“Soulcysters” having to do it for themselves?!(writer says we're CHEESY...)
“Soulcysters” having to do it for themselves?!
Posted by: Webteam on May 15, 2005 - 11:45 PM
Now, we all know the super-duperness of the internet, but is it reliable enough to provide you with a thorough understanding of what is a highly subjective medical condition?
by Martina Booth, Opinion Editor
Debt worries and general trepidation for the future constitute the archetypal anxieties for female students; infertility concerns should not, you would assume, feature alongside these issues. Not so; in particular, Polycystic Ovary Syndrome (PCOS) is a condition which will affect between 5-10% of women of childbearing age, yet despite its relative common status, remains perplexing to medics and sufferers alike.
As well as hindering fertility, many PCOS sufferers struggle with the distressing effects which can accompany the condition, including acne, weight gain, and excessive hair growth. Considering its prominence, does PCOS have the support network vital to its sufferers?
My own personal experience suggests not. I was ‘diagnosed’ (that I shroud this with speculation shall be explained later) with PCOS at nineteen. Initially, pre-diagnosis, the doctors were fantastic. Owing to a dodgy medical history, my concerns about my menstrual cycle led me to being immediately booked in for ultrasound scan.
The woman who performed the scan was lovely (although the sheer amount of water they make you drink in order to enlarge your bladder large enough to detect any problems borders on the criminal), yet after the scan had highlighted cysts on my ovary, I remember sitting in a dead Solem bar, crying into my cup of coffee, feeling barren and alone.
Losing an ovary through childhood illness meant that I have always had to live with the fact that I am perhaps vulnerable to fertility problems; yet this further attack on any future dreams of having children proved profoundly upsetting to comprehend.
Any hope of reassurance on behalf of a doctor proved futile; I am a big supporter of the NHS so this article is not intended as a general disparagement to what is mostly a sturdy institution, yet the doctors I saw in both Manchester and West Yorkshire were surprisingly inept at offering advice.
Although my scan and infrequent periods indicated PCOS, my blood tests came back negative, leading to the doctors unsure what to officially diagnose. Indeed, I was bemused when one doctor, who admitted little knowledge of what is a relatively common condition, told me the best thing I could do would be research the condition on the internet; leaving me to my own devices, and effectively, in a state of limbo.
Now, we all know the super-duperness of the internet, but is it reliable enough to provide you with a thorough understanding of what is a highly subjective medical condition? Ironically, doctors stress not to use the internet as a vehicle for self-diagnosis (go on it with a vague headache, and twenty minutes later you’ve got yourself an inoperable brain tumour), thus it is questionable how effective it can be post-diagnosis.
If you’ve got PCOS and go on there, you’ll not only find that fellow sufferers have a wonderfully robust sense of humour (well, those gals at SoulCysters.com do – I couldn’t read without alternately cringing and chortling at – how can put it – a well-informed yet highly cheesy website); but also that if left untreated, it can lead to endometrial cancer. Just what you need to hear! Although it is telling that it doesn’t tell you just how many PCOS sufferers go on to develop this (you would suspect and hope a very low proportion), this was just one of many unnerving facts which hardly calm the soul, especially when the doctor hasn’t offered any cogent suggestions at how it can be treated.
Admittedly, PCOS is a vague and extremely varied condition. Some people, like myself, are fortunate in that we do not have the previously mentioned physical effects, which I imagine would be incredibly hard to deal with, especially alongside the fertility concerns that PCOS induces. One piece of advice which resonates throughout is to have a good diet, but quite what this constitutes is contentious. It seems widespread that the low-carbohydrate, high protein is most effective, but I’m sure – unless it was an unfortunate mix-up - that I have heard the vice-versa advice proffered.
That’s the main problem with the internet – it often contains well-intentioned but conflicting advice. Perhaps what needs to be addressed with fertility concerns more than anything is the emotional upheaval they can impinge upon its sufferer. My childhood illness which led to the removal of my ovary perhaps occurred at too tender an age for doctors to efficiently discuss latent problems I may face later in life. It is odd, but such an illness blesses you with an indescribable awareness of life, which perhaps can only be understood by those who have similarly neared death; paradoxically when the treatment for the illness affects future fertility, you can progressively, prematurely (and hopefully, unnecessarily) almost grieve for the potential future children which occasionally spark to life in your head – but ones which you may never be able to realise in reality.
