PCOS - Embarrassing?

[the-fee-fairy.livejournal.com]

So, i don't know if anyone else has been watching it, but tonight, on UKTV Style, there was a program entitled 'Embarrassing Illnesses'.

There was a couple on there, and the woman had PCOS, Endometriosis and an Underactive Thyroid.

Am i the only one who feels that none of these illnesses is embarrassing?
I have PCOS and i don't find it embarrassing.

They said that they found it embarrassing to tell people that that's why they didn't have children...

I don't have a problem with it, i come right out with it.

I suppose i just wanted to know whether i was the only one annoyed by this concept - the idea that an infertility problem is 'embarrassing', and as it is a women's health issue, and i know that some people in this community also suffer (i hate that word!!) with it too, i wanted to canvas opinion.

So:
PCOS - Embarrassing? Discuss
Endometriosis - Embarrassing? Discuss
Underactive Thyroid (or indeed, any thyroid problem) - Embarrassing? Discuss

I really would like to know others' views and know whether i am overrreacting by being annoyed.

Comments

[lunarei.livejournal.com]

Uh, yeah, I don't find it to be embarassing at all. It's not like she has a giant sea serpent in her vagina that keeps eating all of her eggs. If she did, it MIGHT be embarassing. But only if the sea serpent continuously listened to Enya.

[scarsnsouvenirs.livejournal.com]

But only if the sea serpent continuously listened to Enya.

HAHAHAHAHAHA! Brilliant!

I also agree with the rest of your comment...but first things first, you know?

[cry-havoc.livejournal.com]

Both my sisters, mom, and aunt have Endometriosis, and none of them have ever been shy or embarrassed about discussing it. One of my sisters isn't able to have children anymore, and had none when it was still possible, so she's not EMBARRASSED, but upset by it. She avoids talking about it because it's painful for her. She really wanted children, but the fact she has endometriosis does not embarrass her.

[lisamaria.livejournal.com]

i would think that there are things associated with pcos that are embarrassing. i am all about my period, but if i am having periods so heavy that i'm bleeding through my clothes every 2 hours, i'd be embarrassed that people are seeing my menstrual blood on my clothes. if my hormones were causing me to have a beard, i'd be embarrassed by the beard.

if i had an underactive thyroid, and gained 100 lbs, and couldn't control my weight, i'd be embarrassed.

i'm not saying women should be ashamed of these things, i've been 100 lbs overweight before. but that was my own problem and i corrected it, somewhat. but all of these things that i mentioned are part of the diseases you mentioned ARE things that are commonly embarrassing, so i think that in that sense, yes, your annoyance is an overreaction.

[the-fee-fairy.livejournal.com]

I can see how the physical side of things may be embarrassing. I should have put in more detail. They were discussing how telling their friends that the couldn't have children and why was embarrassing.


Thankyou for your Point of View.

[lisamaria.livejournal.com]

well if its only those things, then that's silly. i can see how people might BE ashamed to be 'imperfect' but truth be told, everyone is. but that shouldn't be the assumption.

[ncsu-lady.livejournal.com]

Thats HORRIBLE.

I find it upsetting that I have endo and may never have children. Yes it will be difficult to watch both myself and my twin sister struggle to concieve. I was already told once that I may never have kids and I was only 17. I am going for optimism.

Its painful mentally for myself, my fiancee and my family to deal with this disease every day when I and my sister am in constant daily pain.

Its no one's business why they do not have children. She has several unfortunate medical problems that have prevented them from having kids but they should be embracing a new aspect on life and looking into adoption instead or at least focusing on helping her improve her life.

It is unfortunate that they feel embarrassed and I am saddened for them and angry because this projects the WRONG image to those of us suffering.

[the-fee-fairy.livejournal.com]

i was 18 when i was told...

I understand your fears.

[ncsu-lady.livejournal.com]

My current doctor thinks that while it may be difficult, she is hopeful. Obviously I'm not going to count on anything just yet. However, it has been almost 7 years and lots of things have changed in the reproduction field. Worst case, my fiance already said he was open to adoption.
But yes, its upsetting to be facing the world, and told you can't have kids. I will admit I did not tell people, maybe I was embarrased, but mostly, did they really need to know?

I guess I can see somewhat about being embarrased but, really, its more just upsetting to be asked 'oh you have been married X years, no kids?' and honestly they should either not volunteer the info to strangers, and their family/close friends should be understanding and not let them be embarrassed.

Otherwise, I see and understand the comments about hair and such growing abornmally.

With endo, I *look* normal. Unfortunatly, this is partly a problem, if I looked sick, perhaps people would understand why I need work off due to 'cramps' and not be told to 'suck it up' and so on.

