One of the things I think it is really important to get back to on this blog is our original focus. When Barbara and I mooted the idea over a year ago, the central tenet of this blog was to give an alternative voice to women with PCOS who weren’t solely focused on fertility/child bearing and weight. When we first started, we wanted to offer an alternative voice to what is already available to women with PCOS in plentiful quantities all over the internet, available in print and even from most doctors. I outlined this somewhat in an early post, which you can read here.
I do think we’ve drifted back to that weight focus and fertility perspective, and while it’s important to acknowledge the validity of the need for blog space and other areas around those two issues, I feel the need to reclaim this space for those who feel like they are silenced by the sheer volume of material out there on fertility and weight.
One thing I think is important to acknowledge is that no matter what life path a cyster takes, her quality of life should be the single most important matter in her health care. If we insist on quality of life being the central focus, then no matter what our choices are, we are improving our lives with PCOS.
Now I have some subjects I will talk about, particularly around self esteem, body image and leaning into some feminism. But what I need to know from those of you who are outside of the babies and weight loss boxes are the subjects that you wish to hear about. I need you to speak up – I know you’re out there, I can see the WordPress stats and the search terms you use that lead you here to this blog. I am also looking for some of you to do guest posts, or at least share resource material. We need the topics and ideas that you have, or we’re never going to have any influence on our health, lives and treatment.
We need to hear from the older cysters, the single cysters, lesbian cysters, those who have chosen not to have children, the fat acceptance cysters, and any others that don’t already have a space in the mainstream.
So please, comment below and be heard, or you can email cystersunited@gmail.com to discuss a topic you might like to write about. This is your chance to create the conversation you’ve been looking for.
Kath
sleepydumpling
pezzdemon
tlcur107
poohgal79
Autumn
Lake Lady
meknena1
livingwithpcosaleh
I’m a Fat Acceptance cyster!
I do have an interest in the fertility side of things too (hoping to conceive again soon – first time I lost weight to do it, this time I’m avoiding intentional weight loss). So I suppose I cover a few categories. I think a feminist space for cysters is really needed – because PCOS affects weight, fertility & ease of gender performance (eg extra hair) it’s a feminist issue.
Good to see you over here Spilt Milk!
I want to do a post about the whole body hair and gender performance thing soon. Particularly in relation to Fat Acceptance – there’s a bit of an phenomena I see building among a lot of fat acceptance imagery. I will do so soon.
Maybe you could do a guest post for us too?
Well you know my opinion! Or at least I think you do. I’m all for talking about the three you mentioned. And probably almost anything else.
Write us up something Barbara, you can do it!
I have an idea for a post. Its something that I have not heard about anyone else speak about in their symptoms but it might be more common than I know because its a fairly personal issue.
I can’t have vaginal intercourse because it hurts WAY too much depending on my time of the month. My OBGYN commented on the pain factor for a simple pap-smear.
My husband and I had to come up with other ways in the bedroom to express our intimacy. So I have always wanted to know – am I alone in this?
Happy to guest write about it.
I experience this too. Not all the time, but often, having sex actually sets off severe abdominal pains for me (it seems to happen particularly as a result of climax). I’m glad I’m not the only one, as I too had not read/heard anyone else bring it up before so thought was just me. I really do find this an issue though as, on top of my already reduced sex drive from being on the pill 24/7, the pain is also a deterrent, and incredibly frustrating.
I would also be interested in a post about medications people are on/have tried/have heard about etc. I have only tried Metformin and it made me incredibly sick (the specialist then made me feel guilty as it was clearly MY fault it wasn’t working) so am now only on bcp all the time, skipping the sugar pills. I am interested in others experiences with treatments (including natural therapies).
I am happy to guest write about any of this (or other areas).
One of my friends has talked about extreme pain from pap smears, and sometimes being too sensitive to have sex. She doesn’t have PCOS, but she has endometriosis.
I don’t have those symptoms, but I do have pain after climax. It started when I used my birth control (NuvaRing) to skip just one period for scheduling reasons, and it was intense enough to keep me from having sex until after my next period. (Kate – this makes me wonder if skipping your week off BCP might be part of the problem.) Ever since then, the pain has been mild but still present.
I guess this thread proves that there’s interest in discussing our symptoms and how we treat them
Thank you all for sharing your experiences around this (Kate, Vanessa, Michelle). I haven’t got any experience at all with this but would love it if one of you would expand on the topic. It’s really important to acknowledge that this is yet another issue many cysters deal with – especially when it comes to a) chronic pain and b) the effect on their sexuality. I’m happy to work with you on a post if you wish, but anything on the subject would be fantastic. If you can email me at cystersunited@gmail.com and we’ll go from there!
I fully support the central tenet of this blog and was relieved when I first heard about a space that wasn’t all baby and weight talk.
I will think up something, I promise.
Thanks Teresa! Jump on in with topics as you come up with them.