Thankfully, PCOS is neither life-threatening nor automatically prevents you from successfully conceiving (after all, remember that Victoria Beckham is herself a PCOS sufferer, and look at her – a positive beacon of fertility!), yet it does make you wonder whether when the time comes (if you are so inclined), whoever is up there will give you the green light to create life.
Any illness which has repercussions on other aspects of your life needs comprehensive advice to alleviate subsequent physical and emotional distress. With PCOS (and I hope I am proved wrong), such a network doesn’t appear to be in place. My experience may be an anomaly to the system, yet it is disconcerting when doctors tell patients draw up their own conclusions about the condition which is loaded with emotional issues, and can, depending on the severity of the sufferer’s condition, affect both personal and physical confidence - as well as dreams which many take for granted can be aspired to, yet heartbreakingly, may be rendered impossible to achieve.
TTC since 10/08
BFP 100mgs clomid-M/C at 6 weeks To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself. Harvey Fierstein
Maybe we should all write to her. SC is far from cheesy. I have learned so much from my cysters. Without this site I would be lost concerning PCOS. I was handed a diagnosis with no information! I think that she is highly misinformed.
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Carey(31) To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. Paul(43)
Married 7-25-02
PCOS Diagnosed Nov 02'
Bi Polar Diagnosed Feb 08'
Current meds~ Lithium&Celexa
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I honestly don't know what to think about the article. One thing that stuck in my head was her comment about conflicting advice. Of course there is conflicting advice. What works for one person with almost every medical condition, doesn't always work for the masses. As her doctor readily admitted, even the medical community doesn't have all the answers so we are left to trial and error remedies. Some of us are lucky enough to have open doctors who are willing to try different avenues and some will not. What exactly each is willing to try as the "standard treatment" varies greatly from doctor to doctor, showing there really isn't a true standard.
Anyway, I love my cheesy cysters. That said, I don't really know what she might have found cheesy. All I've seen on here is a lot of support, mixed with an occassional rant or disagreement. Perhaps the author didn't stay around long enough to ask appropriate questions. As a newbie, frequently you ask generalized questions like "What do I need to know about PCOS?" Well.... I guess that depends on what your symptoms are. You get the general responses "Welcome to Soul Cysters. We're happy to have you." Perhaps one might find that a bit cheesy. It's not until you begin getting specific with your questions that you start to get real advice.
Thankfully, PCOS is neither life-threatening nor automatically prevents you from successfully conceiving (after all, remember that Victoria Beckham is herself a PCOS sufferer, and look at her – a positive beacon of fertility!), yet it does make you wonder whether when the time comes (if you are so inclined), whoever is up there will give you the green light to create life.
Were the he** is this woman getting her information from. If PCOS is not life threatening, tell that to woman with PCOS that just happen to also have HIGH CHOLESTEROL, HIGH BLOOD PRESSURE, HIGH INSULIN AND DIABETES. Also I think all the woman with PCOS who have been TTC for years would be happy to know that it doesn't prevent you from concieving.(sarcastic) I don't know were this woman got her information from, but if we all had as much money as Victoria Beckham, we would probubly have an easier time finding good doctors and fertility treatments.
__________________ Diagnosed-PCOS & endometriosis.
Symptoms- IR, Irregular AF, & Yo-yo weight beggining at 11 y/o.
TTC since 10/08
BFP 100mgs clomid-M/C at 6 weeks To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts.
Never be bullied into silence. Never allow yourself to be made a victim. Accept no one's definition of your life; define yourself. Harvey Fierstein
I'm not sure where she could have gotten that idea from either. Most women are diagnosed with PCOS after having reproductive problems of some sort. There are some women who seem to be able to concieve fairly easily, but there are many more of us who do not.
Sounds to me like she is just a bitter, misinformed sufferer of PCOS and is taking out her anger at inept doctors on SC. Whatever, she is more than welcome to find her information elsewhere, but I would hate the fact that her "opinion" would keep someone else from coming here and finding companionship and support through a harrowing syndrome. I guess she has never dealt with depression either, which can be life threatening when thoughts of suicide enter the picture! And yes, I thought the "Victoria Beckham" part of the article was ludicrous. VB is super rich, she can afford the best endos, the best REs money can buy, things most CYCSTERS can't. She just proved to me that not only is she misinformed, she's ignorant as well.