[the-fee-fairy.livejournal.com]

I wish you all the luck that you will need.

[preternatural.livejournal.com]

I think the idea that they're embarrassing - the first two, at least - stems from the notion that anything to do with reproductive organs is private and having to discuss problems with them can be, well, embarrassing. Kind of like how, in high school, all you had to say to a male teacher was that you had "girl problems" and you got a hall pass with no further questions. (At least, that's how it was back when I was in high school. Maybe teachers have become more relaxed in the last decade.)

I don't think they're embarrassing, but I see why people do - after all, how many people actually refer to their own genitals by their proper names? Or teach their children the proper names? There's still a lot of euphemizing going on, so it doesn't surprise me that illnesses related to those body parts many of us won't say, would be embarrassing.

(Out of curiosity, was prostate cancer on that list as well? What about rectal problems? I'd be more embarrassed to discuss an anal fistula than I would the ones you listed.)

I have no idea why thyroid problems would be embarrassing.

[the-fee-fairy.livejournal.com]

There was a woman with a thyroid disorder, and a woman with a skin problem, but i didn't catch all of the disorders on the show. There were a few men.

[molestahlestah.livejournal.com]

That child in your userpic is absolutely precious!

[preternatural.livejournal.com]

That's my son - thanks! I think so, too. Usually ;)

[molestahlestah.livejournal.com]

He does look like a bit of a troublemaker- just that devilish look in his eyes!

[maery.livejournal.com]

Thyroid problems can be embarassing. I went from 114 lbs to 200 lbs in a little under a year because of one. I'd cry randomly, felt like my life was falling apart, and then the severe acne started.

When you go through things like that, it's embarassing. It's like your out of control, and just can't help youself. But you're more embarassed by your inability to control it then the disease itself.

Thankfully, in the case of thyroid problems there are major improvement in medication and lifestyle plans so people don't have to live with the side effects as much anymore.

[preternatural.livejournal.com]

A lot of commenters seem to interpret "embarrassing" as "a disease that causes effects by which I am embarrassed," e.g. weight gain, acne, etc. This is interesting, because I always saw the concept of "embarrassing diseases" as meaning diseases you don't want to talk about because the reaction of others will be negative. (e.g. "Ew, I don't want to hear about your anal fistula, that's gross," "I don't want to hear about your infertility trouble because I'm intensely uncomfortable discussing genitalia and/or menstruation," or "Actually, I DO want to hear about your STI so I can gossip all over the place about what you've been up to!")

I think both interpretations make sense, but I don't think that encouraging people to be embarrassed is healthy, either way!

One of my sisters has Hashimoto's, so I know about the weight struggles and such through her experience - I'm sorry to hear of your struggle with it. I have depression, and that I would definitely call an embarrassing illness, if I didn't take issue with that label ;) Between the misunderstanding of depression (no, I can't just snap out of it, no, I'm not making it up) and the external indicators (I have a long history of self-injury, and if you want something embarrassing to explain, try SI scars :P), it's something I don't really like to discuss often.

I have no idea where I was going with that...oh, well.

[lindsey-nichole.livejournal.com]

I have endometriosis and have never been embarassed by it. In fact, almost everyone I know and am around more than once know about the disease. I'm very vocal about it and feel that educating people is the only way we will eventually find a cure or some other alternatives to relieve pain besides the ones available now.

I'm actually very irritated by the title of the show and if there is any way to contact them I would love to have it.

You're right to feel the way you do. And there's absolutely no reason to be embarrased by any of these things.

[the-fee-fairy.livejournal.com]

I'm looking on the UKTV style website as i type (well, not literally, i'm looking at this window, but you get the idea...) for a contact address.

It's yet another reason why i will never watch UKTV style again i think...

[robynchick.livejournal.com]

Many people find virtually anything to do with their bodies embarrassing. We're lucky I suppose...

[orangewrath.livejournal.com]

I wanted to say the same thing!

I'm so glad I found this community. Cheers to vaginapagina! :D

[the-fee-fairy.livejournal.com]

Found a link to the show

http://www.uktvstyle.co.uk/index.cfm/uktvstyle/standardItem.index/aid/538614.shtml

[fallen-metatron.livejournal.com]

I don't know if PCOS is embarassing in itself, but what I do find embarassing is the hair issues. Too much hair where there shouldn't be, and not enough where there should be.

But the PCOS itself, as it relates to fertility... I don't think that's embarassing at all. It's not like you wake up one morning and decide "Hey, I think from now on, I'm gonna just go ahead and be virtually infertile!"

