to care about PCOS as a "syndrome" or whatever, she's so stuck on the fact that I have had hair growing in weird places and acne. No wonder I felt like a freak all these years and wanted to cover up and pretent it wasn't as issue.

uhohcheerios · 11-16-2006, 05:29 PM

bec - That's exactly what I've been feeling. I told my parents about it when I was dx'd and they didn't really say much (I thought maybe they were just trying to comprehend it), then a few months ago my mom asked me why I was "taking those pills". I told her they were to help with PCOS, and she was like "Oh, I forgot you had that!" I wish I could just forget that I had it!! Sheesh!!

bec415 · 11-16-2006, 05:36 PM

lol! that deffinately sounds like my mother. But it is really good to know I'm not alone.

Chas1975 · 11-17-2006, 09:49 AM

I am hoping that I can come to terms some day. I am still in the pissed off stage. I hate my old doc for not treating it. For seeing me for over 10 years and dxing it. I went to him when I wanted ttc my dd. He told me then that I may have trouble but to come back in a year if I wasn't pregnant. Luckily it didn't take nearly that long but I wonder what he may have actually done if I had trouble ttc. I probably still wouldn't have her if I needed to wait on him to help me. I actually think being on orthotricyclen helped me conceive. My cycles were so regular and I didn't spot in between on them. I actually felt good. And then I got pregnant and I was exhausted all the time. But she's worth it.

MIKES JULIE · 11-18-2006, 12:25 AM

I have not accepted the fact that I have this aweful syndrome. Everyday I am faced with new challanges physically or emotionally. There are somedays (most days) I struggle just to keep my head up, even when things are going good , I know there is something coming that will drag me down. I don't know about any of you but right now I am having issues that I am just not good enough . I am overweight (loosing but not fast enough for me), I have excess facial hair ( i do go for lazer and I am happy with that but............), I have acne on my chest stomach neck and arms.

I try not to bother anyone with all these feeling so I bottle it up and then when that something comes along to drag me down I explode. I don't feel bad doing so either. I feel like I am trapped in a small space and I can't get out. Does anyone else feel this?

I really feel like I would rather be up there than down here. ( I don't want people to feel bad for me by saying this, I just want to know if it is normal.) I think I am suffering from anxiety (REALLY BAD). Sometimes I feel like I am screaming for help but noone hears me.

Hope these feelings go away soon for me and for anyone else who has them.

Have a great night

(((HUGS)))

Julie

glowingpurpleaura · 11-18-2006, 08:49 AM

I have definatley accepted it i dont see it as a disease syndrome or illness like many other people have said i just figure there's worse things to have so i'm greatful for what i do have

kelliet · 11-18-2006, 09:15 AM

I ignored my diagnosis for nearly ten years. I felt like if I acknowledged it then it was real and it felt easier to live in some weird state of denial. I have learnt that it isnt. I felt like a freak and somehow less of a woman. What I realise now is that is a syndrome not a choice. It isnt something that makes me a freak or less of a woman - it is a medical condition that I do not choose but rather chose me through my genetics. For me this syndrome stikes at the core of my feminity - irregular AF, strange body shape, crazy moods, excess hair etc. Whilst im still peeved about the damn symptoms and have my low days, I now realise that PCOS does not define me and does not need to control me. I felt like I needed a place where I could stand up and say "My name is Kellie and I have PCOS" then I found soul cysters - all I can say is wow, it saved my life.
I dont know if this has helped you but i felt compelled to share

Hugs to you, you are not alone here

Kel