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WOW.. ok maybe I am just in shock and really do not know what this woman was trying to say but.. 1) When I found out I had PCOS the internet sent me here and years later I can't see where cheesy plays a part.
I have been a member for a long time and have not only learned but made friends on here.. I do not think of myself as PCOS I have it although like the reader my outside appearance doesn't indicate it, blood work, scans, and infertility do, there is no way of knowing what the future holds for the outside. I think the part that bothered me the most (and please keep in mind it is a terrible thing to go through but in my opinion it's not a near death experience) My childhood illness which led to the removal of my ovary perhaps occurred at too tender an age for doctors to efficiently discuss latent problems I may face later in life. It is odd, but such an illness blesses you with an indescribable awareness of life, which perhaps can only be understood by those who have similarly neared death; paradoxically when the treatment for the illness affects future fertility, you can progressively, prematurely (and hopefully, unnecessarily) almost grieve for the potential future children which occasionally spark to life in your head – but ones which you may never be able to realise in reality.
I guess I am a bit bothered by this article but will always know people have opinions and need to voice them. The reference to Beckham being the infertility God .. just wrong PCOS is not just about infertility. As someone stated above what about the high blood pressure, cholesterol, depression, diabetes.. it's real and it's time we as patients need to stop having to educate our doctors about it!! Thanks Kat it was a good read..
__________________ Nanci 36 To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. Mark 36, married in 1997 Tampa, Florida Dx: May 03 After many many other attempts we have been blessed with a baby girl thanks to IVF
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Well, first of all, thanks Kat for sharing that with us...as disturbing as I found it. I first came here in 2003 after I had been diagnosed and had so many unanswered questions. Not only did I find the answers I was looking for, I found quite a few awesome friends here, and I'm so glad I found this "cheesy" message board I'm definitely going to write to her, poor misinformed and misguided person.
Here's what I wrote: (thoughts are a little jumbled but I think I got my point across)
Martina,
Firstly, I am very sorry to hear that you have PCOS. It is a condition that I do not wish upon even my worst enemy. However, I first came to SoulCysters after I was diagnosed and left with many many unanswered questions. Not only did I find the answers to those questions, I found a lot of really good friends there that share the same hopes and fears as I do. Although I run everything by my SC friends, I don't take everyone's suggestions and advice as the gospel truth. I still see a doctor and an obstetrician/gynaecologist regularly. It's just nice to have somewhere to go when it feels like no one else understands. Thank you very much for sharing your story and I'm truly sorry that you view SoulCysters.com the way that you do. However, that is your opinion and you are entitled to it. I am just glad that I found those ladies when I needed them the most, and I still need them every single day. I fear you have been highly misinformed and misguided on this issue. PCOS doesn't prevent you from conceiving??? I beg to differ. I, myself, have been trying to conceive for nearly 5 years now. And there are so many more PCOS sufferers that have been trying a lot longer than that. Not life threatening?? Even though many women are prone to high cholesterol, high blood pressure, diabetes, and high insulin levels. And if one of us are lucky enough to conceive, there's the extremely high risk of miscarriage. I believe that PCOS does more than affect both personal and physical confidence. To quote one of my friends, "I'd rather be cheesy than be alone and uninformed any day."
Carey(31) To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. Paul(43)
Married 7-25-02
PCOS Diagnosed Nov 02'
Bi Polar Diagnosed Feb 08'
Current meds~ Lithium&Celexa
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“Soulcysters” having to do it for themselves?!(writer says we're CHEESY...) 
Were the he** is this woman getting her information from. If PCOS is not life threatening, tell that to woman with PCOS that just happen to also have HIGH CHOLESTEROL, HIGH BLOOD PRESSURE, HIGH INSULIN AND DIABETES. 
I don't know were this woman got her information from, but if we all had as much money as Victoria Beckham, we would probubly have an easier time finding good doctors and fertility treatments.
My Cheesy Cysters!!!!