Being embarassed of having PCOS would be like being embarassed of having cancer. :|

[the-fee-fairy.livejournal.com]

I can relate to that, but a quick go with the wax, or the tweezers and issue over for me!

It's that one hair that grows on my chest that does it...

They're trying to 'cure' her fertility problems with diet apparently.

[the-fee-fairy.livejournal.com]

i used your last sentence as a quote on a message board. I hope that's ok...it was a strong message and your quote fitted in perfectly.

[fallen-metatron.livejournal.com]

Oh, not at all!!

[fallen-metatron.livejournal.com]

Oh, for me, my hair problem is much worse, which is why it's so bad. If it was just a matter of a wax, I doubt I'd think anything of it!

But I know for me, personally, when I lived in Alaska, I had a very good diet because I was making good money, so my hair problems lessened, and I actually got my period once every other month. So that might not be a bad idea. I don't think it'll fix it, but it helped me! Now that I'm back in florida working a shitty job, though, I eat crappy, and all the same issues are back :(

[theboleynorchid.livejournal.com]

The only aspect of PCOS I find embarassing is my facial hair. >.> I hate shaving/waxing/bleaching it, and I hate the stubble... I shrink away whenever my boyfriend touches my face. Yeah. It sucks.

But, past that, the infertility doesn't bother me.

[princess-kessie.livejournal.com]

I share that pain. I am sooooo tired of having to remove it daily - after 22 years of excess facial hair, it is wearing a bit thin. I have considered laser treatment, but it is cost prohibitive in Aus with no guarantee it will work, and no guarantee it will not scar. Too risky for the face, so I put up with the embarrassment of male-like stubble/5 o'clock shadow...

[fshk.livejournal.com]

I don't see why those would be embarassing, either. Actually, there's an article in this month's Elle (American) about underactive thyroid disease, and how it's a real disorder but some view it as an excuse for being fat (since the symptoms are rapid weight gain and fatigue).

[ladyyamalthea.livejournal.com]

I was diagnosed with Endometriosis when I was 15. I don't understand why it is embarrassing. And my sister has an under active thyroid, she is not embarrassed by it.

Thie idea baffles me.

[jennifer.livejournal.com]

I have endometriosis. I'm not embarrassed by it. It hurts mentally, because the pain affects me and it affects my husband, and it hurts physically, but it's not embarrassing.

[copperbeech.livejournal.com]

i have endo and PCOS. i can't say that i find either of them embarrassing. the only thing i can think of that women could be embarrassed by with PCOS is hirsuitism, and that can range widely in noticeability. i don't get why anyone would be embarrassed by any of the above though. if random and frequent queaf was involved it could be different. but even then it would just be funny...

[kaelstra.livejournal.com]

Well, while many folks in this community are not defined by their ability to have children, a lot of other people are. Many women feel they are not truly "women" if they are incapable of breeding, and similiarly, many men also feel like less of a man if they aren't even able to reproduce.

I don't feel it makes them a lesser person, whether by choice or not, but like I said, a lot of people put a HUGE important on being fertile.

[hikerpoet.livejournal.com]

My aunt had this thing happen where her bladder somehow turned upside down and she had to have surgery to correct it, and I guess it was pretty serious (but she's okay now!) and she was really embarrassed just because it had to do with her urinary tract but she wasn't embarrassed about other problems she had. I don't know why!

And there may be hang-ups because of personal reasons, or more specific reasonable explanations we're not thinking of. This is not directly related, but I'm not overweight, but I have a tiny little pooch. I'm kinda thin with a pudgy little tummy. But I don't mind...think it is kinda cute, as does my fiance. But people think I'm pregnant all the time! And I still get embarrassed by it, and don't know why. Partly, I'm afraid my co-workers will overhear and wonder themselves/perhaps gossip. This is a more valid reason to be embarrassed. Partly I worry that even though I know it is there, I dont' feel is if it is THAT obvious/first thing people would notice, but maybe it is because so many people comment. This is partly my hangup I need to work on. This may not sound like it relates, but I'm just saying, maybe they do get intrusive questions.

Not everyone is as enlightened as us, and even we all have steps to take on our own subjects.

[althea]

As others have said, the hair growth and the weight gain due to PCOS can be embarrassing. When it was just this vague thing, diagnosed by my then-gyno and then never meaningfully addressed by her again, I felt like it was still all my fault somehow. Like, yeah, I've got this problem that hardly anyone has heard of, but it's not like I can get a t-shirt made up that reads, I'M NOT FAT BECAUSE I'M LAZY, IT'S A DISEASE SYNDROME. REALLY. I SWEAR. So I just walked around feeling hideous. Finding a good doctor and getting appropriate medication changed that for me, but yeah, I can understand the embarrassment factor.