Hearing more about the inconveniences/difficulties in having PCOS has helped me greatly. Talking about the depression, the facial hair, the weight gain, etc…it makes me feel not so alone. I’ll be happy to see that continue in future posts.
sweetnfat I am working on another post about depression too.
I’m just in the process of getting diagnosed so it’s somewhat new to me. But, my FA perspective really informs how I understand my conversations with my doctors. They both talk about weight loss, which I’m not against as a fact of life, but I am opposed to as an explicit goal. They don’t push it overly much so I haven’t had to make any strong statements on it. I do feel like the probability of PCOS has made them both actually less likely to demand weight loss than other doctors because they’ve both talked about how difficult it is with PCOS. I’d be interesting in hearing about how other FA folks deal with those conversations.
I’m also single and in my early 30s and appreciated that my OBGYN addressed how to deal with infertility (who knows I might want kids someday), but didn’t overly emphasize this as the only impact of PCOS (since I’m not planning on having children now). Because I know for me, many of the symptoms have been lots of body hair, swinging between months of hyper sexual vs. sometimes no sex drive at all, irregular periods, etc… and all of that definitely influences how I perform my gender identity.
I’m also probably just starting Metformin, so I’d be interested in knowing more about people’s experiences with that, but maybe I can find that elsewhere on the net.
Thanks for starting this blog!
I was taking Metformin for awhile – if you go on http://www.webmd.com, you can see comments from people ranging from their great experience to their awful experience. You will have to experience it yourself to know how it’s going to affect you. Then you can compare your experience to the ones on the website.
The side effects were too much for me.
Metformin seems to be like the little girl with the curl in the middle of her forehead. When it’s good, it’s very very good, when it’s bad it’s wicked!
I’m a lesbian and fat acceptance cyster. I’m new to reading your blog, but I wanted to say I appreciate your willingness to look beyond fertility and weight issues!
I think my main issue that I’m working on right now is my constant exhaustion and my painful acne. any advice on those?
thanks!
Welcome griz! It’s great to know we hit a mark with the lesbian cysters too.
I’ve personally not had any experience with severe acne (though I have suffered that fabulous sister condition, Hidratenitis suppurativa – which is a kind of cystic acne I guess. I could do a post on that one down the track.
As for the constant exhaustion, I have gone through bouts of that, for sure. Most of it was back in my old dieting days though, so that could be the reason rather than the PCOS itself.
Can anyone else add to this?
The fatigue drives me crazy and I thought I must be lazy or something because I see so many people doing things that, honestly, just watching them wears me out. I was diagnosed only a couple years ago and still trying to gauge what might may or may not be a symptom of PCOS. For me, the fatigue seems to only exacerbate my feelings of depression. I don’t know about others but I feel like this exhaustion has only increased over the years. I suspect that a steady weight gain over the years may contribute to this but not positive. Regardless, it affects my ability to do things like spend time with family and friends.
Hi,
I’m over here after reading your PCOS posts on your other website (Fat Heffalump) – I’m from Polka Dots and Rainbows!
I was diagnosed with PCOS when I was 17 or 18 (can’t really remember), and I’m now 25. I’m not so concerned about having children, since my partner and I have discussed other alternatives anyway (adoption, etc).
It is so good to know that there is a space like this where we can talk about these things, because all the websites I’ve come across seem very much geared towards ‘treatments’ and ‘solutions’ rather than the psychological and emotional impact of living with PCOS. I’ve found it incredibly hard to accept all my symptoms – I’ve got so many!
I have dark hair on my chin and sometimes on the sides of my face and in some areas under my chin (top of my neck) and my chest, I get a spotty chin most of the time, I have insulin resistance (so am on Metformin which sometimes upsets my stomach) and spotty/irregular periods. I’ve been lucky that my periods are not so much of an issue as they used to be, they are more regular thanks to some things I’ve been trying (Dong Quai and Agnus Castus), and not so painful.
I’ve been told so many times that I have to ‘lose weight’ but as we all know, it is SO hard to do so when you have PCOS. I’ve started to just let it be and go with HAES and enjoyable exercise. It has taken me a while to figure out that there is only so much I can do, and enjoying my life is more important to me.
The hair is a nuisance, but like you say, it’s just hair and most people have it! I tend to just bleach my chest hair and pluck my chin hair (painful as hell but I’m also looking for less painful ways to deal with it), but I wish I could just learn to accept that this is the way things are (the hairiness, I mean!).
As for the other symptoms – fatigue, insomnia, sugar cravings, depression – I am trying my best to cope with them. It feels good to talk to people about this, because sometimes I feel like I’m making it all up, strangely! I mean, the insomnia, for one, seems to be the thing that bothers me the most because it only makes me more tired.
Sorry about the huge comment! I’m so happy you created this blog, I’m looking forward to reading more and commenting, creating a dialogue and community
- Liz
http://polkadotrainbows.wordpress.com
http://catsandchocolate.wordpress.com