But I agree that it's pretty irritating to have it described as an "embarrassing illness" because that seems to reinforce the idea that people who have it *should* be embarrassed. And that sucks. Oh, and I definitely don't feel embarrassed that it's made me infertile. Sad, but not embarrassed.

[the-fee-fairy.livejournal.com]

when you make the teeshirt, can i have one too?!

[althea]

Hee! I'm so tempted to make one. CafePress makes it so easy to just slap whatever you want on t-shirts, tote bags, blank journals, etc.

[mutt182.livejournal.com]

Everyone's embarrassed by different things. I have a bladder disease and I'm not embarrassed by it, but I know most people are.

Endo growing on the bladder/bowels could also mean they have symptoms affecting those areas which could be classed as "embarrassing" I guess. Or just if they're families put a lot of pressure onto them about having children and make them feel like "failures" for not being able to concieve. The way some men feel less of a man for not being fertile.

[jadecat.livejournal.com]

Keep in mind that people can find anything embarrassing. There have been many women posting here that are afraid their partner will be turned off because one of their labia is longer than the other, or they're just long in general- or because they have inverted nipples they won't show their breasts.

Getting annoyed with them for a normal human emotion doesn't do you much good- does it? :) Understandable to get annoyed if you feel as though the fact that the person who has the same a condition you do is embarrassed about it translates to the idea that you should too.

Plus- families can be weird about all sorts of things- and in some cases refuse to believe that a problem is real and not just 'in their head.' If that's the case here- I can see why she would be embarrassed.

It would be great if everyone was strong enough so that they could speak up, but few are. Fewer still are really happy in their own skin and with their own bodies. Which is sad. So perhaps think about being sorry for the woman for feeling so badly, but don't get annoyed.

[the-fee-fairy.livejournal.com]

It's not the fact that she is embarrassed to have it, its the fact that in front of the nation, on TV, it is being stated that it is an Embarrassing Illness.

I understand that there are a lot of reasons for someone to be embarrassed, but i find it a bit sick of the TV network to think its ok to tell the nation that it is embarrassing for the woman to have it, it is embarrassing for her to be infertile.

[jadecat.livejournal.com]

Ah okay- I misunderstood. Though I wonder if she wrote them because she was embarrassed- and they just went with it because they don't know any better, or if they agree.

[the-fee-fairy.livejournal.com]

not sure...she's on there with her husband (who, apparently has a 'lifestyle disorder').

I don't know who wrote in to the programme.

[jadecat.livejournal.com]

This is terrible but- for some reason the phrase 'lifestyle disorder' makes me giggle...

[the-fee-fairy.livejournal.com]

it made me giggle too, to watch him!

Th 'Lifestyle Disorder' means that his lifestyle is too slow for them to spend time in bed together, and it is too slow for him to take up excercise...yes, he is lazy!

He asked her to run his bath...and to make him a cup of tea...

[rule-discordia.livejournal.com]

I don't know what PCOS is. But once my boyfriend's aunt was diagnosed with endometriosis, the first thing my mother said was "well, she shouldn't have been sleeping around so much". ! I wanted to smack her. First, she didn't sleep around; second, endo isn't sexually transmitted (is it?) So I think there's this perception, in addition to the one of "private parts = private problem", of "private parts = slut problem". Maybe that's part of why they put it down as embarrassing. Ignorant.

Embarrassing problems would be more like, I dunno, constant flatulence, or something like that. ^_^ You can't go around being embarrassed by an illness. You didn't choose it. Illnesses should be fixed, not moralized.

[the-fee-fairy.livejournal.com]

PCOS is Polycystic Ovary (or Ovarian) Syndrome. 'Sufferers' have cysts on their ovaries that affect their hormones. It can cause excessive hair growth (hirsuitism), weight gain, acne and infertility amongst other symtoms.

Much like endometriosis, it is not sexually transmitted, it is not caused by excessive sexual activity, it is an inbuilt hormonal problem. There are studies at the moment to discover how hereditary it is. In my family, we think that both my grandmothers had it (judging by their contraceptive methods and the amount of children produced), my mother has it, and i have it.

although, yes, i do agree that some of the symtoms can be embarrassing, the way that this programme portrays the illnesses is that they are 'intimate' and not the kind of illnesses that people wish to discuss.

I, and many other 'sufferers' are quite open to discussion, it is an illness, much like Asthma, Excema (i use those as examples because they run in my family too...) and anything else hereditary.